The B-Hive

One Week Later

2012-02-08T21:28:00.002-05:00

You may know (either because you have met them, or because I have talked about them or written about them here) that until last week, we had three dogs. We are dog people. A week ago today we had to say goodbye to our shih tzu, Stella. We were lucky in that her breeder agreed to take her and work toward finding her a good home. I am still so sad, but it was the right decision. Within one week she bit both boys. Now being such a small dog it isn't like she could maul them, but when she bit Carter she almost broke the skin. It was not fair to have the boys getting bitten, being worried about it and telling me "Stella is mean. I want her to live somewhere else." We made the right decision, but it is so hard because she wasn't a bad dog and it is so strange no having her here. It does help knowing that she is in a good home. We are back to being a two dog family. We have Maggie, a sweet and loving Golden Retriever who will be nine later this year; and Brock who is a little over two. Brock is an English Bulldog, and just the most gentle loving dog. The phrase "big dumb animal" applies pretty well to him. He just lays around lazily most of the day. He does really enjoy being loved. For example he doesn't realize how big he is and will sit on our laps any chance he gets.

I feel lucky to have my other two fur babies as I come to terms with the decision we had to make to say goodbye to Stella.

Time Flies

2012-01-27T19:28:00.003-05:00

You know the saying... "Time flies when you are having fun." While this is certainly true, I have found that being the parent of two small boys, time flies in general. The boys are growing up so fast. I find myself making a conscious effort to slow down and enjoy each moment. I've decided that part of keeping these early memories alive involves doing a better job of keeping up with this blog.

Last week marked an anniversary for Owen that I will never forget. Wednesday the 18th marked two years since Owen's VCUR was resolved. He was scheduled for the first surgery that morning, during which Dr. G was to be removing the stent that had been placed in his ureter during his bladder reconstruction that was done in October. He had surgery on November 20 to remove both stents, at which time we were told that the reconstruction surgery did not repair the reflux as it was intended to do. He had to put one of the stents back in until he had a plan in place as to how the problem would be dealt with in the end. During a post-op appointment after the November surgery, Dr. G told us to get through the holidays and they the second stent would have to be removed. It was a terrible time for us, waiting and not knowing what to expect long-term.

On January 18, 2010 we headed to the hospital feeling very sad, worried, overwhelmed and defeated. Our hopes for a cure for Owen's VCUR had been dashed. We were in contact with two other pediatric urologist who were the best in the country. It was time figure out the best thing to do to allow him to reflux and at the same time allow his body to accommodate the amount of urine that was going to have to be held in his urinary tract. Dr. G came out into the waiting room instead of meeting us in a conference room as was customary. He was holding the x-ray from Owen's post-op VCUG and exclaimed with extreme excitement and disbelief, "It is fixed!" What?! What is fixed? The VCUR can't be fixed, that was not even mentioned as possibility. It was true, after a 1cc shot of Deflux, he was no longer refluxing! It was the best news we had ever received and the most difficult case of bladder reflux that Dr. G had ever been able to fix. When I asked how it had happened, Dr. G said there was really no medical explanation. It was partially a case of his body having more time to heal, but mostly we had received a miracle.

Of all of the dates etched in my memory in relation to Owen's health journey and his 8 surgeries, this is the date that I will forever remember as the day that our prayers were answered.

The Big S-I-X!

2011-12-31T11:49:00.003-05:00

I can't believe it. My first baby is six. Six years ago today, Carter was born and I was given the great gift of motherhood. He has brought so much joy and love to our lives in these six years. I couldn't be more proud of the little man he is becoming. We are so blessed to have him as a part of each of our days.

This year, Carter is very excited that his birthday is New Year's Eve. He knew before that the two occasions occurred on the same day, but never seemed to care before. We have had lots of fun playing with his new Wii and Mario Kart game. His goal is to stay awake until midnight. He is, after all, a very big boy now! We love you up to the stars and back Mr. C!

Ten Years

2011-10-02T10:10:00.004-04:00

Last month was the 10 year anniversary of the awful terrorist attack on the World Trade Center, the Pentagon and the plane that crashed in Shanksville, PA. I chose not to write about the event, but certainly not because it didn't effect me. Quite the opposite, I will never forget that day in 2001. It is very emotional for me. I will never forget.

Our family went through our own personal tragedy 10 years ago. When I was a freshman in college and Ashley was a junior in high school, our mom was diagnosed with Breast Cancer. The diagnosis was terrifying. It felt awful for me being over 300 mile away, having to receive updates over the phone. I made a decision early on to travel home as often a possible. I brought a car back to school with me so that I could go home at any time. We had no idea what to expect and didn't want to count on my dad being able to come pick me up if necessary. My mom had several surgeries, and ultimately had a unilateral mastectomy. This was obviously major surgery, very scary for all of us. I still can't imagine how my mom felt receiving the news, scheduling the surgery and making the decision to lose a part of her body to save her life. I did know that I needed to be there for her as much as possible. I was there for her surgery and as much of her recovery as possible.

Every year since my mom was diagnosed, her yearly mammograms have been a huge source of stress for her and for us. There was always the fear of the cancer coming back.

My mom just had her yearly testing and received NEGATIVE results! My mom is now a 10 year Breast Cancer Survivor! I am so proud of my mom! She is a very strong and brave woman.

Preschool: Fun and Germs

2011-09-15T19:11:00.006-04:00

This week was week two of preschool for Owen. He is going for 3 hours five days a week. This milestone is huge for Owen. It was not too long ago that we were told that Owen's VCUR could not be resolved and other measures would need to be taken to save his kidneys. We were told that the only choice was to allow the reflux. The only way to do that without causing kidney damage and probably eventually failure was to augment his bladder with bowel. If that had been done, he would have had a permanent ostomy, and his bladder would need to be drained with a catheter every 2-3 hours for the rest of his life to prevent dangerous infection. This would obviously have needed to be done by us as his parents and when it came time for school an aide or perhaps even a nurse until he could be responsible for the task himself. Until his reflux was resolved amazingly and unexpectedly during his surgery in January 2010, I couldn't even think about what sending him to school would mean as far as his health. It was something that terrified me and made me so sad for the opportunities that he was likely to miss out on. Fast forward about a year and a half and Owen is in preschool every day at our church's preschool in a classroom with other typical children. It is nice to have him there because it is a familiar place. While his teacher is not a member of our church, the administrators are. As I have said too many times to count, our church family is wonderful beyond words. I love that Owen is lucky enough to have some of them in his life on a daily basis because of school. It is also comforting to know that I have friends there that are keeping an eye on him. He was medically cleared for daycare, preschool, any kind of program of that nature in June and it was some of the best news I had ever heard. The only thing that sets him apart from his classroom (other than his remaining leg length discrepancy and the fact that we need to watch vigilantly for signs of a UTI) is that he has not been allowed to potty train until recently. That being said, he still isn't the only child in his class that is not fully potty trained. Just the only one with a medical excuse. We were given permission to pursue potty training in July. Owen was interested and began asking to go potty occasionally. We also started taking him and reminding him more regularly. He was doing well and then had to have his ear surgery, which was a set back. As of now he is wearing Pull Ups to school and doing great using the potty at school. We are still working on training at home. Potty training for Owen is complicated because of how different his urinary tract was and still is.

Ok, I got off track. My point was that Owen is fitting in at preschool very well, and his medical history is not holding him back one bit. I am one very proud Mama. He loves his teacher, the chance to socialize is great for him and he looks forward to going to school. He has no problem with me leaving there. We are supposed to drive through the drop-off line in front of the sidewalk and one of the teachers takes Owen out of the car and walks him into school. Even the first day he didn't shed a tear, just said "bye Mom" and was on his way. This week he is working on his colors, which he knew before starting school, shapes and continuing to get accustomed to the school environment. One of my favorite things is seeing the craft that he has worked on each day. Today he worked on tracing circles and I was very impressed with how well he did. These activities and crafts are a concrete examples of how much he is learning and growing to be a big boy. It is amazing and thrilling to me. I think back to Carter starting preschool and doing all of these things, and can't believe we are now at that stage with Owen. His teacher and assistant teacher are both very nice. I am so glad that he is having fun and enjoying his time at school so much.

Now for the major downfall of preschool; the fact that the other kids each bring their own set of germs and generally share them more readily than they share toys. So many people told me the germ factor is not as bad with the second child, as they have developed a certain amount of immunities from all of the germs brought home from school by the first child. I don't know that I believe this. I picked Owen up about 45 minutes early today after receiving a call from the Parish Administrator, who just loves Owen and has been a great friend to our family, saying that he was not feeling well and looked just pitiful. Sure enough, even though he was fine this morning, he had a runny nose, nasaly voice, congestion, "sick eyes" and looks just plain miserable. He has picked up his first illness due to preschool germs. He doesn't have a fever and I think it is probably just a cold, but he will be visiting the pediatrician in the morning. I am concerned about a possible ear infection, especially in the ear that was just operated on. Better safe than sorry! He can go back to having fun at preschool next week!

Chicken Cordon Bleu Pizza

2011-09-05T19:34:00.004-04:00

This is a recipe that I adapted years ago, so much so that I kind of made it up. It is a hit with everyone, so it stuck!

Cooked chicken breast (I use one big one) cut into small chunks
Pillsbury pizza crust
Low-fat Ranch Dressing
Garlic Powder
Deli Ham
Tomatoes
Shredded Mozzerella Cheese (enough to cover the pizza, about one 16 oz. package for one pizza)

Directions:
Lay out the Pillsbury pizza crust on a baking sheet. Press thin, this will cover most of the sheet.
Bake for about 7-8 minutes at 350 degrees to precook crust.
Cut cooked chicken breast into small chunks.
After pizza crust has cooled, spread with about 1/3 of a bottle of low-fat Ranch dressing (too much will make the pizza soggy)
Sprinkle with a light dusting of garlic powder
Chop Deli Ham and spread evenly on the pizza
Spread chunks of chicken evenly on pizza
Dice tomatoes and spread evenly on pizza
Top pizza with as much mozzerella cheese as you like.
Bake at 350 degrees for about 13-15 minutes until crust is lightly browned and cheese is melted.

Enjoy! We certainly do!

2011-09-05T19:34:00.001-04:00

Now he is Three!

2011-09-05T18:28:00.002-04:00

Saturday, August 27 was Owen's 3rd birthday. My baby is no longer a baby, although I still tell him "As long as I'm living my baby you'll be." My boy is 3. No matter which way I say it or how many times I say it I just can't believe it. We are blessed beyond measure to have this Little Man in our lives. Watching him grow, seeing him hit new milestones, experiencing all of the love and happiness that he shares every single day is just wonderful. His stubborn streak continues to grow. At times he can be quite a little pistol, but he is also just the sweetest guy. He is strong, he teaches me new things each and every day. I think the saying "wise beyond his years" is meant to describe Owen. Not that he spends his free time reading the encyclopedia or doing long division. He has this curious, yet intuitive nature that is hard to describe but is just obvious once you spend time with him. He is our cuddly boy, always crawling up on our bed or the couch to snuggle and say I love you. He and Carter are the best of friends. As Carter says, they are lovey brothers. Of course that is when they are not arguing about who gets to be the fireman, policeman, etc. depending on what they are pretending. Or wrestling. The funny part is that Owen definitely holds his own as the younger brother, and certainly gives Carter a run for his money.

For most of the year, Owen was in great health. We did switch pediatricians to a friend from church how is a pediatrician and internal medicine doctor. He is great with the boys and extremely thorough. We were so pleased that I began seeing him as my primary care physician also. As I wrote in an earlier post, in July Dr. Bill found a cholesteatoma, or benign growth on Owen's right ear drum. He had to have it removed just 8 days before his birthday. So much for a year free of surgery. In all seriousness, it was the most simple of the 8 surgeries he has had, and he was back to his happy-go-lucky self in no time.

We look forward to a whole lot more excitement as Owen continues to grow. For starters, he will be starting preschool tomorrow. I'm not sure he fully grasps what he's getting into, but his Mama is having a hard time just thinking about it. Also, Owen's Wish Trip to Disney World is coming up at the beginning of October. He got two Mickey Mouse shirts for his birthday to wear on our trip. Again, Happy Birthday Little Man. You are loved more than you know!

I will post pictures soon. I am having trouble figuring out how to post on Blogger on my new computer. It is a case of user error, nothing to do with the computer itself!

Kindergarten

2011-09-04T10:02:00.005-04:00

Carter had his first glimpse at Kindergarten back in April when we went for registration and Open House. He was curious but shy. He was given an assessment test and we toured the school. I know that at the time Kindergarten seemed like a far off place to both Carter and to me.

As usual, time has flown by. Even though it seems like just yesterday that we were casually touring the school, it is indeed September and Carter has finished his first week of Kindergarten. School started for our district on August 25. Kindergarten was the exception. As hundreds of kids were saying goodbye to summer and returning to school, Kindergarteners (and their parents) were entering a while new world. All of the Kindergarten classes started on a staggered schedule. At Open House in April, we picked the day that would be Carter's first day of Kindergarten. I think about 5 or 6 kids started in each class each day starting on the 25th until the real first day of Kindergarten on August 31st. Carter's staggered start day was the 29th, so he started on Monday, had Tuesday off and started going every day on Wednesday. It worked out pretty well. I didn't want to have him start too early and therefore have too many days off before August 31st. Wouldn't want him forgetting his new routine. It seemed like the best choice for Carter because as I suspected he had a great day on Monday, begged to go back Tuesday and couldn't, but was still interested in returning on Wednesday.

August 23rd was orientation. This is when we found out who Carter's teacher would be (exactly the teacher I was hoping he would get) look at his new classroom, ask lots of questions, find out his bus number, ask some more questions, and buy t-shirts for school spirit. Carter was a bit reserved as we went to his new classroom and met his teacher. He took his time looking around, checking the place out. Before long he had familiarized himself with the place and started to explore, ask the teacher questions of his own. Though I was feeling very overwhelmed by all of this and the idea of sending my baby to Kindergarten, I left feeling as comfortable as I was going to feel. I asked all of my questions, Carter asked his questions and knew where he was going. We would be fine. Right?

Overall, his first week of school went well. He likes his teacher, he made new friends and he really likes recess. We had the requisite first day snafu; there was a miscommunication and they didn't put Carter on the bus in the afternoon. He took the whole thing in stride. I frantically sped to the school, worrying that Carter was going to feel abandoned and think we left him at school. When I got there he was sitting in the office with his teacher, making friends with another boy who was supposed to have been sent home on the bus. We had that all worked out for Wednesday and Carter rode the school bus for the first time. This was one of the things he was looking most forward to about going to school, and I think it ended up being a bit of a letdown. When I asked him how the bus ride was, he was most excited to report that he gets to sit right behind the bus driver. That's how it is, the little kids up front and the big kids in the back. I doubt he will think sitting at the front of the bus is so cool for very much longer. Thursday was the only day that he struggled a bit. At one point during the day he just didn't want to follow directions. That was also the day he came home looking like he might just fall asleep standing up. He was exhausted, and even after laying down to rest for an hour or so, he was still pretty whooped. We talked about listening to his teacher and following directions and he had a much better day on Friday.

He will return on Tuesday after the long weekend, but will have to walk in and go to his classroom by himself. Last week I took him in, and while we didn't have any sobbing or serious leg-clinging, I know it was a comfort to him. Tuesday is the day that the school has decided that the kids don't need a hand to hold in the morning. I will drive up to the school and go through the drop-off line. I will drive away and wonder if my boy is scared, if he will find the right hallway. All things considered, I think he likes Kindergarten. For me, I think it is going to take a bit more getting used to.

I will post some pictures soon.

Another Trip to the OR and Comfort from a Familiar Face

2011-08-20T11:34:00.005-04:00

Yesterday Owen had surgery to remove the cholesteatoma, which was discovered mid-July, from his right ear. We had to be at the hospital downtown by 6am. My mom was going to be keeping Carter for the day and thought it would be easier (and would make Carter feel special) for him to have a sleepover there on Thursday night. He had fun and did well, except for right before bed when he was missing Owen. We got to the hospital and checked in at Outpatient Surgery Registration. This was Owen's eighth surgery, but only his second outpatient surgery. For the first outpatient surgery we had to check in on the pediatric floor, pre-op was a bit different this time.

Besides being worried about the surgery in general, wondering if the cholesteatoma would be attached to his eardrum and cause a more complicated surgery, I was anxious about how Owen would react to all of the pre-op activities. The last time he had surgery he was 18 months old. He was having surgery about every two months and had unfortunately become somewhat routine. We knew what to expect taking baby Owen to the hospital for surgery. This time we were taking almost-three-year-old Owen to the hospital for surgery. Our first obstacle was the fact that he was NPO after midnight. This of course was no different than previous surgeries, but now Owen requests his milk within seconds of opening his eyes in the morning. I was expecting this to be a serious problem, complete with a probable meltdown. Surprisingly he didn't start asking for milk until we had already been in pre-op for about half an hour. It certainly didn't help that two different nurses told him that he could have a Popsicle after surgery. How about we don't talk about food or drink to a toddler who is NPO. Thanks. The second obstacle that I had anticipated was Owen being tired/bored, as we would have to wait about 2 hours at the hospital before surgery. When we took baby Owen to the hospital before the sun came up we would scoop him out of his crib and deposit him into his car seat, where he would promptly drift back to dreamland. Not the case this time. He did however ride quietly almost the entire way to the hospital, possibly because he was asleep with his eyes open. He asked once why it was still dark out. Good question, Little Man.

Not too long into our wait in pre-op the anesthesiologist that was going to be taking care of Owen during the surgery came to introduce himself, ask us questions that we had already been asked at least five times, and answer any questions that we had. I recognized him as soon as he appeared inside the curtain of our section of the pre-op area. Dr. B had been the anesthesiologist during two of Owen's previous surgeries. He is my favorite anesthesiologist! Very nice, compassionate, always takes the time to make sure that we as parents are comfortable with the procedure and the anesthesia methods, and he is very pro-active in recovery. The two other surgeries that he was involved with happened to be the two surgeries after which Owen had a difficult time in recovery. Neither time were these issues Dr. B's fault. After his cleft lip repair he had breathing issues because he had a difficult time coming out of anesthesia and the intubation tube caused irritation to his airway. This is almost exactly what happened this time in recovery. It was great to have Dr. B there, having known what happened previously and acting quickly to improve the situation. The second surgery that he was involved with was Owen's bladder reconstruction surgery. He spiked a fever during that surgery and they had to use cooling blankets in the OR in order to be able to continue with the surgery. In recovery his temperature climbed as high as 103.8 degrees. As it turned out, they think he had gone into surgery with the start of a virus and that was the culprit. Dr. B remembered Owen and remembered us. He was very nice, commenting that he was so sorry to see Owen back for another surgery. He couldn't believe how big he had gotten, and pointed out that it is a lot easier to see the changes in a child when you aren't seeing them every two months.

Owen got his Versed (silly juice) at about 7:20. After about 7 minutes he was definitely acting quite silly. He had purple latex gloves on and was playing Dr. Owen while sitting on my lap. He found it all very funny. The nurse anethesist came to take him back to the OR at 7:44 and Wes and I went to the waiting room. After sending my baby back to the OR and sitting worrying in the waiting room eight times, it does not get one bit easier. Wes' dad came a little bit after 8 to sit and wait with us, which was very nice.

The surgery took about an hour and fifteen minutes. Dr. Gold, the surgeon came out to the waiting room and explained to us that the surgery went very well. The cholesteatoma was easily removed and was not attached to his ear drum, therefore none of the ear drum needed to be removed. It basically went as well as it could possibly have gone, for which we are extremely thankful. He said it was definitely a benign cholesteatoma, but it was sent to pathology for testing to be 100% sure. As I mentioned above, Owen had a difficult time coming out of anesthesia. He was very agitated, crying and disoriented. As soon as he was sufficiently awake he noticed the IV in his hand and got to work trying to rip it out. I informed the nurse that he would rip the IV out. Since he wasn't receiving anything through the IV it could be removed. As the nurse went to get supplies to remove it, Owen continued trying to pull it out even after we tried covering it in the hopes that he would forget about it. Dr. B came and noticed that O was having trouble breathing (his oxygen sats were still staying above 96) and sounded very raspy and croupy. He ordered a breathing treatment to help him breath easier, which allowed him to calm down a bit. Shortly after the breathing treatment he was falling asleep and then waking himself up each time he got upset. Since his vitals were good, the nurse paged Dr. B to come check him one more time. He gave us the go-ahead to take him home as soon as we felt comfortable. After deciding that part of the reason he was getting so worked up was that he was still in the hospital and still being disturbed by the activity there, we decided he was fine to go home. He fell asleep before we even left the parking lot and slept the whole way home. Within minutes of walking into the house Owen put on his man boots and a hat. He ate a great dinner and acted almost totally normal after a nice long nap.

Two doses of Motrin and a good night's sleep and he is pretty much back to his regular self today. A huge thank you to all of our family and friends who sent prayers and positive thoughts our way. We feel very blessed to have so many people who care about Owen and our family. We are also extremely fortunate that Owen has such wonderful doctors. In this case, it is wonderful that Dr. Bill caught the cholesteatoma while it was so small. That obviously played a huge part in the ease of removal.

A Very Personal Challenge

2011-07-25T22:39:00.004-04:00

If you are a regular visitor to the B-Hive, you know that we have been through many challenges as a family in the past 3 years. I have said many times that one of the most important things throughout this journey has been our church family. My faith has been tested. I have prayed to God, thanked Him for the huge blessings in my life, and at times wondered why He has tested us with some of the challenges that He has thrown our way. Sometimes my prayers have sounded a lot like begging, pleading for God's help. No matter how you look at it, my faith has been tested over the past three years. I can also say that sitting here today, my faith is stronger than it has ever been. There is no doubt in my mind that God has not only carried Owen on his journey toward healing, but that he has been right there with me as I have wondered how in the world I would make it through the next days, weeks, months.

Some time ago, I'm not sure exactly how long, I saw a posting on a great friend's Facebook page (I love you Angela!) about reading the Bible in 90 days. At first I scrolled past the link not thinking too much of it. I did kind of a double take and scrolled back to the link. My thought was, "90 days? That is not possible. How could anyone read the entire Bible in such a short period of time?" After thinking about it for a few moments I thought, I'd love to do this. I'd love to do this with Angela who is a strong woman of faith whom I really love and respect. Then I started thinking about the challenge and what it would mean to me to complete it.

Today marks the beginning of Week 3 of Bible in 90 Days (B90Days). As of today I have read through the books of Genesis, Exodus, Leviticus, Numbers, and Deuteronomy. Tomorrow starts the book of Joshua. Some parts have been particular difficult, slow dense reading or a lot or repetition. Other parts have been so enlightening. All in all I am loving it and am so proud that I am sticking with the challenge and on most days not even finding it particularly difficult. Support and accountability are huge factors as well. There is a huge group of women, other moms, taking this challenge. I was assigned to a group and we check in with a mentor each Monday. I also have Angela reading right along with me, and also a good friend from high school.

I am looking forward to continuing on this journey, learning more about my faith and myself and reading the WHOLE Bible!

Another Surgery and a Bladder Scare

2011-07-15T19:14:00.004-04:00

At the end of June both boys were under the weather. I suspected ear infections, so off to the pediatrician we went. We left with confirmation that each boy had one infected ear and with armed with antibiotics. I set up appointments for ear checks. Owen went on Tuesday. He had improved quite a lot, no fevers no complaints. On Sunday night he started acting like he wasn't feeling too well and by Monday his fever had spiked to 101.4 degrees. By Tuesday morning the boy insisted that his ear did not hurt. To be honest, he's almost 3 and changes his mind quite a bit. I wasn't buying it and fully expected to be told that his ear was still infected or infected again. Wes changed his first morning diaper after he woke up. As I went to perform diaper change number 2 of the day, I noticed that his urine smelled particularly strong. (Sorry for the potty talk, but lets face it y'all already know quite a bit about Owen's urinary tract.) I started to worry and asked Wes to come to the appointment with us. Deep down I was pretty sure he had a UTI. I kept trying to talk myself out of it. He hasn't had one since his very first kidney infection at 5 weeks of age, I am sensitive to all things related to Owen's urinary tract, he is starting to potty train so maybe the strong smell had to do with him holding it and then instead of telling me he had to pee he went in his diaper, etc. As we waited in the exam room for the doctor Owen announced that he had to do pee pees. We asked the nurse for a specimen cup to collect his urine. I don't know why this surprised me, perhaps because we had switched doctors to a friend of ours from church and he is much more thorough than our original pediatrician, but the nurse argued with us about the need for a urine sample. Owen has a fever, we test his urine. End of story. She eventually saw things our way. Owen wanted Daddy to take him pee pees and was thrilled to go in a cup. Wes came back and told me that the urine was extremely crowded. Oh no, I thought. I knew then that my suspicion was correct.

The doctor came in and began to examine Owen. Neither ear was infected. More evidence supporting my UTI hypothesis. After looking in the second ear, Dr. Bill went to take a second peek in the first ear. Then back to the second, repeated a few times, taking a longer look each time. It turns out he had seen a pearly looking growth on Owen's right ear drum. He suspected that it was something called a cholesteatoma. He wanted Owen to see an ENT to confirm. We were able to get an appointment for Wednesday morning with the ENT that did Carter's ear tubes. I was so anxious, worried and upset. We were very happy to be able to get an appointment so quickly and at least know what we were dealing with. Both of the ENT doctors that have taken care of Carter looked in Owen's ear and confirmed the cholesteatoma. They wanted Owen to see one of their partners in their downtown to see one of their partners who operates on these things all of the time. Again, we were lucky to get in to see him right away. We went downtown on Thursday, where the surgeon confirmed that it was indeed a cholesteatoma and would need to be surgically removed. It is congenital, yet another birth defect. It is very small; most of these growths are not caught until they are much bigger. All three of the ENTs were very impressed that Dr. Bill caught it. After a CT scan, the surgeon was able to tell us that the cholesteatoma had not impacted any of the "hearing bones" around it in the ear. A hearing test confirmed that he has not experienced hearing lost. Though I am very upset about another surgery and just so worried, we received the very best of the possible bad news. I should be hearing from the office on Monday to schedule the surgery. We really appreciate all of the prayers, positive thoughts and support that people have shown.

After checking Owen's urine dip, Dr. Bill confirmed that he did in fact have a bladder infection. More worry, anxiety and an overwhelming feeling of why is this happening again. I spoke the the nurse at Owen's urologist's office. She spoke to the doctor, and he expressed that he is not overly concerned about the infection and would not be in any hurry to intervene in any way. He said he felt that Owen's starting potty training and holding his urine is definitely a contributing factor. Since Owen had his urology check-up on June 14, he felt that the way his kidneys emptied of all dilatation after he went pee was very positive and in his opinion meant that it was very unlikely that he was having any recurrent reflux. I was also assured that there was no reason to be overly concerned about the reflux recurring, for it could not ever go back to the severity from before the repairs. More good news, no more fevers and Owen is back to his happy energetic self. The fact that he is not showing clinical sign of illness is probably the best news at all. I think it goes without saying that it has been a very long week.

Eighteen months Post Reflux Resolution

2011-06-16T21:35:00.003-04:00

It is impossible to believe, but it has been 18 months since Owen's last surgery. You may remember, two months after being told that the bladder reconstruction was not successful and that we would have no choice but to augment Owen's bladder with bowel tissue and just let him continue to reflux, Dr. Gazak had to go in and remove the stent that remained in one of Owen's kidneys. With no medical explanation, those two months allowed Owen to heal. One shot of deflux into his ureter and his reflux was resolved. Such a wonderful blessing; a true miracle. Yes, it has been 18 months since then. In that time we have only had two follow-up appointments with Dr. Gazak. The second was on Tuesday. It had been 9 months since the last appointment. Nine months since he had blood work to check his kidney function or a renal pelvic ultrasound to check for hydronephrosis. During the ultrasound, I looked at the images on the screen and felt very uncomfortable, even scared. There were several large black spots in Owen's kidneys, which means hydronephrosis. I couldn't stop the panic from creeping in. What was wrong? Why were his kidneys so dilated? How many steps back were we taking? Were we going to have to start this awful journey all over again? I could also tell that his kidneys were much longer than they were the last time I got to see them. Trying to calm myself down I thought, maybe something is going on that I don't understand. We moved to an exam room where we waited for Dr. Gazak. I was terrified. He came in and told us that all of the pertinent levels in his blood showed normal kidney function. We began our normal routine of going over the ultrasound images on the exam table. He used a pen to outline each kidney, then looked at me and confirmed my worst fear- There is a lot of dilation. Much more than last time. I thought I might be sick. He quickly hypothesized that the dilation could be result of Owen having a full bladder. Maybe the boy had to pee. Wes whisked Owen off to the bathroom with a specimen cup in hand. Owen peed in the cup, which he thought was pretty cool. Until now urine collection has involved either a catheter or a urine bag. After he had emptied his bladder, Nurse Judy took another look at Owen's kidney through ultrasound. We were all immediately relieved at the sight of two white and fuzzy kidneys. Just how they should be. To say that I was relieved is a huge understatement. Dr. Gazak came in and confirmed that both kidneys in fact looked perfectly normal. Normal!! Dr. Gazak told us that this had probably happened because Owen is starting to potty train himself. His kidneys were not dilated because of reflux, but because he had been holding his urine. This also means that we have been given the go ahead to start actually working on potty training. Dr. Gazak recommended that we put Owen on a two-hour voiding schedule. He is still in diapers right now, but doing very well with the first part of the process. He goes to the potty like a champ, and sometimes even decides to do so on his own. Even we were given quite a scare at first, the appointment ended with great news. Little Man is doing great! We are now on a one year follow up, a place that I never thought we would be.

Luck 'o' the Irish- Make a Wish!

2011-03-17T20:30:00.003-04:00

Happy St. Patrick's Day!!!

Wes and I are both part Irish and enjoy celebrating St. Patrick's Day. Although I think Wes would be the first to admit that the corned beef and cabbage play a large role in his love for this day. My mom's side of the family is Scotch-Irish. Talk to my mom long enough and surely she will tell you about her ancestor's castle.

The kids are really starting to have fun with it, especially Carter. Surely with a name like Owen Reilly, Little Man will come to embrace the "green day" very soon. Although the boys had matching green shirts to wear today, Carter was very disappointed that he didn't have green underwear. Sorry, dude. He did have a blast at school, arriving to find that a sneaky Leprechaun had come in early this morning and "destroyed the school". Amongst the destruction there were green footprints, toilet water that had turned green, green milk at snack time, items displaced in the classrooms, etc. He was so funny at home, pointing out things that the Leprechaun had done to the house. "Mom, look! That blanket was folded when we left this morning. Your camera wasn't on that table before, he moved it." Ok, so the teachers at school clearly rigged a Leprechaun break-in. I did not. At home Carter was merely noticing things naturally out of place. I didn't have the heart to tell him.

____________________________________________________________________

On this "lucky" day, I received a surprising phone call. It caught me off guard because I had totally forgotten about an online form I had filled out several months ago. This afternoon I got a call from our regional office of the Make a Wish Foundation. They were calling in regard to Owen. He is now being considered to have a Wish granted through the Foundation. I recovered from my surprise and was able to answer the questions necessary to complete the initial round of qualification. Now Owen's doctor will receive a form to verify his medical eligibility. Basically they need confirmation of his birth defects, the life threatening condition he faced early on because we had no knowledge of his health issues with the exception of his cleft lip, the surgeries he has had, the long-term effects (particularly the fact that he will need long-term urological care) and the leg lengthening surgeries that he will require in the future. The doctor will need to provide confirmation of the story that I told, Owen's story.

Wes and I are both dealing with so many emotions surrounding the possibility that Owen could be granted a Wish. I really thought long and hard before even initiating the process, and then honestly forgot all about it. It wasn't something I was counting on, I don't know too terribly much about the process. Really, we continued our daily routines and our lives have been full and busy as always. It was very emotional and difficult for me to answer the questions being asked and try to tell this woman whose call caught me totally off guard a story that unfolded over the first 18 months or so of Owen's life. It is a long story, a story filled with too many doctor appointments, invasive tests and seven surgeries. How do I sum that up for her to fit neatly into a form that she is required to fill out? Owen's story continues to unfold. However, for now we view Owen (as do his doctors) as a typical and healthy little boy with a leg length discrepancy who happens to require the continued care of a urologist to be certain that his kidneys continue to function well despite the terrible strain his disease put on them. One of the most difficult things for us is that in imagining Owen being granted a Wish, we are also led to think of what our Little Man has fought to overcome, the fact that we almost lost him, the amount of pain and suffering he endured to get to where he is today. Ironically, those are the exact things that qualify Owen for a Wish and the reasons that we know that he deserves to be considered.

Two Year Well Visit

2010-11-03T19:10:00.003-04:00

Owen had his two year well visit a few weeks ago. It was a bit late for two reasons: 1.) He had several follow-up appointments with specialists. Since these doctors are much harder to schedule appointments with, I had to wait until those appointments were set in stone before I could schedule an appointment with the pediatrician. 2.) We decided to finally bite the bullet and switch pediatricians for the kids. While I liked our old office, I had some trouble with the doctor that they saw most often taking me seriously regarding some issues with Owen's health. It just isn't right to have to push so hard for what your child needs or argue with the doctor. I always got my way in the end, there was just a lot of unnecessary back and forth discussion. We were pushed to finally make the decision when the original doctor left the practice. We are now seeing a friend from church and I am extremely happy with the switch. He and his wife are both doctors in the same practice. He will be the boys' main doctor, but I can always schedule and appointment with his wife if he is booked and one of the kids is sick.

Owen's appointment went very well. Dr. Bill was extremely through and although he knew quite a bit about Owen's history, he made sure to understand the whole story. One thing that was worrisome was that he heard a heart murmur. It is called Still's murmur, a benign murmur that is heard during a few different stages of development due to growth of the heart. One of the ages is 2. He assured me that there was nothing to worry about, especially since Owen had and echo back when he was in the PICU as they were trying to come up with his diagnoses.

Owen was in about the 65th percentile for height and between 40 and 45% for weight. He is doing phenomenally developmentally and Dr. Bill was very impressed. He wants to see him again in 3 months instead of at the normal 3 year well visit just so that he can keep up with him and make sure everything is going well. This is mostly because he is becoming his caregiver late in the game.

We love you Dr. Bill!

Urology News

2010-10-17T15:17:00.003-04:00

On Friday, Owen had a six month appointment with Dr. Gazak to make sure all is well from a urology standpoint. In all the times we have been to his office, I think this was only the second time he was there on time and had not gotten stuck in surgery. Don't get me wrong, I have no problem waiting. If it were my child that he was operation on I would want him to be there instead of rushing to the office. Still, it made for a much shorter visit than we are used to. Owen still got a chance to climb around in the play house that is in the waiting room. Then it was time for his renal pelvic ultrasound. I was a little worried about how this was going to go. When he was very young he did great during the ultrasounds. He would pretty much just lie there and let us move him to the appropriate positions. The last time he had one (six months ago) it was a disaster. He cried, he squirmed, he screamed. He basically made it nearly impossible to get a good view of his kidney and bladder as well as look for his ureters. Luckily he was perfect during the ultrasound. When he was supposed to lay on his back he did. He didn't even mind the ultrasound jelly on his belly. He got a little bit on his finger and asked Nurse Judy to wipe it off. He was talkative and response to Judy and she loved it. There was a period of time where Owen was not such a fan of doctors' offices (wonder why?) and wanted nothing to do with anyone wearing scrubs or carrying a stethoscope. The kid is no dummy, he'd had enough! He even let Judy carry him to the other exam room to wait for his appointment with Dr. Gazak.

When Dr. Gazak came in the room he was greeted pleasantly by Owen, instead of the uncertain once-over that had become fairly common. Owen has always loved Dr. Gazak, but he also fell into the category of "I'm going to be a bit on guard with you since I'm not sure what your intentions are". After exchanging pleasantries, Wes and I both noticed Dr. Gazak holding Owen's ultrasound photos and were anxious to hear the news. The news was: Owen's ultrasound looked wonderful and he is doing great. I was able to breathe a tremendous sigh of relief. I had been so scared that we may hear something unexpected, and it was just awesome to hear that my Little Man is really better. His right kidney (as you may remember this was the one that sustained the most stress due to the reflux) has grown substantially in the past six months. It had been a bit on the small side due to its having been battered by Owen's disease. Also, the images showed no substantial hydronephrosis to speak of. This is a first. I asked about any further increased risk of infection for Owen and Dr. Gazak said it isn't really something to be extra concerned about. He said if he did develop an infection, it would be like that of a "typical" child and would most likely remain a UTI or in the worst case a bladder infection. I have actually been given permission to stop worrying about Owen's kidneys! I'm not saying I'll have an easy time doing it, but it sure is an awesome goal to shoot for.

Owen doesn't have to go back for another check-up and ultrasound for another 9 months. We have graduated from bi-annual visits to every 9 months!

As I've said so many times, I feel so blessed and I am so proud of Owen for coming this far. He really is amazing. I also feel truly blessed that so many people have taken interest in his situation and for the outpouring of caring love and prayer. Thank you, again and again and again!

A life saved

2010-10-14T19:44:00.002-04:00

Two years ago today Owen had his first of six urology surgeries to save his kidneys and ultimately his life. His first surgery, a vesicostomy, alleviated the pressure that his bladder reflux was inflicting on his kidneys. Unfortunately it was not a permanent fix, and he went on to have surgery about every two months to bring him closer to where he is now. As of his last urology appointment 6 months ago, his reflux was resolved. His kidney function has remained normal, which is wonderful. Tomorrow we go for another 6 month follow-up appointment with Dr. Gazak, Owen's life saver. We hope and pray that things will look good as they did at his last appointment. Of course these appointments are always scary and cause quite a bit of anxiety. The waiting and wondering is so taxing.

Vacation, Business and a Birthday

2010-10-13T21:19:00.005-04:00

That's right, I'm behind again. Things have been crazy busy here as usual. Here's a quick run-down.

At the end of September Wes and I were able to travel North sans kiddos for the wedding of one of Wes' childhood friends. The boys were in good hands as my parents, aunt, sister and brother-in law came together to watch them for the long weekend. They had so much fun I doubt that they even realized we were gone. We made the drive, stopping for 4 hours in Richmond, VA for Wes to meet with a colleague and look at some equipment. This was no fun at all, as it is a long drive and I just wanted to get there. We arrived at Wes' parents' house in Pennsylvania just in time for dinner. This was only the third time that I have been back to our hometown in Pennsylvania in the more than two and a half years since we moved South. It still feels strange for me, especially staying at my in-laws' home, which is where Wes grew up and lived while we were dating. Friday we had a nice day hanging out and running some errands before heading to NYC for Eric and Abby's wedding.

The wedding was beautiful. Wes and Eric met when they were 12 years old and grew up together in the same neighborhood in Pennsylvania. After high school they went their separate ways, but kept in contact. The wedding was at St. Patrick's Old Cathedral in Manhattan and the reception was at the W Hotel in Union Square. Both beautiful. Being back in NYC brought back a lot of memories from visits in the past. I guess in general living in such close proximity to Philadelphia and New York City for all of those years is just completely different than living in the suburbs of Charlotte on a gorgeous lake where life just moves at a slower pace. It was just wonderful to be able to make the trip, but made me realize how much I love where I live now.

We got home from our trip (which totally wrecked me) on Sunday, just in time to celebrate my dad's birthday. It was great to see the boys after being away. Wes then had to leave to go on a business trip that next Friday. His week was a crazy one, preparing for the trade show that he was to be attending in Chicago. He was gone until the following Thursday, making for a long week for all of us. Again, I am lucky to have family close. I am especially blessed to have a family in which we all stick together and help each other. My sister and brother-in-law watched one of our dogs and the entire family pitched in to help me with the boys. It made it a whole lot less stressful than having to be a solo parent for an entire week. As I've said before, it really helps that my boys have such a close relationship with their extended family. Regardless, by the time Daddy finally came home I don't know who was more excited- me or the boys!

This past weekend, Saturday to be precise, was Wes' birthday. My darling husband turned 30! He jokes that he is now an old man, but 30 is by no means old. I am proud of all that he has accomplished in his 30 years and the man that he has become. It is hard to believe that I have known him since he was 16. We truly have been through so much together. Wes' parents were able to be here visiting and celebrate the birth of their youngest child. It was very special for our family!

Two Year Orthopedist Update

2010-09-28T20:21:00.002-04:00

Last week Owen had his 2 year-old follow-up with his orthopedic surgeon. The appointments start out with x-rays that require Owen to stand flat footed (with his left leg on a block, making it even with his right leg) with his back against a board containing the x-ray film. The board also has sort of a height chart to make it easier to measure his bones. As with any x-ray, he can't move. Reminder: he is two so he moves a lot, plus he HATES these x-rays so it always takes several attempts. Oh yes, the most fun part is that I can only hold him still in a very specific way. I can hold onto his upper body (sort of pinning him against the back board) and I can put my hand on his knee. I am not allowed to touch any other part of his lower body. Doing so will obstruct the view of his other bones and joints (hips, femur, tibia) which are very important for the doctor to see.

To make a long story short, the appointment was pretty much status quo. Allow me to share the "news" with you utilizing bullet points or this could turn into a novel.

-Hips look good. Both in the socket, growing the way they should be and providing an excellent foundation for Owen's lower extremities, which is vital.

-No need for a heel lift for his left shoe. He is getting around fine, just like any "typical" kid and his compensation for the length discrepancy is not doing any harm to his back, hips, muscles, etc.

-His left tibia is still just a tiny bit short. That discrepancy seems to have stayed about the same and the doctor still does not expect to have to lengthen his tibia.

-Owen's left femur continues to grow and is proportionately shorter than the right femur, which is what makes his left leg shorter. We have known since very early on in this process that the discrepancy in his two legs would increase, but that the discrepancy should remain proportional. His left foot hits at about his right ankle. According to the measurements at last week's appointment, the discrepancy is now just a bit less than 4.5 cm. Last year it was 3.5 cm. I knew this would be the case. I was prepared as much as I could have been to expect a larger difference. That doesn't mean it made me happy. I had hope that maybe it would slow down and his left leg would catch up a bit. The doctor never gave me any reason to hope for that, but look at everything that Owen has done so far and all of the ways that he has proven the doctors wrong. I have been praying for another miracle, and I will continue to do so.

-The unofficial plan was originally that Owen would probably have 2 surgeries to lengthen his leg, one around age 8 and the second around age 14. In the past year, pediatric orthopedic surgeons have begun performing the first lengthening surgery around the age of 4 in some patients. Last year Owen's doctor told us she wasn't convinced that was a great approach. I don't like the idea either, but for more practical "mommy reasons". The possibility was discussed again last week. Owen's doctor seems to have partially embraced the idea, but doesn't use the approach with every LLD patient. After much discussion we decided it was not the best plan for Owen.

-Owen's doctor showed me the x-rays of one of her LLD patients that just went through her first lengthening surgery. It was terrible, awful, heartbreaking, overwhelming and literally almost made me get sick. I can't even get into what is done and how the x-ray looked right now. It is too much. I told the doctor that I hate thinking about this, let alone seeing it on an x-ray. Her words: "I know, that is why I am going to keep showing it to you until it is time to lengthen Owen's leg." I love her. She is wonderful and understanding and knows just how to help me get through this extremely difficult situation.

So that is it in a nutshell. It is hard going to the follow-ups and hearing the measurements. We are lucky that Owen will be able to have his leg fixed, that he is doing so well in spite of his LLD and that it is not life threatening. Still, each orthopedist is like a slap in the face. A reminder that yes this is a reality and even though it can be fixed it will be a difficult process. I am thankful we don't have to do it again until next year.

Back to School, Back to the Doctor

2010-09-20T21:54:00.006-04:00

Carter was scheduled to start pre-kindergarten on August 30. We came home from vacation, only to realize that Carter brought pneumonia home with him. It wasn't a terrible case and was knocked out with a course of antibiotics, but he did miss his first week of school.

When he was feeling better and it was time to head off to pre-K, he was ready.
Carter has a wonderful teacher this year. If I could have chosen qualities I wanted his teacher to have and created a teacher for him, she would be a perfect fit. I just love her and so does Carter. He is learning so much and really thriving. We are so proud of him!

Speaking of illnesses, we have also had our first trip to the doctor since school started. I had to pick Carter up on Friday and take him to the doctor because he was crying that his ear hurt. He ended up having a double ear infection. He had ear tubes and the right one fell out months ago. At this visit we found out that the tube in his left ear is no longer in his ear drum, but in the ear canal and will likely fall out soon. Ugh!

Celebrating Six Years

2010-09-19T19:34:00.002-04:00

Yesterday was our sixth wedding anniversary. Not surprisingly, I found this hard to believe. I'm like that with milestones. They sort of sneak up on me. I am busy living life and all of the sudden I am hit with a reminder of the passage of time. Most often it is a good feeling because I love all of the blessings in my life and have no regrets. I love the memories and feel quite nostalgic. On the other hand, sometimes looking at the ups and downs of life (mostly the ups) kicks me in the butt, reminding me to cherish every moment. Time really does fly when you're having fun.

I did have a point. Our anniversary. On September 18, 2004 I stood wearing a white (well, more of an ivory/antique white) dress in a gorgeous church next to a gorgeous man and vowed to love him for the rest of my days. I still get a bit choked up thinking about our wedding ceremony. Thinking of the vows we uttered in front of God and an entire church full of family and friends is just overwhelming. In a good way. At the time the day just felt so huge. I remember the excitement and feelings of joy of our wedding day like it was yesterday. And that is what I had hoped for. While my wedding day was hugely important and I felt so wonderful marrying my very best friend, I was also extremely aware that it was bigger than just that day. Six years later, even as I look back on our special day, I am also looking forward to the future we ahead of us. I have a wonderful, loving and caring husband. We have two beautiful children who are blessed to have such a wonderful, loving and caring father. It is a lot of fun to remember our beautiful wedding, but much more important for me to celebrate our marriage.

I love you Wes. I can't wait to continue to grow together and to make more memories. I feel extremely blessed to have you as my partner as we navigate this sometimes crazy, and always exciting, wonderful life that we live.

Beach Boys and a Birthday

2010-09-08T21:17:00.012-04:00

I have come to end my hiatus from the B-Hive with tales of our family vacation. Oh yeah, my Little Man turned two while I was gone. It was a very special and emotional birthday. I am so proud of Owen and so proud of how he fought to make it to this day.

At the end of August, we took the kids to Myrtle Beach for our first beach vacation. It was a blast. My sister found a great deal on a long-weekend house rental so we decided to really make it a family affair. My parents and my sister and brother-in-law all came along. It was so wonderful that we all got to relax, have fun and spend time together. Wonderful memories were made.This was Carter's third trip to the beach and second trip to Myrtle Beach. He made a day-trip to the Jersey shore when we live "up North" when he was about 4 months old. When Carter was just a bit older than Owen we took a trip to Myrtle Beach. That trip was in March, and due to the weather it wasn't a true beach vacation. This was the real deal, and also Owen's first beach experience. The best part of the trip for me was watching my boys, experiencing it all through their eyes. True to form Carter, usually quite active and full of spunk, was quite hesitant and timid when it came to playing in the ocean. While Carter clung to us and ran for a towel to wipe the saltwater from his eyes, Owen was fearless and would have been in the water over his head had he been allowed. After the first day Carter was a little more brave and Owen settled down and respected the danger of the waves. Here are a few of the many photos of the boys loving the beach.

Owen checking out the sand for the first time.Carter playing in the sand.Owen can't wait to see the ocean.Carter running toward the waves.Owen playing in the ocean with Daddy.Carter and Aunt A playing in the waves.Carter and Aunt A running on the beach.Mama and Owen playing in the surf.Owen loving the ocean.
Carter and Aunt A playing "I declare war".The boys playing cars before starting the day.Owen thought this lion statue in our rental house made a great pet. Here he is feeding the lion a lime.The boys on the beachMama and Owen on the beachSurprise Mama, here comes the water!Playing in the wet sand.

Owen loves the feeling of the wet sand.Carter playing with Pappy in the ocean.Sisters on the beach.Aunt A playing with the boys in the pool.Pappy and Uncle Justin playing catch with CarterMy dad wrestling a gator at the Alligator farm.Aunt A and Carter sitting on a gator.Daddy and Owen at the Alligator farm.Lots of Alligators resting in the shade.Mama and Carter before going out for dinner.Standing on the dock with the boys.
The family at Murrel's Inlet

Here are a few photos of my Little Man's birthday celebration!

Wes and me before leaving for Owen's birthday dinner.Owen opening birthday gifts. Owen admiring his new dinosaur puzzle.Singing Happy Birthday to my baby, err big boy.
Owen pigging out on his cupcake.

If you have made it through this entire post, thank you. I promise not to stay away for so long this time!

T(wo) Minus Two Months

2010-07-01T21:56:00.002-04:00

On Monday Owen was 22 months old. It doesn't take a math whiz to figure out what that means... my baby will be 2 in just 2 short months. Little Man is almost two! I really don't know how this has happened. I am always talking about how time flies, especially when it comes to my kids growing up, but seriously? This is crazy.

It should come as no surprise that Owen continues to amaze us each and every day. He continues to grow, thrive and show us more and more of his unique personality. One thing that I find very cool and different about watching Owen grow up compared to watching Carter at this same age is that it is well, different. For Father's Day I made Wes two photo books chronicling Owen's first year of life, just like the two books I made for him chronicling Carter's first year of life. I made the books on shutterfly.com. There are two ways to compose the books. The first is to choose your photos and let the site "auto-fill" the pages for you. The second option (which is the one I used for all of the books) is to upload the photos and place them manually in the book. This method is much more time consuming, but also allows for much more personalization. In this case, the more personal the better. My point, and I do have one, is that making the books took me FOREVER. The great part about the project was that in order to complete it I had to go through all of the photos that I have taken since Owen's birth, which has literally got to be close to a thousand photos. What better way to remember the journey that our family has been on since the Little Man's birth?

People are constantly telling us how much Owen looks like Carter. He has even been referred to as mini-Carter quite a few times. It is true they do look a lot alike. Almost like they are brothers or something. While compiling photos of Owen and our family during Owen's first year of life, Carter became very interested in looking at photos on my computer. He began to ask, "Mama, is that me or Owen." Besides the fact that Owen was born with a cleft lip and Carter was not, there are many ways that I, as their mother, can tell them apart. Ways that I am not sure would be obvious to the average Joe. The differences don't stop with their physical appearances. As Owen continues to show us his wonderful personality, I just love the unique qualities that he possesses. Both of my boys are so funny, but each has their own sense of humor. I love that Owen loves to make people smile. Both of my boys are caring. Owen shows empathy in a way that I believe is uncanny for an almost-two-year-old. I was reminded of how caring he is once again tonight. Carter is sick with a very bad ear infection and most likely also a virus that has been going around. It came on suddenly (just this afternoon when he spiked a fever of 103 degrees) and Owen picked up on the fact that his big brother wasn't feeling well very quickly. Once he had that figured out he made it his business to check on Carter's well-being for the rest of the night. All evening it was: "You ok Carta?" and "It ok Carta". He is always this way. He is very intuitive when it comes to the feelings of others. He is always inquiring as to peoples' well-being and reassuring that "It ok". I love it. It cracks me up and also makes my heart happy.

As usual, the passage of time and watching my children grow and change is bittersweet. It always feels like time is flying and I often feel the urge to freeze time. On the other hand it is wonderful to watch them grow and change. In order to find a balance between these two feelings I try to remind myself to cherish each moment. After all, before I know it Owen is going to be two! My babies aren't quite babies anymore, but they sure are two of the most wonderful boys that I know.

Kidney Biopsy

2010-06-28T11:37:00.002-04:00

I am still having issues with my kidney. Same symptoms and chronic pain. After doing another 24 hour urine study, my nephrologist decided that the next logical step would be for me to have a kidney biopsy.

Wes drove me to the hospital last Thursday morning. After much confusion on the part of the hospital staff as to where I was supposed to be going (I knew exactly where I was supposed to go) I ended up in Admitting where they got me registered and then took me to my room. I had to have bloodwork done before the procedure to make sure that my blood was clotting properly. My nurse came in and got me into a gown. I explained my situation to her. I will not get into it here, but all you need to know is that I am terrified of hospitals. Also, these medical professionals thought that they were going to be performing the kidney biopsy without sedating me. Wrong! I seriously would have taken the IV out myself and left before letting that happen. So the waiting began. Wes and I waited and waited. The nurse came back in to put my IV in. I have had a lot of IVs and this was by far the worst one ever attempted. She started out trying to put it in my right hand. It hurt like crazy, I knew she hadn't gotten the vein even though I wasn't looking. (I find things like this easier to cope with if I don't look at the needle, see the blood, etc.) She kept trying to flush it with saline and it was not flushing. It just kept causing more and more pain. Wes was watching her and said that he couldn't understand why, but after trying to insert the IV into my vein, she kept pulling up on it which was lifting the skin on my hand. No wonder it hurt so much. I finally told her that I could tell that she clearly had not gotten the IV into the vein properly and asked her to try somewhere else. She got the IV into my left hand without too much trouble. The only problem was the placement of the IV made it painful to use my left hand.

My procedure was supposed to be at 1 pm. By 12:45 we still hadn't seen anyone from phlebotomy. I knew I couldn't have the procedure without them testing my blood so I was getting more and more anxious. I called the nurse and we asked about it. Just as she was about to call them again someone showed up to take blood. The nurse was also able to give me medicine for anxiety, which helped some.

When they were finally ready to take me downstairs for the procedure Wes followed along behind the stretcher, keeping his promise not to leave my side until someone forced him to. We met a few of the radiology technicians while we were waiting. They were very nice and helped take my mind off of how scared I was. I was taken into the room where the procedure was to be done and we talked to the Interventional Radiologist who was going to be doing the biopsy. He was a very nice man who has been performing kidney biopsies for 18 years. He explained the whole procedure along with the risks associated with it. I was able to ask him questions, one of which was my concern about the fact that they usually biopsy the left kidney. That did not seem like the best option in my case because all of my kidney pain for the past 7+ months has been on the right side. Now that could be due to something as simple as stones only forming in that kidney and have nothing to do with any disease they are trying to rule out, but if they biopsy the right kidney and find nothing we will feel more confident with the results than if the tissue had come from the left kidney. He had one of the technicians use the ultrasound machine to scan my kidneys and said that he could easily access either one, so we decided to biopsy the right kidney. It was funny when she had the wand over one of my kidneys, the doctor pointed at the screen and said "that is what a kidney looks like". Wes and I both laughed and explained to him that we are unfortunately very aware of what a kidney looks like. Wes told him that I can read renal pelvic ultrasounds. We told him a little bit about Owen's history. He told us how much he likes Dr. Gazak (I told you, he is everyone's favorite radiologist) and it also gave him a better understanding about some of the reasons I was so scared to be there.

A nurse came in and got me all hooked up to monitor my heart rate, blood pressure, pulse ox. etc. and then gave me some medication to sedate me a bit. The procedure didn't take long. He put some numbing cream on my back and then injected some of the same numbing medication into my kidney. It burned horribly, felt like acid going in. After waiting for that to take effect he went into my kidney with a special biopsy needle (which sounded exactly like a staple gun) to remove a piece of the kidney. He did this twice. The first time I only felt pressure. The second time he must have hit a spot that hadn't been numbed because it was extremely painful. The sedation helped make it possible for me to tolerate the procedure, but had totally worn off by the time I got back to my room. Wes went to our favorite restaurant in the area, Hawthornes, which is where we used to get dinner when Owen was in the hospital. After eating together and Wes asking me several times if I was going to be ok, he left to get the boys from my parents house and be with them for the night.

I was on bedrest for 8 hours after the procedure. Not only was I not allowed to get out of bed, I had to lie flat on my back. I am very much a side sleeper so that was very hard. I was able to come home Friday afternoon. I am still in a great deal of pain, which is normal. Lots of kidney pain, but also muscle pain from the force of the biopsy needle and how far down it had to go to get a piece of my kidney. Unfortunately I still have the least pain when lying flat on my back; I have to be very careful not to move or bend too quickly. I can't yet move the upper part of my body, but have to kind of plan each move and think about what is going to cause the least amount of pain.

When I left the hospital they said I could have the results as early as tomorrow, so our fingers are crossed. Thank you to everyone who has been supportive through this process!

13 Years and Counting...

2010-05-25T21:31:00.004-04:00

Today marks the 13th anniversary of the day that Wes and I started dating. Yup, for those of you who didn't already know, we are high school sweethearts. We started dating when I was a freshman and Wes was a sophomore. Wow did I love that boy, and wow do I love this man even more. We have been through so much together, both good and bad. There truly isn't much I would change. Everything that we have been through has made our relationship and our love that much stronger and deeper.

One thing that I will never forget is when we went for pre-marital counseling with the priest at our church that we hoped would join us as husband and wife. She said something like "I have never married a couple as young as you two are." (We weren't THAT young. We had finished college and already been together for 7 years) I saw this as irrelevant. Then she asked, "You have never dated anyone other than each other. How do you know that you want to commit yourselves to each other for life?" My answer- "Correct, he is the only man I have ever dated, but I have had plenty of relationships." This elicited quite a strange look. I continued, "Neither of us is the same person that we were when we began dating in high school. We have evolved several times into different people. The only difference is that we did it together. We grew up together and because of all of the different people we have been and all of the different relationships we have had I am perfectly sure that I want to commit myself to this man for life." I may be paraphrasing slightly, but not much. That is what I said in a nutshell. She loved my take on our lives, love and relationship and said that she was happy to marry us.

I digress. Today I feel very blessed that the super cool track-team captain asked me to be his girlfriend. Truly, we are lucky to have found each other and to have chosen to commit to one another.

Our New Addition

2010-05-22T19:10:00.002-04:00

We are getting a new puppy. What did you think I meant?

We have a 7 year old Golden Retriever, Maggie. She was my first baby. Almost 7 month ago we had to put our 5 year old English Bulldog, Bettis to sleep. It was terrible and still makes me sad everyday. He is greatly missed. I knew that we would most likely get another dog before Maggie passes on (which will hopefully be a long long time from now) because Wes and I both love dogs. We hadn't really talked much about it because we were both missing Bettis so much.
Fast forward... Wes took the interior cushion of on of my dad's boats, which his dad is purchasing, to this place that recovered the seats for one of his other boats. These people happen to also breed Shih Tzu puppies and happened to have a litter of puppies about 2 weeks old. Wes fell in love with them. When we have talked about getting another dog, he has always talked about another Bulldog and I've said we have to wait until the kids are older because frankly they are big and dumb. Never did I think this man would ask me for a Shih Tzu. After much deliberation (Wes is impulsive and I think of every possible scenario/problem that may arise) we decided not to get the puppy. The next day it became clear that Wes really really wanted her so we went to look at the puppies. Of course that meant we were going to adopt her because I would obviously fall in love with her. We put down a deposit and she is ours. She will be getting her shots this Tuesday, May 25 (also mine and Wes' dating anniversary) and we might be able to get her after that. We are really excited and can't wait to bring her home. Wes has already gotten her food and water bowls, puppy food, a harness and leash and toys. He is super excited! Below are some pictures of our little Stella.

Stella sleeping on her brother.

Me holding Stella

Two sisters and their little brown brother

Three cute pups!

Stella and her sister

We are certainly in for an adventure training this puppy and integrating her into our family, but we are very excited and (sort of) ready for the challenge!

Hand, Foot and Mouth- Oh My!

2010-05-21T21:06:00.003-04:00

This week has been quite eventful (read crazy and exhausting). Monday morning Carter went off to school feeling and acting absolutely fine. We got a call in the early afternoon that he was a little warm (about 100.5) and acting lethargic. Wes went to pick him up and took him to the pediatrician, as we are fairly paranoid (ok I am fairly paranoid) about the fluid behind his ear and him developing an ear infection. After examining him and finally looking into his mouth, the doctor declared that Carter had hand, foot and mouth disease. He only had a fever once and the sores remained only in his throat. The sores tend to spread to other parts of the body, mostly hands and feet, in younger babies and toddlers because they tend to put their hands and feet in their mouth and then touch other parts of their body, which spreads the sores. Since it is a viral illness there is no medication to treat it. Just treat the symptoms. Of course HFMD is highly contagious. Translation: Owen is going to soon have HFMD also. Owen had a routine follow-up ear check at the pediatrician on Thursday to make sure that the ear infection that he had two weeks ago was gone. He had been extremely fussy so I was worried that the ear infection had lingered or he was starting to exhibit symptoms of HFMD. The pediatrician (not the one we normally see, his partner) examined him and said that he was fine. Fussiness was chalked up to teething. Last night at around 10 Owen woke up screaming with at 101.9 degree fever. This morning Wes looked into his throat with a flashlight and discovered... you guessed it, white spots. Owen now also has HFMD. Here's hoping that his sores don't spread either and it is short-lived.

We Should Do This More Often...

2010-05-15T10:07:00.002-04:00

Meaning that I should write blog posts so you can read 'em. I can't believe it has been so long since I have posted. A lot has been going on and I've just felt too emotional to write. Usually writing is a great outlet for me, but I have come to realize that sometimes it isn't the appropriate outlet. That being said, I'm back. I'd say a bullet-point style update on all members of the family is in order.

Wes:

- He is training for a tri-athalon. He is a runner and has completed a marathon, so that part shouldn't be a problem. Next he started biking, but that doesn't come as naturally to him as running. Swimming. That is the part making him nervous. He has improved a lot since starting his practice at the Y, but still finds it the most difficult aspect. I can't do any of it well so I'm impressed already.

- He has had some changes at work. Confusing and difficult to explain. Basically he is now helping to manage 4 companies instead of just 1. Same job, same goals, just a bit of reorganization. Also, he is the owner of one of the companies. I am very proud of him.

Dara:

- As you may know I have had chronic kidney stones since I was pregnant with Owen. My most recent battle with my kidney has been going on for about 6 months now. I had quite a few tests ordered by my urologist. He found something minor, but nothing that really explained the stones. He referred me to a nephrologist. At my second visit I was told that my citrate level was dangerously low. Normal people should produce 600-750 mg/day and my level was 124 mg/day. He put me on a medication to hopefully increase my citrate level. It is a powder/crystal substance that I have to stir into 6 oz. of water and drink once a day. It is gross and makes me very nauseous. As of right now I am passing another stone and in a great deal of pain. The problem with the citrate deficiency is that it alone causes kidney pain when the level is so low because my kidney is working way too hard to do its job. Citrate is an element in the kidneys that is supposed to bind to waste and help remove it from the body. Since I don't have enough of it, my kidney is essentially trying to use what it does have to remove waste. The result is pain and the formation of kidney stones. I have a follow-up appointment with my nephrologist on Wednesday. I have lots of questions for him.

- I am starting back to work part-time on Monday. I am so not ready. I set the date maybe a month or so ago and now it is almost here. I will be going back to the same job I had before Owen was born. It is nice to have the flexibility to start out part time and very nice that I will be working with family. I went back to work half days after my maternity leave after Owen was born, but quickly realized that it wasn't going to work out. Owen was so sick and his health care was a full time job. I am so lucky that my mom is going to be watching him. He is doing well, but I still have so many issues myself with him having been so ill. We all went through so much and it is just not something that is easy to get over. I trust my mom implicitly. She loves him and he loves being with her. Most importantly, she knows what happened to him and what dangerous signs to look for. I don't expect that anything will happen, but if it did she would be about as likely to know it as me. My boys and I are very lucky to have her. Even still, it is going to be so hard for me to leave him. This is a huge life change and I don't do so well with change.

Carter:

- A few months ago he had his regular appointment with the ENT. The doctor found that he had 60% fluid behind his right ear, which is the one that the ear tube has fallen out of. The doctor thought it may be as a result of allergies and put him on an allergy/decongestant medicine. He was on that for a month and just recently had his follow-up visit. He had a sinus infection, which we had no idea about because Carter very rarely acts sick. His nose had been runny, but we attributed it to allergies since he had no fever, wasn't acting any differently and hadn't complained of not feeling well. When the doctor examined his ears, he still had at least 60% fluid in the right ear, if not more. Off to the Audiology department he went for a hearing test, which he passed with flying colors. All of the results were above normal. The doctor told us to discontinue the allergy/decongestant medication since it didn't seem to make a difference. Since his hearing is fine all we do now is wait and hope that ear doesn't get infected. If he starts having infections again, or if he gets a really bad infection he will need to have another tube placed. The doctor said if that occurs they will also take his adenoids out at that time. I am praying we don't end up going down that road.

- Carter had an ongoing issue with one of the other boys in his class at school. He has known this boy for a long time, as he went to the last school Carter went to as well. This child, we'll call him Joe, used to be the quietest little thing. I think while Carter was at the last school I heard Joe talk maybe twice. Fast forward to the past month and Carter started coming home telling us that Joe was saying bad words at school. I talked to the teacher, director and owner about it. Sure enough, just about everyday Joe was swearing. Mainly words beginning with F and D. Carter repeated each of the words once, not knowing what they meant and not even knowing they were bad words because he had never heard them before. The F word was repeated early on on the playground. It happened right before I picked Carter up from school. When his teacher told me what he had said I almost fell over. I had no idea where he had heard that word. I was appalled. First of all that my son, my four year old son had said that word and secondly because I was thinking "oh no, this teacher thinks we talk to him like that." Luckily she had heard Joe say the word on the playground and Carter repeated it right afterward. Mystery solved. Carter was disciplined. I explained to him that we never used that word, it is a very bad word, etc. I explained further that he knows a lot of good words and he should use those words to express himself. I also told him that he should never say a word if he doesn't know what it means because it might be a bad word. Problem solved, right? Wrong. For a while he came home telling us that Joe had said bad words that day. Each time I told him that those words were very bad and that when Joe talks like that Carter should tell him he doesn't like it and walk away. One morning at home he had asked Wes for something and Wes said no. Carter started to have a tantrum, which included the use of the D word. Again he was punished and again we explained why we don't talk that way. Also, I marched into school that morning on a mission. I was not going to have Joe bullying my child and I did not want my child going to school (a private preschool that I pay for him to attend) everyday and hearing that kind of language. If I don't talk to him that way at home I certainly don't want him hearing it at school. The situation escalated. When the school had a conference with Joe's parents they seemingly had no idea where he had heard such language. Right. It didn't stop after the conference and as of the beginning of this week Joe was removed from the school, allegedly through mutual agreement between the parents and the school. I don't really care how it happened, I'm just glad that Carter isn't having to deal with it anymore. I also feel bad for Joe. He is also only 4. He is learning that behavior from somewhere and it makes me sad. It really is a shame that some kids grow up in environments where molding them into strong, healthy, happy individuals is not a priority.

- Carter will be moving to the pre-K class at school somewhere around the end of June/beginning of July. We are very excited and think it is going to be really good for him. I can't believe in just over a year he will be off to Kindergarten. My baby is growing up so fast!

Owen:

- What can I say, Owen is Owen. He will be 21 months old at the end of this month. Health-wise he is doing great. We have no specialist appointments until September. He is very active, running around after his brother, climbing everything in sight. He is funny. He loves to make people smile and laugh. His speech has exploded. He has so many words and is saying new ones every day. He will repeat anything on command. He loves to be read to as well as to look at books on his own.

- He is a bit of a picky eater. Well maybe that is too harsh. I remember Carter going through a stage around this age where he was not as willing to try new foods. Owen usually will eat either a really good lunch and then a mediocre dinner or vice versa. He also doesn't have all of his teeth yet, so if his teeth are bothering him he is more likely to be picky. We are working on it. He is gaining weight, so no problem there. The pediatrician is not at all concerned and sees it as a phase.

- Owen is going to be 2 at the end of the summer! How in the world did that happen?!?

Thank you for reading. I am back in the game and am going to be a better blogger, I promise!

The Other Man- A True Lifesaver

2010-03-17T16:40:00.002-04:00

I love my husband and two boys more than anything. However, for the past 18 months there has been another man in my life. Not to worry, it is not a secret. I know I have expressed my love for him at least a hundred times. We all love him. I am speaking of Owen's urologist, Dr. Gazak, of course.

Last Wednesday I took Owen to the hospital for bloodwork that was ordered for Dr. Gazak in preparation for Owen's check-up this past Friday. It was the most calm I have ever seen Owen at the lab. Actually, the most comfortable I have seen him in any medical setting in quite a while. He has become understandable worried, even frightened, of medical professionals. If you are wearing scrubs or wielding a stethoscope does not want you anywhere near him. I was shocked and very proud of him.

Friday was Owen's first check-up with Dr. Gazak since the surgery in January that resolved his bladder reflux. He has been doing well, acting fine and perfectly healthy. Still, I could not help but worry about the results of his tests. It goes back to what I mentioned in a previous post about how difficult it is to wrap one's mind around such a huge change, even a wonderful one such as the huge improvement in Owen's health. Like I said, there isn't just a flip to switch to turn off the emotions that come with caring for and worrying about your child with a major illness, one that we thought would be a lifetime disability.

Dr. Gazak was right on schedule on Friday, which is fairly unusually given the amount of time he spends in surgery and the fact that he is a very gifted surgeon with quite a lot of patients. After a very short wait Nurse Judy came to take us back for and ultrasound. Again, Owen did much better during the ultrasound than he ever has. He usually cries and moves around like crazy, making it very difficult for Judy to get good pictures and measurements of his kidneys. This time he lay very still, taking a peel and stick Bob the Builder off of the wall next to him and putting it back over and over. He even talked to Judy, smiled at her and was very pleasant. She was thrilled that she didn't make him cry for once. As she was doing the ultrasound, I could tell his kidneys looked good. We talked about it as she looked and measured. There was a tiny bit of hydronephrosis in his right kidney (the side that took much longer to heal and led Dr. Gazak to believe that the ureter re implant had failed when he went to take the stents out back in November). It was a very small amount. She had to look for it, whereas before there was a ton and it was completely obvious as soon as she scanned his kidney. She was unable to find any hydro on the left side.

After the ultrasound she took us down the hall to an exam room. Dr. Gazak was standing right in the hallway getting ready to review the ultrasound films. He greeted Wes, Owen and me and asked how we were doing. He asked about my kidney issues. I said, "that is another story." At that point I was just beside myself waiting to hear his take on things. I said, "you tell us". We went into the exam room where he thoroughly explained the pictures of Owen's kidneys to us. I love that he is still so thorough in his explanations despite the fact that he knows how much I know about Owen's urinary tract. He knows I want to know it all. He said that the hydro on the right side was basically nothing, not to worry. He went on to tell us about Owen's blood results. His creatinine level was great, his electrolytes were great. The only level that was slightly lower than normal was his CO2 level. This is a level used to measure kidney function, however it is not as crucial as creatinine levels. The CO2 level can also be slightly low because diet. For instance, Owen is teething something awful (and drooling like a St. Bernard I might add) so he hasn't been eating as well. Again, Dr. Gazak said nothing to worry about. The only other thing of note is that his right kidney is about 1.75 mm smaller than the left one. He said this was because it had been the victim of more "insult" than the left. When that happens, especially with severity of reflux that Owen had, it just takes a little while for the kidney to catch up. Also, two kidneys are rarely the same time.

He closed by saying that he looked great, his kidneys look normal. Normal. We kept saying normal back and forth. I don't think any of us really believe it. It still hasn't sunk in. Owen doesn't have to have blood work or another renal pelvic ultrasound for another 6 months. I truly never thought this would happen. It is just so wonderful, there aren't words to describe how blessed I feel. I look at Owen in awe of all that he is been through and as hard as he has fought to get here. We always knew he would be ok whatever his differences were. Even before when it seemed impossible that the reflux would ever be resolved, there was a plan. He would have been normal, Owen's very own normal. But now he is just normal, as in his urinary tract is normal. Amazing. Wonderful. Thrilling. Miraculous.

For the umpteenth time, thank you Dr. Gazak!

Hips Don't Lie

2010-03-02T19:05:00.003-05:00

Today Owen had a follow-up appointment with his orthopedist. We haven't been there in 6 months. The purpose of the appointment was to check the growth of his hips as well as measure his bones in order to keep tabs on his leg length discrepancy (LLD). We got to the office and Owen was doing laps around the waiting room. He would run past another waiting patient and stop to say hi. Again, he brought smiles to so many people waiting. He kept going over to the door that leads back to the exam rooms, looking at me and laughing. When it was finally his turn to go back I scooped him up and followed the nurse, knowing that his time for exploring and playing happily had ended. The boy is not a fan of doctors' offices, and really who can blame him. The nurse commented on how much he was running around and was happy to see it.

A radiology tech came in to get us to come take Owen for his x-rays. Wes and I both suited up with lead skirts (for lack of a better word) to protect us from the radiation. The way the x-ray is taken, Owen has to stand up on a step-stool looking thing with his back against the x-ray board. He has to stand with his left leg on about a 3 inch block. Today it was 2 boards and a children's Bible. I stifled a laugh at the irony of him standing on a Bible. He actually did well, much better than last time. He moved right when they took the first x-ray so another had to be taken, but last time we could barely get him to stand there.

The doctor came into the exam room and told us that his hips look great. That is one of the most important things with Owen regarding his LLD. First of all, he had hip dysplasia, so making sure his hips are developing and forming well is critical. Also, without the structure of a strong, well developed hip, a leg cannot be lengthened. Since that is what will correct his LLD, we need his hips to be in top notch condition. They look great, and hips don't lie! Great news.

We expected the discrepancy between Owen's legs to have increased. It did not. His left leg is still about 3 cm shorter than his right. It is GREAT that the discrepancy did not increase. The doctor (I don't know if I've mentioned but I love her) insists that it will eventually increase, but I choose to hold out hope that it will not. She watched him walk (and run and climb) and said that no way did he need a shoe lift at this point. I was thrilled to hear that. I feel that we should wait to open that can of worms until it is absolutely necessary medically. He gets around amazingly, and really doesn't even notice the difference. Even MORE good news, we don't have to go back for another follow-up for a year. A year. This is the first specialist that has allowed that long between visits.

We discussed the lengthening procedure. She believes that she will have to perform two lengthening surgeries. A bone can only be lengthened by 20% at a time. I don't like the thought of it, but the good news is that she feels she will only need to lengthen his femur and not his tibia. She thinks the discrepancy in the tibia will be so minor that the length can be made up in the femur. This is promising because only one bone will need to be broken. One thing that was quite shocking was when she shared with us that at the last deformity class that she attended, there was discussion about beginning the lengthening process at the age of 4. Previously we had been told age 8 at the earliest. I just didn't feel great about the idea of a leg lengthening surgery at the age of 4. She agrees, saying that she is not sure how comfortable she is with the idea. I am not sure how she is thinking about it as a surgeon, but as a mom who has a 4 year old I am aghast at the idea of keeping him non-weight bearing, about turning screws in an external fixation device to grow his bone when he can't truly understand what that means. After the lengthening is complete a child can walk, but it is very important not to bear weight during the actually process of growing bone. The screws can only be turned 1mm per day, so it isn't an extremely expedient process. The good news is that we still have 2 1/2 years of medical advancement and time for the medical to community to decide what is best. It is not a decision that needs to be now.

I think one of the most satisfying aspects of today's appointment for me is that according to what the doctor said when she first began seeing Owen, this would have been when he started to walk. Instead he has been walking for 8 months and is now running, climbing and getting around like he has no idea that he has LLD. Again, he amazes me, I am so proud of him. The doctor was too, it was clear.

18 Months

2010-03-01T20:08:00.003-05:00

Owen was 18 months old on Saturday. 18 months, a whole year and a half!? I know I have said this numerous times throughout the development of both of my children, but seriously where has the time gone? It is absolutely unbelievable to me that my baby is a toddler. In fact, I won't have it! He is my baby, end of story.

It is funny, because I remember this stage in Carter's development. I remember being frustrated because he was talking, but was still unable to fully communicate his wants and needs. We used sign language a lot with Carter. We tried it a bit earlier on with Owen and he didn't take to it. He talks quite a bit, but has fairly recently started to whine and show discontent when we don't understand what he wants. I'm thinking another shot at a few signs is in order for Little Man.

As always, watching these kiddos grow is amazing. Owen amazes me every day. His smile and laugh continue to be contagious. He and Carter just crack each other up. Once Owen gets a laugh out of you, he keeps on going until you are just in stitches.

I do not believe in comparing the abilities of my children (or children in general for that matter), but I cannot help but notice the difference between Owen and the way Carter was at this age. I believe the differences are in large part because with Carter I was a rookie, whereas now I am a seasoned veteran. :) In all seriousness, one minute I find myself thinking, "Owen seems so much younger than Carter was at this age." and the next minute trying to remember, "Was Carter doing that at this age." The former no doubt has a lot to do with all of the illness that Owen has been through. In a lot of ways I feel like we were robbed of a normal infancy with him. Of course we were not robbed, we are blessed for each moment he has spent as part of our family. Still, it is a fact that Owen's development has been different from Carter's simply because of his health issues. He has been through more than anyone should go through in a lifetime, let alone in 18 months. However, he has thrived, has hit every milestone. He is right on track. For that we are so thankful. As for wondering if Carter had done such and such by this particular age, that is where the differences come in. It intrigues me to no end to look at the personalities of each of these precious boys of mine. They are so similar, yet so different at the same time. Most importantly, they love each other so incredibly much. I hope they have that love always.

I find myself nostalgic for moments passed, sad because Owen is our last baby and he is growing up. But boy is it fun to love these boys and watch them grow!

A New Chapter

2010-02-02T20:22:00.002-05:00

In early October 2008 our lives were turned upside-down after Owen became extremely ill. We took him to a regional hospital, found out he was nearing the point of seizure and cardiac arrest, and were critical cared transported to a Children's Hospital downtown. You know the story, we spent 2 weeks there, much of it in the PICU as the doctors attempted to find a diagnosis. Owen was eventually diagnosed with Grade 5 Bladder Reflux and underwent surgery, a vesicostomy. That was the first of 7 surgeries that Owen has undergone. With the exeption of his cleft lip repair, all were urological surgeries meant to relieve the pressure being put on his kidneys. It has been a long road. My Little Man has fought like a tiger through all of it.

Surgery # 7 took place on January 18. We feared that the surgery would be postponed because of a repiratory infection that Owen developed that turned out to be the Roseolla virus. Luckily we were able to go ahead with the surgery. Dr. Gazak performed a cystoscopy, during which he removed the stent from the right side of Owen's urinary tract. He then did a cystogram, an x-ray to discern the level of reflux and the condition of the urinary tract. The cystogram was clear. The only thing he found was that the valve that he had created on the right side of Owen's bladder during the ureter reimplantation/bladder reconstruction surgery on October 19 was a bit weak. He was able to inject a shot of Deflux (a reflux medication) which is a binding agent that would strengthen the valve. The final result of the surgery- Owen's bladder is no longer refluxing.

Thus, the new chapter of our lives begins. We spent the first 16 monts of Owen's life worried and scared. He spent that time hurting, fighting and enduring surgery after surgery. We hurt and fought right along with our sweet Little Man. After an extremely negative x-ray after surgery in November, things didn't look so good for Owen. We were told that he would be ok, but would live with relux and the serious disablitiy of having a hole in his bladder to empty his urine for the rest of his life. It was devistating. That news has no place in this new chapter. After 16 months of awful illness, many hospital stays, countless visits to specialists and more worry and angst than I can express, Owen is out of the woods. Owen is healthy. Owen passes urine just like any other little boy. He made it. We made it.

Today I finally felt able to write this post. As wonderful as this news is, as excited as we are to have begun this new chapter as a family, as blessed as we are to have Owen's condition to have improved the way it has, it is also difficult to adjust. He was sick for so long, and all of the sudden it is as though a switch has been flipped. I love the switch. I am glad it was flipped. It is just going to take me a while to get used to this new lighting.

As always, I want to thank all of our family and friends who have kept us and especially Owen in their thoughts and prayers. It has meant the world to us, and we believe has been a contributing factor in where we are today. We feel very loved, and again we thank you.

Carter turned 4! (Oops, that was 2 weeks ago.)

2010-01-14T19:30:00.008-05:00

My first baby turned 4 on December 31. He always tells everyone that his birthday is New Year's Eve. We tell him that everyone is celebrating his birthday. Things have been crazy as usual so I haven't had a chance to post about Carter's birthday. I truly cannot believe that my baby is 4. He is such a big boy, there is definitely no baby left. He brings a smile to my face every single day, even on the days when he is a challenge. He is smart, sometimes too smart causing him to think he knows best. This has manifested itself in a lot of back talk. He is very strong willed. This can be both a good thing and a hard thing. The amazing thing is he is just. like. me. He even shoots me the same glare that I was famous for during childhood (ok, sometime now too) and the infamous eye roll that got me into so much trouble when I was younger. He sure does give us a run for our money some days, but he is also such a love.

It seems that he has grown up so much in the past year. It seems like there is such a difference from 3 to 4. Carter is in his first year of Pre-K right now. He will have 2 years of Pre-K because of his birthday and the cut-off for Kindergarten. He loves school. He is very social, so inquisitive and loves to learn. I look forward to hearing the things he comes out with. I enjoy that he so enjoys learning. Sometimes he even teaches us things!

One of the things that has made me so proud of Carter is how caring he is and what a wonderful big brother he is to Owen. He loves that Little Man so much. He is so protective of him and loves playing with him (at least most of the time.)

Carter, I love you big guy, and I can't wait to continue on this wonderful adventure with you!

Now for some photos of Carter's birthday!

Mama and Carter celebrating his birthday at school!

Carter eating a cupcake at school to celebrate his birthday.

Mama and Carter playing with his new PlayDoh set from Nana B and Pater B.

Daddy carrying Carter's cake.

Mama and Carter as we sing Happy Birthday.

Carter and his cake.

Pappy feeding Owen some cake.

Carter's Handy Manny cake.

Carter's new remote control Lightning McQueen.

Yay, PlayDoh!

Carter playing with his Mikey Mouse matchbox set from Aunt A and Uncle J.

Mama and the boys, my mom and Grandma- Four Generations!

Miracles do happen.

2010-01-06T20:41:00.002-05:00

We received wonderful news today at Owen's urology appointment. His creatinine level, which should be below 4 was 2.7. His CO2 level, which they would like to be at least 22 was 18. That level is lower because of an imbalance in the acid and base in his blood. Dr. Gazak said that is to be expected considering the amount of issues he has had with his kidneys. We are supposed to start giving him half of a children's Tums twice a day. Since they are chewable that may prove to be a problem, but we will see. This is such great news, his kidney function is great! Owen also had a renal pelvic ultrasound today. As the nurse was performing the ultrasound I was looking at the screen thinking to myself that his kidneys seemed to look a lot better, had a lot less black spots. I didn't want to get my hopes up or ask, I was so nervous. The nurse made a comment that she thought his kidneys looked good, but she sort of said it to herself. Still, I was afraid to ask.

We were moved to a different exam room to wait for Dr. Gazak. He came in with two sets of ultrasound photos and a smile on his face, saying "I think we have some good news." Owen's right kidney (the side that still has the stent in place) had no hydronephrosis at all. The left kidney had significantly less hydronephrosis (which shows up as a black spot on and ultrasound) than the ultrasound done in December. We are not facing ostomy surgery, Owen may not have reflux at all anymore. He may have a lesser degree of reflux on the right side. What we saw today shouldn't have happened. He shouldn't have gotten better this way, but he did. I truly feel like it is a miracle. Of course Owen is not out of the woods, but he is so much better off. We have so much hope. Owen will be having his stent removal surgery on Monday, January 18. Dr. Gazak will remove the stent from his right side and then do a VCUG to check for reflux. If there is still reflux on the right side and it is a low level of reflux, he will inject a medication called Deflux which would hopefully help reduce it further. The stent removal is an outpatient procedure. We are very much hoping that it goes smoothly and we receive only more good news.

Thank you all so much for your thoughts, prayers and support. It means the world to us.

Remember me?

2010-01-05T19:19:00.003-05:00

It has been quite some time since I have even thought about blogging. Usually writing is something that really helps me. Frankly, for the past month plus I haven't even felt capable of writing. My emotions have been all over the place, things have been crazy and at times putting one foot in front of the other has been hard enough let alone forming coherent sentences.

Owen had his renal pelvic ultrasound at the beginning of December. Most of you have probably heard about it by now. I don't have the energy to rehash the whole thing, but it was not good. In short: hydronephrosis in both kidneys. The left side, the ureter is just too floppy and can't push all of the urine to the bladder. The right side, there is too much pressure and the valve is not working, causing urine to reflux into the kidney. It was a terrible conversation. Basically, the reimplantation surgery in October did not work. Dr. Gazak said Owen would likely need to have another bilateral ureterostomy. He was going to have to take him back apart. After asking a million questions and my mind racing with a million more that I didn't know how to ask, I asked when he would do the reimplant again. How long would he have the ostomies this time? Dr. Gazak told us that he has never seen a reimplant work after failing the first time in a patient with reflux this severe. He said the best option long term may be to reconstruct Owen's bladder using part of his bowel, making it large enough to allow the reflux to occur. That would mean Owen would have a permanent hole in his belly leading to his bladder, which would need to be cathed every 2-3 hours to keep his bladder empty. Horrible, terrifying, unthinkable. I couldn't even stomach the thought for a while. I thought of every stage of his development through the fog of this possibility. He will be ok, he will live a normal life, but it will be hard. No parent wants to see his or her child deal with a permanent disability.

While I was digesting information, Wes got busy researching pediatric urology to find the best hospital in the country. Children's Hospital of Philadelphia is #1 and Boston Children's Hospial is #2. He called them both. The Chief of Pediatric Urology at Boston Children's couldn't wait to review Owen's case. In fact we heard from him yesterday. Basically he wants to see Owen and run tests that he has already had. He also recommends holding off on ostomy surgery right now. Wes also talked to Dr. Gazak's nurse and Dr. Gazak has been thinking about Owen's situation and seems to feel the same way as of a week or so ago. Wes will be calling CHOP on Thursday to make an appointment there.

Today Owen had bloodwork done to check his creatinine and CO2 levels, which are indicators of kidney function. He was a champ! Tomorrow afternoon he will have another renal pelvic ultrasound, after which we will speak with Dr. Gazak about how things are looking and the results of the bloodwork. Needless to say we are very nervous. Like I said, after we have more information Wes will be calling CHOP for an appointment.

This holiday season has been a difficult one, but also a great one. It was great spending so much time as a family and with extended family. It was hard because in this past month I have digested the information about Owen's condition, perhaps at times become complacent about it. I mean complacent in the sense that I stopped thinking about it 24/7. I am still paranoid that he will get an infection, I still worry about him and his future. On the other hand he is a happy otherwise healthy little boy. When people are around him they can't help but smile. He loves life, which makes me love life. I guess what I am trying to say is that I know that no matter happens with Owen's bladder, no matter what they have to do to "fix" him, he will still be my Little Man. He will still live a happy life, and most importantly he will still be loved just the way he is now. Oh, this is just so hard. The ups and downs and all of the emotion involved with watching one's child experience the difficulty of a serious illness. Did I mention that I'm nervous?

We are not done.

2009-11-25T18:25:00.002-05:00

Owen's stent removal surgery was on Friday. We expected to be done as far as urology surgeries after that. We are not done. I don't have all of the info about the next steps, but here is what I do know.

Dr. Gazak did a cystoscope to see what was going on in Owen's urinary tract. He removed the stents and then did a VCUG (voiding study). One side looked good and voided properly. The other side collected urine in the still large upper part of the ureter and did not void properly. As Dr. Gazak said when he entered the conference room to talk to us after the sugery "It isn't good." He was upset, we were upset. I cried because we were supposed to be done and we are not done. Dr. Gazak had to put the stent back in on the "bad" side. There are evidently a number of options at this juncture. Dr. Gazak said that he plans to proceed conservitavely. He mentioned a few options, but frankly Wes and I were just too shocked and devestated to ask a lot of questions. All I could think to ask him through my tears was, "Do you promise that you can somehow fix this?" Perhaps this was a totally inappropriate thing to ask of him, to ask him to make such a promise. He did however look at me and make the promise. He hugged me and promised me that he would fix it. I know he means it. I know he would not have promised me something that he could not deliver, not with Owen.

What we do know is that Owen is still better off than he was when he was 5 weeks old and first got sick. Dr. Gazak didn't do anything wrong, Owen's ureter just needs more. I just don't happen to know what the more is right now. I do know that Owen is still a happy, healthy Little Man. I know that I am sad, I wanted to be done. We are not done, but somehow or another it will be ok. Owen will continue to fight, we will continue to fight with him, and Dr. Gazak will do his part and keep his promise to fix my son.

Owen will be having a renal pelvic ultrasound and we will learn more about the more next Wednesday.

In other news I am actually in the hospital right now. To make a long story short I have a very bad kidney infection that has failed to respond to two seperate antibiotics. I had another follow-up with my urologist today. The infection has gotten worse and I feel worse. He told me I had officially failed outpatient treatment and had to be admitted to the hospital for treatment. I hate it and this is the last place I want to be, but I do need to consider the safety of my kidney.

Wonderful Friends

2009-11-08T09:50:00.002-05:00

I have a group of wonderful Mommy friends that I have had the pleasure of knowing since we were all pregnant with our children who are Carter's age. Their support has always been extremely important to me. We have helped each other through a lot of Mommy stuff. It is wonderful to have people that are going through the same or similar things that you are and to be able to talk about it. There have been so many times in the past 4+ years that I have wondered what I would do without them.

The kindness of these women has always been obvious to me. However, just last week I was blown away by just how kind and loving they are. 12 of my friends collaborated to give my family an extremely generous gift. In a box delivered by the postman we found toys for each of the boys (which they were thrilled by) a gift card for Wes and I with instructions to use it to order dinners in and enjoy our family as times have been so difficult lately, and a card addressed to me saying that something was on the way that would provide "Me time". I was touched, Wes was touched, I cried. I called my friend Jenn, the sender of the package to thank her. It was at this point that she told me to check my email for the "Me time" gift. Sure enough within 10 minutes I had in my inbox a gift certificate to a local spa. I will be having a hot stone massage.

I am so thankful to this group of women for always being there for me, always listening and offering advice and for being great friends in general. I don't think I could ever thank them enough. I love them all!

Kids Say the Darndest Things: Volume 2

2009-11-03T19:55:00.003-05:00

While we were in the hospital with Owen, my mom was driving with Carter. They passed a party store that had a huge blow up pumpkin on the roof. Carter was quite fond of this pumpkin and pointed it out excitedly each time we drove past it.
C: Grandma, look at the big pumpkin.
Grandma: That is a big pumpkin.
C: Am I going to be stuck with YOU for Halloween?
Grandma: Why are you not having fun with me buddy?
C: Yeah, I am.

Again while driving with Grandma while we were in the hospital with Owen.
Passing a field with grazing cows.
C: Grandma, the farmers need to come and get all of the milk out of those cows' gutters!

Yesterday while eating blueberry muffins for breakfast.
C: Mama, I have a really good sense of taste!

Tonight at dinner as Wes was telling me about a dumb man show that he was watching the other night.
C: (in a calm, but stern voice as if he were reprimanding a child) Daddy, I understand that you are very excited, but you need to give everyone a chance to talk. I need to sing a song.

The kid totally cracks me up.

Photo Update

2009-11-01T19:03:00.016-05:00

Here are a few (ok a lot) of the photos that I have not had a chance to post lately. All the way from our trip to the farm and pumpkin patch, to Owen's surgery and then Halloween. Enjoy!

Carter's first pony ride.

Owen hanging out.

Carter eating lunch at the farm.

Owen resting on the hayride.

Carter finally picked one.

Owen likes this one.

Carter really pondering the choice at hand.

Boys in the pumpkin patch.

Carter picking up a big one.

O checking out the pumpkins.

The great pumpkin search.

Owen in the pumpkin patch.

Carter feeding a peacock.

Mama and the boys at the farm.

Carter and Daddy looking at the baby pigs.

Carter and Owen at the farm.

Carter feeding the animals.

Carter and Daddy at the farm.

Carter batting

Grandma reading to Owen,

Owen reaching for Grandma's hand under the door.

Carter and Mama watching the Steelers game

Carter all ready for his sleepover with Grandma and Pappy.

Hungry and tired boy before surgery.

Owen drinking Pedialyte in the hospital after surgery October 19

Owen sleeping in the hospital October 21

Daddy holding Owen October 22

Owen laying with Mama October 22

Owen playing with Mama's phone.

Owen double-fisting Pedialyte

Grandma visiting Owen in the hospital.

O sitting with Mama playing with Daddy's Powerade bottle.

Owen trying to escape and explore. October 23

O and his balloons October 23

O eating graham crackers with Daddy- October 23

Possibly the cutest and saddest photo ever.

Owen in his crib October 24

Owen laying with Aunt A - October 24

Owen hidden by balloons in the hospital October 25

Carter the Cowboy on Halloween

Daddy and his Baby Bee on Halloween

Unhappy Baby Bee

Swine Flu Mama

Carter and Pappy at Trunk or Treat

Belated Update- Ups and Downs

2009-11-01T17:09:00.004-05:00

I have been meaning to update since we were released from the hospital on Sunday (last Sunday, not today) with Owen. Since my last update he has had a lot of ups and downs, hence my reluctance and lack of time to post. I think I'll do a bullet-point update. Otherwise this post would be long enough to be published as a novel. I'm also a little foggy on the timeline of much of what has gone on. Here goes:

Tuesday:
- Owen's was made NPO (nothing by mouth) because of his extremely distended abdomen. His belly felt as hard as that of a woman in her 7th month of pregnancy.

- Owen was taken for an abdominal x-ray to make sure the distended abdomen was merely a result of built up gas and extremely slow bowels. I was very nervous that it was something more serious, but alas the Little Man was full of gas.

- Owen's pulse-ox level crashed and went down to 75 at one point. He was also having really funky sounding breathing and seamed to be in respiratory distress. Three nurses including a PICU nurse came to listen to him, and eventually respiratory was called. They thought his lungs sounded clear, it sounded more upper-respiratory. The still ordered an epi breathing treatment PRN. Dr. Gazak was called and decided he would feel most comfortable having one of the pediatric intensivists on the floor come examine him. Dr. Pat came in and ordered a steroid to help with the post-surgery swelling in his breathing tube due to being intubated. She also ordered a chest x-ray to rule out pneumonia. He sounded really croupy and it was very worrisome. We were able to avoid the epi treatment, the steroid helped and the x-ray was negative for pneumonia. The result was watch and wait. And when I mean watch, I was obsessed with watching his pulse-ox and listening to his breathing.

Wednesday:

-Owen's pain was just not under control. He was receiving IV doses of Morphine every 3 hours. At about the 2 hour 15 minute mark he would start shaking in pain. Not good. Dr. Gazak decided that since his epidural was still in to administer numbing medicine, it would be a good idea to switch his pain control to Phentynal through his epidural. That helped A LOT.

-Owen finally slept a bit more comfortably. This is of course besides the nurses and techs constantly coming in to administer antibiotics and check his vitals. I finally started forbidding the techs from waking him to take his temperature.

Thursday:

-Owen is still NPO. I hate it. It is so awful not being able to feed him. He just looks so sad and pitiful laying in his crib.

-Owen's cough was persisting and he had spiked a fever of about 102. He was swabbed for the flu, which turned out to be negative. Of course we were informed that the test was only 56% accurate. What?!? He was put on droplet precaution just in case. Any nurse that came into the room was to suit up in a plastic gown, gloves and a face mask. Some did and some didn't. Since he was on two very strong antibiotics the doctors said he most likely had some other sort of viral infection. Again, watch and wait.

-Late in the day Owen was given the go ahead to start drinking clear liquids. He started drinking Pedialyte and luckily kept it down. After the first 2 bottles (2 oz. each) he didn't have much interest, probably because he was receiving so much fluid through his IV. They turned the drip down to see if they couldn't make him feel more hungry and thirsty.

-Owen was taken off of his strong antibiotic and switched to his normal prophylactic medicine PO, only he had to take it twice a day instead of once.

-Owen chowed down on some yogurt, one of his favorite foods. It was so good to see him eat.

Thursday:

-In the morning an anesthesiologist came to remove his epidural. I was super anxious because he had been doing so well with the pain medication through the epidural. On the other hand, they do not send babies home with needles in their backs, so it was a step in the right direction.

-Owen had a rough time with withdrawal from the Phentynal and the switch to oral pain medicine.

-Owen slept better than he had. At one point he slept through a scheduled dose of Loritab and the nurse didn't bring it for him. When he woke up he was in agony. That was when we decided he was to receive a dose every 4 hours no matter what until his pain was under control. It was important to get him over the hump.

Friday and Saturday were pretty much more of the same, with progress here and there. Owen was a bit more active, and his eating and drinking began to pick up. It was still not at a normal level, but that was to be expected. We were hopeful that we would be released on Saturday. When Dr. Gazak came to see us he was very pleased with how Owen was doing, but still not comfortable sending him home. He wanted to be cautious and make sure he was ready. He wanted another day to make sure no further complications crept up. He wanted him to be closer to his normal eating and drinking routine. Of course Wes and I want what is best for Owen and fully trust Dr. Gazak, but on the other hand we really wanted to go home. The four walls of that hospital room were really starting to close in on us. We missed Carter and we really were just crushed.

Sunday:

-Dr. Gazak came to see Owen after church, sending everyones' best for him. He also authorized discharge! We left the hospital around 12:30.

-We came home and got to see Carter. It was so great to see to see him. We all missed each other so much. Unfortunately he had come down with something, fever cough etc.

-Owen was thrilled to be home and wasted no time showing everyone how he could run around and play. He was especially happy to see his big brother. He also tired quickly and we had a hard time getting him to take it easy.

Monday:

-I took Carter to the pediatrician. He was swabbed for the flu, which was negative. The doctor thought he had what is called parainfluenza. It is basically a flu-like virus with muted symptoms and the fever isn't as high. I was glad it wasn't the flu, but not so glad that my Big Guy couldn't be given anything to make him feel better. Motrin and cough medicine became our best friends. Carter however did not want to befriend them, especially the cough medicine. That stuff does taste pretty nasty.

The rest of the week:

-Each day was a battle to get both boys to drink. Carter came around more quickly than Owen did. I can't tell you how many times I was on the phone with the Judy talking to her about how many wet diapers Owen had. That woman is a saint, though she is probably getting tired of constantly having to talk this crazy lady out of losing her mind.

Wednesday:

-Owen had his super pubic tube removed in Dr. Gazak's office. I will spare you the details of how that was done. It was gross and I had to look away at the end. Right before Dr. Gazak went to take it out he warned us that it might not come out if the dissolvable stitch that held it in his bladder had not dissolved, it would not come out and we would have to come back on Friday. Thankfully that didn't happen. I was thrilled to get that thing out. No more double diapering, and another step in the right direction. Owen wasn't so happy about it first because obviously it hurt. He was left with a hole where the tube was, just below his belly button where his vesicostomy had been. Dr. Gazak said it would close on its own since the bladder is a muscle and would atrophy to close the hole. This was another time that I found myself looking at him saying "whatever you say". Sure enough the whole that was about the size of a pen had shrunk to half the size by the next morning.

-About 2 hours after the tube removal Owen spiked a 102 degree fever. I was very concerned. Wes hypothesized that it was from having the tube removed; his body's reaction from having a foreign body removed. I was hopeful that he was right.

Thursday:

-Owen was extremely lethargic and out of sorts. After calling Judy to ask her about the probability of developing a fever after having a super pubic tube removed (very likely) and being told that getting a urine sample wouldn't be a bad idea, I took Owen to the pediatrician. She did a thorough physical exam and couldn't find anything really wrong. She took a urine sample (luckily not having to cath him) by just pushing on his belly. He actually peed on her, I was so proud! She also decided to change his antibiotic to a stronger one used to treat UTIs in case he did have one. I of course made her call Dr. Gazak and make sure he was ok with it. After all he is the go to guy for all things urinary. He agreed.

I got a call later in the day saying that his urine sample was positive for a UTI. I was crushed, worried, overwhelmed. My first thought was, "oh no what if this means the surgery didn't work." Like the crazy woman that I am, I called Judy to tell her and ask if we should be worried that the surgery didn't work. She said it is not at all uncommon to develop a UTI after the type of surgery Owen had. Also, he still has the stints in place, so as she said he still has a highway for infection. She said the switch to the new antibiotic was a good proactive step. She was going to talk to Dr. Gazak and see if there was anything else he wanted to do and call me back only if there were any changes. No call back! Also no more fevers. They sent the culture off for growth. We should know more on Monday about the type of infection and if the antibiotic that they have him on is going to work. It does seem to be doing its job (knock on wood).

Now:

-Owen is eating and drinking much better. We have been able to cut back the dosage of his pain medicine and even switch to Motrin for some of the doses. He is still recovering and having some pain, but is doing a lot better.

-Carter is feeling a lot better. No more fever, and hardly coughing at all. Now he is just a cooped up almost-four-year-old trying to drive Mama and Daddy up the wall.

-I went to Urgent Care yesterday after taking a turn for the worse. High fever, cough, congestion, extreme aches and exhaustion. You guessed it, I have the swine flu. Really? Just what I need. Oink! I am on Tamiflu. I still feel wretched. I am supposed to stay 6 feet away from the kids. It is especially worrisome if Owen would get it, he has had enough complications. Also, we are pretty sure Carter already had it when he had the flu in April. Still, I have a really cute pig flu mask. Wes has been wonderful taking care of the kids and making sure I get my rest. Thank you husband!

The Morning-After-Surgery Update

2009-10-20T09:36:00.002-04:00

I should be sleeping. As you can tell I am not, because I can't. Yesterday was one of the hardest days of my life. Top 10 for sure. I would say Top 5, but Owen has had 5 surgeries and it would be difficult to narrow it down to 5. Doesn't matter, yesterday was hard. It was hard because I had to wait knowing that my baby was in surgery, it was hard because the surgery took longer than expected (5 hours), it was hard because Owen's experience in the PACU (Patient Acute Care Unit, or Recovery) was not so good, it was hard because I have to see my Little Man hurt so badly. It was hard because I hate hospitals, I hate blood, I hate "gross" things. Owen has some gross things going on. It was hard because he is my baby and I don't want him to hurt or have gross things.

Owen came out of surgery at about 12:30. We spoke with Dr. Gazak in one of the conference rooms and he told us that it went well, but was a lot of work. As in, he had to do a lot to make Owen's urinary tract work the way it should. He made an incision between his ostomies (so like a smile across his belly under his belly button and just above his pubic bone). He took down his ureters from the ostomies and reimplanted them into his bladder. He had to reimplant them a little differently than "normal", in more of a straight line to the point of entry than the natural curve a ureter would take. There are a lot of reasons for this that I won't bore you with. He had to create valves from Owen's ureters to his bladder to prevent urine from refluxing from his bladder back up into his ureters and eventually into his kidneys. That is what got us into this mess in the first place, Owen was born without these valves. He took out the left ureter stump (the part that was left attached to the bladder when the ureters were disconnected 10 months ago) and used the (huge) right ureter stump to augment Owen's bladder. He also had to place a super pubic tube to drain Owen's urine while his bladder heals. I will spare you the details of what that means. It is one of the gross things. If you don't mind gross things feel free to ask me about it or Google it. That will stay in for about 7-10 days and will be removed in Dr. Gazak's office. He put that in through the site where Owen's vesicostomy was. Remember that was what his first surgery was, a vesicosotomy to relieve the pressure of the reflux, which didn't work as well as it needed too. He also placed stints which will be removed in 3-4 weeks during a short out-patient surgery. Did you get all that?

Recovery was awful. To put it mildly, Owen was ticked off. He was hurting, confused, disoriented etc. He was wailing. He also spiked a very high fever that was of concern to the nurses, who paged the anesthesiologist, who went into Dr. Gazak's OR and asked him what to do. He ordered a blood culture and a urine culture. We should have the results of those later today. Dr. Gazak came to talk to us (still in recovery) after his second surgery. He said he wasn't too concerned about the fever. First of all it is not uncommon in babies after such a long surgery. Second of all, he took down his ureters which were previously exposed at the skin, therefore bound to harbor some bacteria. Also, Owen is on two strong antibiotics which should fight off any infection. It was scary at first, but Dr. Gazak calmed us down. Not too long after that Owen's fever went down and we were taken up to our room on the Pediatric Unit. Dr. Gazak even came back to see us around 7 after his office hours. (I love him, you know that right?) He thought all was looking pretty good.

Last night was difficult. At about 1 am Owen started having very bad gas that was obviously making him very uncomfortable and was very painful to pass. At 4, not even a minute after receiving a dose of Loritab (pain medicine), therefore losing the medicine. As a result he was in pain and very restless for the remainder of the night. They also had to come draw blood around 4:30, which is always awful. Needless to say Wes and I did not get nearly enough sleep.

This morning Dr. Gazak's nurse Judy came to check on Owen while Dr. Gazak was in surgery. She thought his incision and super pubic tube looked good, but was not happy with his level of pain. She also said that his belly felt full and hard, probably full of gas. They gave him a dose of Morphine at about 8:30 and he has been resting comfortably since then, with the exception of when one of the anesthesiologists came to check his epidural. Hey people, I know you are trying to do your job and all but could you be a little bit more compassionate? And please stop waking my sleeping baby who is in a great deal of pain! Anyway, the epidural is working fine, it is just that it only really covers the pain of the incision not the internal pain from spasms etc. He is on an anti-spasmatic medication to minimize that.

I guess that is about all for now. Thank you all again for caring, thinking about and praying for Owen and our family.

My update from yesterday, in one post.

2009-10-20T09:16:00.001-04:00

This morning we left the house at about 4:40, heading to the hospital for Owen's surgery. Luckily Little Man was able to go back to sleep in the car. We got to the hospital, checked in on the pediatric floor and were quickly taken to our room. A tech came in to take Owen's vitals as well as his height and weight. By this point Little Man was downright ticked off. Poor thing was hungry, tired and did not want anyone bothering him.

We were taken to pre-op holding a little after 6:15The anesthesiologist came in and spoke to us, asked all of the normal questions, explained the anesthesia (which we are all too familiar with) and told us about the epidural he was going to place for pain management. It will stay in for a few days and will mainly help control incision pain. He may need other pain medication also.

Several nurses came in and asked the same questions. Better safe than sorry. At about 6:55 a nurse arrived with Little Man's happy juice (versed). I was happy to see him more relaxed. He quickly forgot about his hunger and we were able to snuggle him for about 15 minutes before they took him back to the OR.

Dr. Gazak came in, gave me a hug and was prepared to discuss the surgery and answer the questions that he knew I would have. He mostly repeated what we had discussed in his office a few months ago. There were a few surprises, well things I did not know I should say. I had hoped he would be able to go in through the existing ostomy incisions, but he is going to have to make a new incision. The other big shock, which I will not be clear about until I see it, is that he will have a port for drainage for about a week. The purpose of this is that after what Owen's urinary tract has been through, normal voiding will be foreign to his body. It along with the stents that will be placed will ensure that he completely voids. In other words, the boy will have no choice but to pee.

We received word at 7:41 that surgery had started. We have also received 3 calls from the OR since letting us know that surgery continues to go well. Wes and I are sitting, waiting, praying and trying to keep worry to a minimum by keeping our minds occupied. (Hence my blogging).

I want to thank everyone who have been so supportive of us and offered prayer and positive thoughts for Owen and our family.

2009-10-19T10:27:00.001-04:00

Ok so apparently texting a long blog post actually results in a million posts. Will have to fix that later.

2009-10-19T09:11:00.001-04:00

I am testing the text-to-blog function.

T Minus One Week

2009-10-12T20:17:00.003-04:00

Next week at this time, Owen's bladder surgery will be over. (Knocking on wood because any more postponing and I am going to lose it.) I can make it another week right? At some points during the day I really am not so sure. I am having a terribly difficult time right now. There is just so much worry, I have to work hard to occupy my mind, distract myself and think positively. There are just so many what-ifs, and if you know me you know that I am really good at getting caught up in what-ifs. You would think I would have learned by now that it really is not helpful.

Today was a particularly hard day. Owen's surgery was supposed to be today. If things had gone as planned, we would be in the hospital right now on the path to learning our new "normal". However, if things had gone as planned, we would be in the hospital right now with a little boy who just had very major surgery and whose doctor would be leaving to go out of town before said boy was even released from the hospital. This is what is best for Owen, and for that reason I will make it one more week.

Today was difficult for another reason. One year ago today Owen had his very first surgery. After a 10 day course of very strong antibiotics to knock out his near fatal infection, he had his vesicostomy. It was the scariest day of my life, exept perhaps the day he crashed and was rushed to the hospital. Either way, it makes the top 2. Looking back, as terrible as it was and as hard as this past year has been, on this day last year Owen was given a chance. He was given the chance to thrive and become the wonderful little boy that his is today. He was given the chance to have 2 healthy kidneys with minimal scarring and normal function. On this day last year Owen showed us what a fighter he is and he hasn't stopped since. He is my little tiger. I've said it before, I don't want him to have to fight and I hate watching him fight, but I am so happy that he did and continues to fight. I know he will do the same this time around, and we will be right there with him.

Pre-op Appointment

2009-10-10T20:22:00.002-04:00

On Tuesday Owen had his pre-op appointment with the anesthesiologist at the hospital. He has never had to do this before, but after the respiratory issues he had following his cleft lip repair, we thought it necessary to discuss his surgery with an anesthesiologist. This is also the longest surgery, so obviously he will be asleep for longer than he ever has been. Basically what we learned is that they don't know why he reacted the way he did following the last surgery. The only light he was able to shed on the situation was that perhaps his trachea was particularly irritated because whenever someone has facial surgery or surgery on your neck the intubation tube gets moved around a lot as the surgeon works in that area. The other possibility is that the nerve block shots that Owen was given in his face to help with post-surgical pain could have made it difficult for him to feel that he needed to swallow. The build up of saliva would make it harder to breathe. We are hoping not to have any issues with anesthesia this time around.

Owen will most likely be having an epidural placed to minimize post-surgical pain. For his past 3 urology surgeries he has had coddle blocks, but may need something more substantial for pain since this is a much more extensive surgery.

The anesthesiologist also ordered pre-op bloodwork. Fabulous, since watching blood being taken from your one year old is excruciating. At least the nurses in the lab at the hospital downtown were good. Extremely good. Unfortunately they probably have a lot of peds blood draws. I called Dr. Gazak's office later that afternoon to get the results, but the nurse wasn't in. I didn't hear anything from Judy, who is usually great about things like that so I figured all was well. Then last evening I got a call from her saying that Owen's white blood cell count was a little bit low. I freaked out. All of the reasons that I could think of that I have heard of low white blood cell count came flooding to mind and I was terrified. I asked her how low? Are they dangerously low? She said that now, they are just a little low and that Dr. Gazak thinks that it is because of the long term (a year) daily antibiotic treatment that Owen has received to prevent kidney infection. Without getting into too much detail, the particular antibiotic that he has been on has two components, one of which when used for a long period of time can lower the white count. The solution? Today Owen started a new antibiotic that does not have that component in it. That should fix the problem and all should be well. Am I convinced? No, I am extremely worried. However, I also trust Dr. Gazak and know if there was even the slightest concern that something more serious could be wrong with Owen he would have had us at the hospital performing every test in the book. He says this is the problem and gave us a solution, so I am trying as hard as I can to quell my worries.

Happy Birthday Wes!

2009-10-10T09:00:00.000-04:00

I didn't have a chance to blog yesterday, which was my wonderful husband's birthday. I wanted to wish him a belated happy birthday. He had a nice day with a presents and cards from the boys and I, a birthday lunch at work, well wishes from friends and family and then dinner out at a restaurant that we really like.

I really hope your day was special, Wes. You certainly deserve it. I love you!

Change in plans.

2009-10-08T18:36:00.003-04:00

I have been wanting to blog about this for several days. I couldn't. I don't know if I can now. I expect this to be a mostly factual post. Most people can't understand the emotion I feel about this change in plans and the reasoning.

Owen was supposed to have his bladder reconstruction/ureter reimplantation surgery on October 12. I got a call on Monday from Judy, telling me that it has been pushed back to October 19. I immediately started to sob. I was in Kohl's of all places and sat right down on the floor in the bedding section and sobbed. Luckily my mom and my friend Andie were there to peel me from the floor and take me to the car.

Reason for the change: his surgeon, everyone's favorite urologist, Dr. Gazak will be away at a conference Wednesday through Friday of next week. Last Friday he and his nurse Judy were reviewing his schedule. She said to him, "Oh, Dr. Gazak, you have Owen's reconstruction that Monday before you leave." They discussed it, they mulled it over, apparently he didn't know what to do. He called Judy Sunday night at home and said, "I can't do it. You are going to have to call them (us) and tell them I can't do it. I can't operate on Owen and then leave town. I have to close of a personal relationship with this family. I can't do Owen and then leave."

So I cried in Kohl's for several reasons:

1. As soon as "Dr. Gazak" showed up on my cell phone I knew something was up. I don't get social calls from his office.

2. It was touching to me that he cares enough that he would not just perform a major operation on my son and then leave town. It spoke volumes about his commitment to Owen, to our family. It proved to me that all of the things I thought were there in the relationship really are there. I'm not nutty, he cares about Owen. The relationship I thought we had is real. It spoke volumes about what a wonderful doctor he is, which I already knew. I didn't think it was possible, but my trust in him has increased exponentially.

3. It is impossible to prepare yourself to ever send your child into surgery. Trust me, this will be my 6th time doing it. (Once with Carter, this will be the 5th time with Owen) It NEVER gets easier. Owen's first 3 surgeries were emergent. We didn't get to pick a date in the future. We didn't wait for the next opening, it needed to be done ASAP. His lip surgery was not that way, it was the first time I got a call saying, "Mrs. B does this date work for you for your son's surgery?" Um, no. No date works for me for my son's surgery. I don't want my son to have surgery. Yeah, I get it he has to. We didn't have a choice. The surgeries saved his life. Still, I don't want him to have to go through it and I hate watching him go through it more than anything. He has to go through it again. I will be there for him, I will so what is best for him. What is best for him is for the surgery to be moved to the 19th. Still, as prepared as it is possible for me to be, I was prepared for the surgery on the 12th. I know it is just a date. I know it wouldn't have been any easier on the 12th than it will be on the 19th. It is just the change. I'm not having an easy time with the change.

4. I cry. A lot.

Owen's will now be having his bladder reconstruction/ureter reinsertion on October 19 at 7 am. It is major surgery, the most major that he has had. There is just so much, too much to convey. He will get through it, we all will. It is going to be hard, but no harder than it would have been on the 12th. Now to just get to the 19th, and get past the 19th.

One year ago today.

2009-10-04T16:00:00.003-04:00

I am one of those people who remembers dates, phone numbers, addresses and to be honest just a ton of other information. Don't get me wrong, I am not good at math. This skill never served me in a history class when asked to recall important things that happened and on what date. It is more like if it was important to me or someone that I love, I'll remember it. No photographic memory here, I'm just a weirdo.

That being said, one year ago today our lives changed forever. Owen was born seemingly healthy with a very minor cleft lip on August 27, 2008. He and I were discharged from the hospital 2 days after his birth, just like normal. We brought home a healthy baby boy, or so it seemed. As time passed he showed symptoms that mimicked those of GERD. I thought he looked jaundiced. We were given a prescription to reduce the acid in his stomach and I was told that he wasn't jaundiced, "that is just the way newborns look." It was 37 days later after his birth that we realized something was terribly wrong. Most of you know the story. For that reason and the fact that I don't have the time or emotional energy to tell the whole story. The short version is that the illness that Owen had all along (Grade 5 Bladder Reflux) gave him a terrible kidney infection. He crashed, went septic, had to be rushed first to the ER and then downtown to the PICU at Hemby Children's Hospital, and we came very close to losing him. This day last year was one of the very worst days of my life. This year I have a healtly boy with health issues and physical disabilities. This year, today I have a little boy who is happy. A boy who still has a long road ahead of him, but he is here and we are blessed. I truly do feel blessed today. I thank God for Owen, and my family in general. On the other hand I feel very emotional and have lots of anxiety to go along with the memories of this day one year ago.

Owen, thank you for fighting. Continue to fight, continue to give me signs, and know that I along with your Daddy and big brother will be always be here to fight along with you. We love you so very much!

Awareness

2009-10-02T17:34:00.003-04:00

As you may know, October is Breast Cancer Awareness Month. I am always aware of Breast Cancer and how devistating the effects can be. This is because my mom is a Breast Cancer survivor. This year is her 9th year cancer free after enduring a mastecotomy and reconstruction. She is an amazingly strong, wonderful and corageous woman who means the world to me.

These days I believe one would be hard pressed to find a person who has not been effected by this terrible disease. In 2009 alone there have so far been 192,370 new cases of Breast Cancer diagnosed in women and 1,910 new cases in men. Yes, men can get breast cancer too. My grandfather-in-law is also a survivor.

My point, and I do have one, is that this disease is prevelant and devestating. It is also detectable. Go to your yearly doctor appointments. Have yearly mammograms. Do self exams monthly. Spread the word. I think it is great that we have an entire month dedicated to awareness for this disease. I also believe that it is something to be constantly awareness and congnicent of.

Below are a few sites that are useful for information, donation, etc.

www.Komen.org
www.thebreastcancersite.com (this site offers an awesome feature. Just by clicking a button daily you can help fund mammograms for women who cannot afford them. It costs you nothing!)
http://www.nci.nih.gov/cancertopics/types/breast

Anniversary trip to Charleston

2009-10-02T09:48:00.011-04:00

Wes and I celebrated our 5 year Wedding Anniversary on September 18. The weekend after our actual anniversary we were lucky enough to get to take a trip to Charleston, SC to celebrate our anniversary with a vacation! My mom watched the boys, for which we are extremely grateful. This was the first time Wes and I have been away just the two of us since I was pregnant with Carter (4 years ago!)

We had a wonderful time. We stayed in the Historic District of Charleston. We walked, saw the sights, learned about the history of the city, ate delicious food, drank delicious wine and cocktails, and most importantly spent time together celebrating our relationship.

Guess what else? We took lots of pictures, which I have posted below.

Our beautiful hotel room.

The view from our hotel room.

The Market

Wes drinking a Guiness on the 250th anniversary of the brew.

Dinner and live music, divine!

Me enjoying some wine.

An old Charleston church.

Beautiful ironwork.

Another pretty church.

More beautiful ironwork.

Posing on the streets of Charleston.

Historic home.

Spanish moss abounds in Charleston.

Slightly North of Broad (S.N.O.B), where we had a lovely lunch.

Charleston Fire Station.

United States Custom House

A fire escape that I thought was cool.

Wes sitting on a bench in Marion Square.

Statue of Calhoun in Marion Square

Our hotel, the Francis Marion.

Replica of the first Civil War submarine.

Posing in front of the water.

The view looking out toward Ft. Sumter.

Wes' super delicious breakfast sandwich from the Farmer's Market.
Me and my super delicious crepe from the Farmer's Market.

We had such a wonderful trip and can't wait to go back!

Kids say the darndest things: Volume 1

2009-09-21T20:04:00.002-04:00

Carter, our oldest son is known fondly in our house as Boy 1. He is truly a joy. He is a little firecracker and has a bit of an attitude sometimes, but the reasons for this, the fuel behind it all is part of what makes him so special. He is loving, caring, kind, curious, and many times just plain hilarious. I wanted to take the time to share with you some of his latest revelations; some clever, some funny, and some that just plain blow me away.

Carter: Mama, what is your dad's name?
Me: (Even though he knows the answer) Jeff.
Carter: What is your mom's name?
Me: (Again he knows the answer) Sharyn
Carter: What is your grandpa's name?
Me: My grandpas were Joe and Frank.
Carter: They died, right?
Me: Yes they did.
Carter: So they are with God?
Me: Yes, they are in heaven with God.
Carter: Well, God won't sit on them.

Carter loves music. Some his favorites that crack me up right now are Technologic, "Boom Boom Pow" by the Black Eyed Peas (known to Carter as the Grey Eyed Peas), and "So What" by Pink.

Owen got a toy cell phone for his birthday. He likes to pretend to talk on it, but Carter really loves to talk on it. He can often be found conducting business, "Mama, I'm talking to a customer. I'm selling a printing press." He wants to be just like Daddy. A conversation he had the other day:

Carter: Ok, yes, I will see you later.
Me: Who were you talking to?
Carter: My daughter.
Me: Your daughter, what is her name?
Carter: Daughter.
Me: Oh, who is her Mama?
Carter: I don't know, just it is not you.

Wes: Carter, what do you want for breakfast (names options, all met with a no.)
Wes: What about a cereal bar?
Carter: No cereal bar.
Wes: But you love cereal bars, especially the granola ones with the chocolate chips.
Carter: Miss Naomi (his preschool teacher that moved away about a month and a half ago) says I should not have chocolate for breakfast so I don't want cereal bars anymore.

Carter calls receiving communion at church "getting Jesus bread". It is awesome seeing him get more and more into church.

I am sure I am forgetting a ton of what we call "Carter stories" that bring endless smiles to our faces. I will be back with more as the occur.

Five years already?

2009-09-18T12:29:00.002-04:00

It was five years ago today that I married my very best friend. It turns out he is also the very best husband and the very best Daddy. We are always talking to Carter about choices, mostly about making good ones, i.e. following the rules. Today I feel an overwhelming feeling of certainty that I made the right choice when I pledged my love and my life to this man 5 years ago. (No, in this case my good choice does not have to do with following any rules.) What I'm trying to say is that I am definitely blessed to have this man as my husband, my partner, the father of my children, my best friend and so much more. I love him in so many ways, it truly feels as though there could not possibly be enough words to list them. I think the thing I feel most thankful for today as we celebrate 5 years of marriage is how well we compliment each other. We are a team. There is just not another person in the world that I'd rather have on my team.

Happy Anniversary Wes! I want you to know that I love you and appreciate you today and every day. Also, that I plan to continue to do so for many many years to come.

My New Do

2009-09-17T16:23:00.004-04:00

I have been in something of a funk lately. This particular funk is multifaceted. Nearly all of the situations inducing said funk are out of my control. (What else is new?)

So what is a Dara to do? Chop off all of her hair. For those of you that don't know this about me I have what Ashley and I call hair bipolar disorder. She has it too. What happens is we grow our hair long, then when the time feels right (or for me when I am in a funk) we cut it short. Ashley takes this process a step further by changing her hair color every now and again. I don't do hair color, I am too low maintenence. Love you sister! :)

Today I took control of my funk and got my hair cut. I love the cut, and I feel just a little bit lighter.

Print '09, I despise you!

2009-09-15T19:33:00.003-04:00

Every year our company (I don't work there now but it is our family business and I will be going back) has booths at two industry trade shows. The bigger of the two is Graph Expo, held in Chicago every year sometime in September. Every 4 years Graph Expo is Print X, whatever year it is. This year is one of those years, Print '09. This basically means Graph Expo on steroids. Graph Expo is usually 3 or 4 days, I can't remember which. This year the show is 6 days. Six. Wes, being the Vice President of the company is obviously an integral part of the show. Thus, Wes has been out of town since last Thursday and will not be home until very late tomorrow night. It has been quite some time since Wes has had to travel overnight. I don't think he has ever been away for this long since we've had the boys. Certainly not since Little Man made his appearance.

We all miss him very much. Carter is having a particularly difficult time. He was ok for the first few days. Now every once in a while he starts this truly sad and pathetic whine and cries, "I want Daddy." Poor guy, he is going to be so excited to see his Daddy on Thursday morning.

I have been lucky to have my mom and Ashley to help me out some, so I haven't been totally solo. Still, I can't wait to have my husband home. I feel blessed that he is so wonderful and so missable. The fact that his presence and help is so missed is really a testament to what a great husband and father he is. We miss you Daddy!

Little Man's visit to the ER

2009-09-14T20:47:00.004-04:00

Disclaimer: A small part of this post explaining the reason Owen had to the ER may be a bit graphic for some people. I will try to keep it to a minimum, and only explain what is necessary.

Reminder: Owen has a bilateral ureterostomy. His ureters are disconnected from his bladder (since December 4, 2009) so his bladder is just hanging out in his body, never filling with urine. His urine drains through these holes in his abdomen. Nothing should ever be in his bladder. If something comes out of his bladder that is a big concern.

Reminder 2: Wes is in Chicago on a business trip. He left early Thursday morning and will not be back until late Wednesday night.

I meant to get this post up yesterday, but life got in the way. I just haven't had time.

Owen had his VCUG on August 25, where dye was injected into his bladder. As you may remember from that post he was cathed three times before it was successful. He spiked a fever on August 31 and I took him to the doctor. There he was cathed again to make sure nothing was in his bladder, ruling out a bladder infection, which is a risk for him after the VCUG. Nothing came out and the pediatrician decided that he either had something viral or the fever was being caused by a blood blister that developed as one of his incisors was trying to break through. September 4 he had his one year well visit. All was A-OK. A few days later he became feverish again and very fussy. This continued to escalate to the point where I really wondered if it was just teething related. I kept telling myself that the doctor found no infection, he is fine.

Fast forward to Saturday. In the 24 hour period from Friday night to afternoon nap time on Saturday Little Man slept only 7.5 hours. This is not enough sleep, and not like him. He was fussy, clingy, and inconsolable at times. I had begun to worry. He woke up from his afternoon nap after only 45 minutes (way shorter than normal, especially considering his poor nighttime sleep and lack of morning nap). Even worse, instead of chatting or fussing to let me know he was awake, he was screaming as though in excruciating pain. I tried to comfort him and went to change his diaper.

Here comes the slightly graphic bit...

In his diaper near where his penis is there was a brownish sort of rust colored spot that looked exactly like dried blood. I freaked. As far as I could deduce, blood had discharged from his penis. This is a big deal, a big no no. Something to be worried about.

I called the urologist's office and waited the agonizing 20 minutes that it took him to call me back. After some discussion he thought that it was unlikely that there was a bladder infection resulting from the VCUG because of how long it had been. He thought the repeated catherizations could have caused irritation resulting in the bloody discharge. After discussing the fact that I had taken him to the pediatrician twice and he had undergone a general checkup resulting in nothing but normal findings, and hearing that the symptoms (fever mostly) had been persistent for so long, he recommended that I take Owen to the ER.

My mom came over to watch Carter and Ashley went with us to the ER. We waited for an hour just to be seen in triage and a total of 2.5 hours to go back to our room.

Long story short: He was examined. He was held down while the nurses looked for a vein and took blood. We both cried. They were going to place an IV since they had to stick him anyway but it infiltrated, just like I told them often happens. The nurse said "You were right mom." Do you know why I was right? Because I have seen it too many times, Owen has been through it too many times. Going through things like this never gets easier for either of us.

Diagnosis: Owen's left ear was "a little red, but probably not enough to cause the fever and elevated white blood cell count" The ER doctor talked to Dr. Gazak, who told him not to collect a urine sample (the only way to do that is to cath his ostomies, which would not provide a valid sample since they are open to the skin and the skin always caries bacteria) and to put him on a vigorous course of a stronger antibiotic than the one that he as a proflyactic.

Translation: Owen might have a slight ear infection and probably has a UTI. We have made it almost 11 months without Owen getting a UTI or a more serious kidney infection, which is a major concern with bladder reflux kids. Especially those with reflux as severe as Owen's and those children with ostomies. Now here we are less than a month away from Owen's reimplantation surgery and he gets an infection.

What now?: They send more specific blood cultures off to check for a more serious (kidney) infection. We hope they don't find one. I watch him. I make sure his fever doesn't spike and that he doesn't act out of sorts. Mostly, I worry and hope I will be able to tell if something more serious is wrong. Also, we pray.

One Year Old Stats

2009-09-10T10:03:00.002-04:00

In all of life's recent craziness, I forgot to post about Little Man's one year well visit. He weighs in at 20.4 lbs. and is 31 1/4 inches long (the right side, which is his unaffected leg). I have to look up what Carter's weight was at 1 year, but I know it was less than 20 lbs. Funny that this boy that was so sick turns out to be my little chunker! The doctor was very happy with his growth and development. We also had the chance to update him on all the recent news from the different specialists. Owen is on a delayed vaccination schedule so he did not receive any shots at this visit. Actually, before the one year visit he was all caught up since there were no shots at 9 months (when he received his 6 month shots), but we have decided to keep him on the delayed schedule. We decided to put off the 1 year immunizations particularly because of the close proximity to his bladder surgeries.

Speaking of bladder surgery, the big day is going to be October 12. We were hoping for the end of September, but that is the first available date so we are going with it. We still feel blessed to be moving forward. Call it irony, coincidence, whatever you want, but this reimplantation surgery will be taking place once year to the day after Owen's original surgery was performed!

The pediatrician was also surprised and thrilled that Owen is walking, and doing it so well. He agreed with the orthopedist that his leg strength is equal on both sides. This is something to be truly thankful for.

I fought my laptop and the laptop won!

2009-09-05T16:59:00.002-04:00

On Wednesday I was rushing to get out of the house and had an accident. I wasn't late or really in any hurry to be anywhere, I just tend to move quickly and am admittedly a bit of a klutz. So my laptop was sitting on top of a fairly high end table (about 3 feet high I'd say) and was plugged in to a nearby outlet. I tripped over the cord and the computer came crashing down on my foot. It hit my right foot diagonally, battery side down, across the big toe side of my foot. I screamed, loud. Owen really was a little trooper. He just sat there nicely looking at me like perhaps I had lost my mind as I crawled to the couch and cried and cried. My mom was out, but luckily when I called her to come rescue me she was only about 5 minutes away. My big toe and the part of my foot right under it was already purple and very very swollen. I applied ice for about half an hour, saw no improvement and decided that and x-ray was going to be necessary. My sister came to get me since I couldn't drive and my mom kept Owen. To make a long story short, I went to the doctor (luckily they do x-rays right in the office), and found out that my big toe was broken. It is a pretty bad break right across where my toenail is. She said that I wouldn't need a cast because you really can't cast a toe, especially when the break is that far up, but I would need to stay off of it. I started laughing and so did she. Her daughter goes to school with Carter so she knows that I have two small children whose care necessitates that I be ON my feet much of the time. Nope she said, I was getting crutches and would need to enlist help. My mom and Ashley both pitched in where there schedules allowed on Thursday, but they both already had plans to be out of town this weekend. Wes ended up having to take Friday off work because I couldn't carry Owen. Probably not his idea of a riveting vacation day, but I really appreciate his support.

I'm still on the crutches. My toe hurts extremely bad and the rest of my foot, although it is not broken does not feel very swell either. Uh, no pun intended, it is actually very swollen. I'm looking forward to the pain subsiding and being able to put weight on my foot. Crutches really are not fun at all. At least my upper body is getting a workout!

News from the Orthopedist

2009-09-04T18:35:00.002-04:00

Owen had an appointment with his orthopedic surgeon on Tuesday. This was the first official appointment to discuss and deal with his leg length discrepancy. Of course we have known about the LLD since he was 5 days old and learned more when he was about 2 months old. We thought we were dealing with a congenital short femur and knew that he would require a leg lengthening surgery. Because the surgery needs to be coordinated around his growth pattern and growth spurts it will likely be when he is between 8 and 10 years old.

This was the appointment at which we were to begin measuring the length of the femur. He had a baseline x-ray, which unfortunately showed not only that the left femur is 2 cm shorter than the right, but that his left tibia is also short. I was devastated. I did not expect to go there and receive news that yet another thing was wrong with my Little Man. Dr. Casey, his orthopedist was not all that surprised and I guess I really shouldn't be either. The discrepancy has always been obvious in the femur and not so obvious in the tibia (it is 1 cm short) but we were never told that his tibia was unaffected. At this point he is much to young to consider lengthening, but this makes figuring out how to go about it even more difficult. There are what seem to be 100 different options. To name a few, she may have to lengthen the femur and the tibia, just the femur, lengthen both twice, lengthen both once and then shorten the "long" leg a bit. There are complex growth formulas which she will use in conjunction with measurement on x-rays to decide what to do. The bottom line is that it is going to be a long time before we know anything, and it is weighing heavily on my mind.

The good news: she was thrilled that he is walking and that he did so as early as he did. She said the strength is equal in both legs, he has done a wonderful job compensating for the discrepancy and she believes he will continue to do so. That brings me to the next issue: heel lifts. Since the surgery can't be done until he is much older, it will be necessary for Owen to have a heel lift on his left shoe. We were expecting that to begin now since he is a full-blown walker, but for many perfectly reasonable and understandable medical reasons that I will not bore you with, she wants to wait. I didn't want to wait and thought about arguing with her about it, but she was able to validate her reasoning and convince me that it is better to wait. We go again in 6 months for more x-rays and measurements. At that time we will revisit the possibility of beginning the lifts. At the very latest we will start with them when he is 2.

More good news: His hips are both still in perfect position and are looking great. Also, the bone quality and composition in the left leg looks just the same as in the right. That means it is just the length discrepancy and not something worse or more complicated that we are dealing with.

This is the main reason I have been hesitating to post. I didn't know how to talk about this latest development. I didn't know how much to share or what to say. What it has come down to is that this is my outlet, writing is my therapy and I have always been very honest about my emotions and feelings. Ok, so we got some unexpected and bad news, but we also learned that it is not the end of the world, it is still fixable, and there is plenty of good news to be thankful for. Don't get me wrong, I am thankful, eternally thankful and grateful. I am also angry, confused, sad and just upset and frustrated. I hate having to watch my baby go through this, I hate that he has to deal with this. I want what is best for him. I don't want to have to wait, I don't want him to have a disability to deal with for years to come, I don't want to watch him struggle. I don't want to go back every 6 months for more x-rays and to be told that the discrepancy is now larger, to continue to be fitted for new heel lifts each time he outgrows a pair of shoes. I guess what I am trying to say is that I am having a hard time with all of this. I am blessed to have Owen, I wouldn't give him up for anything in the whole wide world. It is just hard to watch your baby go through hardship, it is hard when there are things that you cannot fix no matter how good of a mom you are. It is a terribly helpless feeling.

Little Man's Birthday Party

2009-09-04T15:58:00.006-04:00

We had a small birthday party for Owen last Saturday with family and a few friends. Thanks to all that were here, and we really missed those that couldn't make it. Of course he didn't really know much about what was going on, just that there were a lot of people in the house and the poor guy's teeth hurt so bad. He was a bit of a cranky guest of honor, but we still had a very nice time.

Some pictures:Mama, Owen and Carter before the guests arrived. Aunt A holding the birthday boy.

The birthday cupcake cake. I wanted something with a tiger on it, but Tigger was as close as I could get.
Mama and Daddy singing Happy Birthday.Blowing out the candle.Carter and his friends Christian and Carter.Owen waiting for the cupcake that he really wanted nothing to do with. He had a bit of a been there, done that attitude. Pappy helping Owen open gifts. I don't know why we bother buying the children toys when they really prefer playing with boxes.
Now the box and some paper! Owen playing with his new cell phone.

Owen's Birthday Pictures

2009-09-04T15:32:00.009-04:00

I am so behind and have not blogged for a little bit. Since I am totally Type A and don't like to combine too many topics into one post, I should have a few coming up in the next day or two. First, please enjoy some photos of the Little Man's first birthday.

Wes and Owen opening gifts.Carter getting in on the action.

Mama and the Birthday boy!

Owen's birthday cupcake.

Digging in and getting his hands dirty!Clapping with DaddyCarter eating his cupcake.

Sunday in the park

2009-08-28T16:02:00.006-04:00

Carter has a super cool swingset in our backyard and loves to play on it. However, we also have so many nice parks in our area that are vastly underutilized by our family. I got home from my whirlwind trip to PA on Saturday evening and I had missed my family like nobody's business. We decided a fun family outing was in order for Sunday. Wes and I mulled over just what outing would be fun for the family and realized that places open much later on Sundays and all of our ideas would end up interfering with the boys' afternoon naps. We decided to go to Stumpy Creek Park. Carter was thrilled. Wes had taken the boys there once before and Carter couldn't stop talking about how much he loved the playground. It was so nice to be together as a family, having fun and enjoying the outdoors.

I even have some pictures to share. (Are you surprised?)Carter climbing the "spider web"

Daddy and Owen on the teeter-totter.

Carter taking my lunch order.

Daddy pushing O on the swing.

Uh, lean back!

O looking into the distance. Actually I think he was looking at Carter playing.

Smiley O'Reilly

Carter is perfectly capable of pumping his legs on the swing, but would rather be pushed. We are working on that.

Happy First Birthday Owen!

2009-08-27T19:39:00.003-04:00

Last year on this day at 8:47 pm my life changed. It was a wonderful change, one that can be brought about only by the birth of a child. One year ago today my second son Owen was born. I am blessed to have him. As I celebrate him today and thank God for giving him to me, I am also a little bit sad as I think of our angel baby. Owen's twin did not make it to celebrate this day with us and that is hard.

Owen,

There really are no words (or maybe there are just a while lot of them) to begin to describe my love for you. Your arrival truly completed our family, and certainly completed me. For the past year, through all of the ups and downs, you have added happiness, smiles and endless love to every single day. I have loved watching you grow. Every milestone you reach has given me endless joy. Seeing you smile, roll over, sit up, babble, and walk has been priceless. I have been through this type of joy before with you big brother, and I can say for certain that it is just as wonderful the second time around and love truly does multiply. Speaking of that big brother of yours, one of my favorite things to watch lately is your interaction with him. Seeing the love that you and Carter have for each other, watching you cuddle or play or chase each other is extremely heartwarming and rewarding.

You are a fighter. You are my tiger, my strong Little Man. You have been through more this year than any baby should have to endure. One of the things that I love most about you is that through it all you have been so happy. Always having a smile on your face and bringing smiles to those around you. I don't want you to hurt and I wish you didn't have to fight, but I'm so thankful that you did. I also know that you will continue to fight and that the future holds great things for you. I can't wait to see what those things are. Most of all I want you to know that I promise to always be right there beside you, fighting along with you. You are lucky to have a wonderful Daddy and a great big brother who will be there for you also.

I love you Owen, thank you for being the one and only you. I hope that your second year is even happier than your first.

VCUG- Moving Forward

2009-08-26T20:22:00.004-04:00

Today Owen had his fourth VCUG (voiding study). The first was last October when Owen got sick, when this whole nightmare began. It was the study that diagnosed his Grade 5 Vesicoureteral Reflux. The next two were diagnostic of issues with his ureterostomies. The one performed today was for the purpose of checking out his bladder. I apologize if I am repeating myself, I don't even know what I have said and not said. Essentially Dr. Gazak needed to see what condition the Little Man's Little Bladder is in after just sitting disconnected in his body since early December. The bladder is a muscle, therefore prone to atrophy when not used. Owen's bladder has not been used in the voiding process to store and release urine. Atrophy is to be expected.

The actual study did not go well. Actually that is a vast understatement. It isn't a pleasant thing to have done under the best circumstances. In order to fill the bladder with dye it is necessary to place a catheter. Painful. To start things off, the radiology nurse didn't even know what a bilateral ureterostomy was. I explained it to her, and I did it well if I do say so myself. I have never professed to be a medical professional, but I have been through the ringer as the mom of a baby with a very serious urological condition. To her I guess I was just a mom bringing her kid in for a procedure. That is to say, she didn't believe a word I said. It didn't take me long to realize that she had no clue what I was talking about so I quickly resorted to my "he voids urine through holes in his belly" explanation. I'll cut this short so as not to get too graphic, but he had to be cathed three times. As a mother, it is a miracle that I did not physically harm the nurse that was performing these many failed catherizations. I finally became the voice of reason- "the cath is too big that is why the dye is leaking out. Do you have a feeding tube that could be hooked to the IV drip? It would be smaller to insert." What a novel idea! That is what they did and what finally allowed them to get the images they needed. Poor Owen cried, screamed and wailed. I stood there singing to him, talking to him, reassuring him and wanting to scream and wail myself. Nothing I did could soothe him and we both just wanted it to be over. Poor Wes was sitting right outside the door listening to him wail because only one parent is allowed in the room. I don't know which is worse.

After the VCUG we headed straight to the urologist's office. Dr. Gazak hadn't arrived yet, having gotten stuck in surgery. This is not uncommon, and is also totally understandable. I know if it was my child on the table he would do what he needed to do so I don't mind waiting when it is someone else's child. I also knew that I was not leaving that office without seeing him and getting some answers. The wait was really very short and Owen amused himself walking around the waiting room trying to play with a few bigger kids that were there waiting also. All of the nurses in the office were thrilled to see him, couldn't believe how big he had gotten and were shocked to see him walking. We were called back to see the doctor and he reviewed the films with us. Owen's bladder is smaller than it should be at this point, but slightly. It held roughly 40 cc of fluid before voiding. The stumps of his ureters (the parts left connected to his bladder during his ureterostomy and sutered closed) were very large, particularly on the right side. Without getting into too much medical jargon, this is because they were the parts left connected. The ureters which were disconnected were allowed to "rest", given a chance to have the pressure that was being put upon them by the reflux alleviated. As a result they shrunk. They are ready to be reconnected to his bladder along with valves to be created by the doctor. The doctor left those stumps in there on purpose. He left them in case he needed extra "material" to enlarge Owen's bladder if need be. As it is his bladder is a bit smaller than it typically would be. If he had the reimplantation surgery without any alteration to his bladder, normal use would reverse the atrophy and allow the muscle to grow. However, since that extra ureter is there and just waiting to be put to use, Dr. Gazak is going to use that ureter material to augment Owen's bladder.

If you got through all that, thank you. I am having trouble completely wrapping my own brain around it and I have been living it for 10 months. The bottom line is that while Owen is doing wonderfully, it is time for him to take the next step in his health journey. In this case that means another surgery. I am scared. I hate that he has to have another surgery. I hate that it is so major. On the other hand I love my son. I look him in the eyes every day and he shows me that he is a fighter. All I have to do is be there to fight next to him along with Wes and the rest of our support system. The surgery will likely take place toward the end of Septmeber. I am waiting for a call from Dr. Gazak's scheduler. It will last about 3 hours and Owen will spend about 3 days in the hospital. Semi-permanent stents will be placed and then be removed a few weeks later during an outpatient cystoscope under general anethesia. Like I said, it is a lot to digest and I am scared, but we know that this is a HUGE step in the right direction for Owen.

Lip Progress

2009-08-26T09:17:00.004-04:00

Yesterday we had another follow-up appointment with the Little Man's plastic surgeon. His lip looks good. (See below)

This is great news. I already knew it and you probably did too if you have looked at the many photos I have posted in the past few months, but it is good nonetheless. As I think I've made pretty clear, I do not like this particular doctor. I have great respect for his surgical ability and the good that he does for children in need. There are 4 million children in the world waiting for some type of cleft surgery. Because of this man and the fact that we are fortunate to have good health insurance, Owen is not one of those children. That being said, he is still and odd man prone to making offensive comments or just plain not listening. Yes Owen is the patient, but Owen is (almost) one and I am his mother, his advocate. I guess what I am saying is that I am still glad to have this man as part of Owen's medical team, but am unlikely to invite him to a dinner party. We follow-up again in 3-4 months.

This afternoon is Owen's VCUG, a voiding study that will give us more information about the condition of his bladder, relevant to what will take place during his surgery next month.

Home

2009-08-24T20:12:00.002-04:00

You are going to have to cut me some slack as I try to get this post out of my head, where it has resided for several days now, and into words. This past week has been particularly challenging for our family. How is this different than the challenges that we have faced with Owen's health in the last year, you may ask? A week ago today our family learned a lesson about loss that no one should have to learn. Of course Wes and I as well as my parents and sister have experienced loss before, just not like this.

I am very sensitive to this in my own life and the lives of those close to me: each person experiences grief differently, just as each loss is a different experience. I was going to dedicate an entire post to what happened, but frankly I can't. I also don't want to get into too much detail because I don't think it is appropriate or necessary. Please do not interpret this as a lack of empathy or grief on my part. It is just a private issue, about which my personal feelings are all that I feel comfortable sharing.
Many of you know that my dad owns a business. Wes and Ashley work there. My mom also works there on a part-time, as needed basis. I worked there during summers in college and for the past five years, taking leave only recently to attend to the Little Man's issues. A woman that works for the company and has worked with my dad for about 12 years had a major tragedy in her life last week. Her husband committed suicide. He had a hard life, and suffered greatly in the recent past. They had only been married a year and a half. The loss of his life and their love has obviously been devestating to her, and is something I have been trying very hard not to even allow myself to imagine.

What does this have to do with home? I'm getting there. After we found out what had happened, after we cried, it became necessary to think about logistics of the business. This woman runs our PA office and will obviously be out of work for a bit. Much discussion led to the decision that my mom and I should head North and gather vital information needed to keep things running smoothly. This was only the second time since moving to NC about 14 months ago that I have made the trip. The first time was for Ashley's bridal shower and that was a whirl wind weekend during which I really had no time to stop and think, let alone reflect. Mom and I drove on Thursday, a 9 hour drive. We arrived and I dropped my mom off at a family friend's house where she would be staying. I then went to visit my friends, a couple who were my chiropractors when we lived there. After that visit I got in the car to head to my in-laws house where I would be staying. I was in the next town over, probably about a 7 mile drive from their house. As I drove out of the parking lot I could not for the life of me remember how to get there. I lost it. How could this possibly happen? I have known Wes for 12 years, almost the whole time I lived in PA. When we lived there I could navigate the area with my eyes shut. I essentially grew up there, it is where I learned to drive. Different routes from where I was to the in-laws house started to pop into my head. Unfortunately none seemed like the quickest or most direct route. Finally I just chose one. As I drove I saw places that had changed ownership, new businesses that had cropped up.

Reminder: I was already in a very emotional state. The route I had decided to take had me passing my parents old neighborhood, the house I lived in all through middle school and high school. I hadn't thought about it at the time, but I had inadvertantly chosen a route that included a 5 mile stretch that I have driven hundreds of time. I ended up driving from my old house to Wes' parents house. After I passed the old 'hood it didn't take me long to realize the situation I had put myself in. So much has changed. Not just the new businesses or all of the houses for sale on River Rd. following all of the flooding in the past 5 years, but my feelings about this place that I used to call home. I left there 7 months pregnant with Owen and very emotional after residing there for 12 years. Leaving was hectic, last minute things kept creeping up, and I really didn't get to say a proper goodbye to my "home".

I love where we live now. I wouldn't change it for the world, and I knew that before I made my trip "up North". Still, I expected to feel differently once I was back in the area. I didn't expect to feel any desire to move back but I did expect to feel a little sad or perhaps nostalgic at the least. Instead I felt hatred and anger. I hated being there. Of course the reason I was there and some of the ridiculous things that happened work-wise were not helpful, but I felt no desire to return ever again. This place was certainly not my home.

As I drove I cried and cried, almost having to pull over at one point. I missed my husband and my kids. That is when I hit me: Home is where the people that you love are. I suppose on some level I have always known this. In part the issue is that when I lived in PA so did Wes, my parents and my sister. The only tie we have to the area now is Wes' parents and even that won't be for long, as they have bought a house here in NC about 3 miles away. I was so glad to be staying with them. After 5 miles of driving this route that was as well-known to me as the back of my hand, I found myself at the house that Wes grew up in. The only problem was he was not there. Luckily for me his parents were. They were there to welcome me with open arms. They were there to listen and support me. Maybe I was not Home, but I was about as close to it as I could get.

Sunday Swim

2009-08-16T20:23:00.012-04:00

Our neighbors and good friends went on vacation this weekend. They took their two sons who are avid baseball fans to see the Phillies play the Atlanta Braves. While they were gone they were nice enough to offer us the use of their beautiful pool. Yesterday was a super busy day with the birthday bash for my mom, Justin and our friend Matt (more on that later) so we decided to take the boys for a swim this morning. We waited until after Owen's morning nap but before lunch. It was the perfect time for a swim because the sun wasn't too hot yet, and it is also the most likely time to catch both boys on their best behavior. They didn't do too bad, and all in all we had a great time! Of course I have photos to share!The boys in the pool.

Little Man standing on the steps.

Thinking about sitting down.

Sitting down enjoying the water!

Daddy and Owen beside the waterfall.

Daddy and his boys.

Mama and Carter in the pool.

Mama and Carter in the hot tub (not hot though)!

Helping Carter "swim".

Mama and Owen poolside.

We really had a nice time swimming and spending time as a family. Thanks guys for letting us use the pool!!

Never Again...

2009-08-16T09:03:00.003-04:00

Never again will I set foot inside the walls of Lake Norman Regional Hospital. I had to go there Friday for a CT scan of my jaw to rule out any bone infection, abscess or errant piece of root tip. This after having my wisdom teeth removed a month ago, followed by complications, another surgery, more complications, and a lot of pain. When I found out I had to go to Lake Norman for the CT scan (it was the only place the surgeon's office could get me in the next day) I knew I was going to need someone to come with me. I hadn't been back there since we rushed Owen there 10 months ago in shock (him not me), so sick, and unresponsive. Since that day when the doctors and nurses looked at Owen and said he was fine, looked at me and said I was a hysterical mother. Luckily we waited for our pediatrician and Owen received the proper care before being transferred to at *real* hospital. I made a decision that day that neither of my boys would be taken there for care ever again. Anyway, I figured there wasn't much they could do to mess up a CT scan, I just wasn't sure how I was going to be able to physically make myself walk into that building after everything that happened. The answer? Anxiety medicine and help from my sister.

I checked in at the front desk, situated in front of a waiting room that smelled awful and was accurately described by Ashley as a Labyrinth. Finally a volunteer came over and told me that the woman at window 2 would help me. We made our way over there, where a hospital employee was waiting to check me in for my procedure. Ok, I'd rather call it a test, but I wasn't going to get into semantics with this woman. All I knew was that if I needed to be treated in any way Ashley had strict orders to make sure I was taken to a different hospital. To make a very long story short, the woman could not find the orders from my doctor for the scan and the doctor's office was closed. I called him on his cell phone, which he didn't answer. I was so angry and so anxious, knowing that I could not possibly leave this place and then make myself come back on Monday or whenever they got the orders for my scan. It was now or never. As she had people looking for my scans she took my information.

Lady: Have you ever been here before?
Me: No.
Lady: Has anyone with the same address as you been here before?
Me: (Trying not to cry) Yes my son.
Lady: What is his name?
*At this point I'm sure this is all up on her screen since she has my license and insurance card, and frankly I don't want to talk about Owen.
Me: Owen
Lady: Are you the primary on this insurance?
Me: No my husband is, Wesley B.
Lady: What is his cell phone number?
Me: Why do you need that?
Lady: For and emergency contact.
*I pointed to Ashley, sitting next to me and said "She's here."
Lady: Well, in case you are ever brought here again.
Me: I won't be.
Lady: Well, like if you were in an accident you wouldn't have them bring you here?
Me and Ashley in stereo: No.
*Her phone started ringing just then so luckily we got to skip further questioning on the subject because I definitely would have told her exactly what I thought about the hospital and the treatment Little Man received there, but I'm glad I didn't have to.
Ashley: So you're telling me that she can't have the CT scan and we are supposed to just sit here and twiddle our thumbs until someone can get a hold of the doctor?
Me: I have had 2 oral surgeries in the last month and am in a great deal of pain, I need to have this CT scan done to rule certain things out.
Lady: Well, you could always go over to the ER...
Me and Ashley in stereo: Laughter...

Finally the lady "found" my orders. In other words they were sitting back there the whole time and some moron forgot where they put them. We were given directions to the imaging department, complete with an explanation that L,L,R means left, left, right. Thanks.

I checked in at imaging and signed some papers, making sure it was clear that I was only consenting to the CT scan and no other treatment. There was a sign there saying that "If you are pregnant or think you might be pregnant please inform the technologist." Ashley and I weren't sure that technologist was actually a word. I've always been under the impression that the proper term is radiology technician. A little research on our phones while waiting and we found out that yes technologist is a word, just not the proper one in this context.

This is also when I found out that it was to be done with IV contrast. Awesome, I hate that stuff. We waited in that waiting room for an hour and a half. I finally went back for my scan and the "technologist" started my IV. I told him that last time I had this done I got sick afterward. Not an allergic reaction, I just got flushed, sick to my stomach and vomited. He told me he was going to slow the drip of the IV to help prevent that. Yeah, didn't work. Again, shortly after feeling the awful warm feeling spread throughout my insides, I started feeling sick. It was all I could do to be still for the rest of the test. As soon as they were done I was searching for a trash can. The guy's boss, the head of imaging, came in with wet wash cloths and was trying to help me. She told me to lay down for a few minutes because I was looking very white. The guy left the room and when he walked back in said, "I wish I could lay down." I said, "Yeah, I wish I could inject you with dye." He wasn't amused, but his boss definitely was.

Now I just wait until probably Monday when the doctor calls to tell me what the scan showed about my jaw.

Like I said, never again will I allow myself to even be scanned at Lake Norman Regional Hospital.

Happy Birthday Mom!

2009-08-14T08:11:00.002-04:00

Today I want to wish a very happy birthday to a very special woman, my mom. She is the greatest mom and Grandma, but also one of my best friends. I truly don't know what I would do without her and am truly blessed to have her as such an integral part of my life. Knowing that I can always count on her means the world to me. Most importantly, watching her with my boys and seeing how much she loves them just warms my heart. We are all very lucky to have her. I love you mom!

Tax Free

2009-08-09T07:29:00.003-04:00

We have lived in North Carolina for about 14 months now. I love living here, much more than I ever thought that I would. The area is beautiful, I love living on a lake. I love our neighborhood- it is quite but we have made some great friends here. The weather is much better than "up North" as the Southerners say, but I do find myself occasionally complaining about the heat. Surprisingly, there are few things I find myself missing about Pennsylvania, despite having lived there for 12 years. That being said, this weekend made me feel nostalgia for PA. This weekend is tax-free weekend in NC. They do it twice a year, but this is the big one, right before back-to-school. This weekend there is no tax on clothes, shoes, and other back to school items. Of course in PA there was never tax on clothes, so that was a big adjustment when we moved here. Of course I had to take advantage of this tax vacation. Friday morning I loaded Owen into the car and we went to Target and the mall and got ourselves some tax-free clothes! A lot of stores have sales to coincide with this event, which is even better. I scored Wes a pair of jeans he needed, a few things for myself, and most importantly clothes for the boys in the next size. Owen didn't have quite as much fun as I did, but at least he was cooperative!

Random Fever

2009-08-06T20:40:00.003-04:00

It feels like this summer has been one illness after another at our house. Probably the worst of which the complications after my wisdom tooth extraction and the surgery that resulted, but luckily nothing too serious.

I got a call today from Carter's school that he was complaining of not feeling well and had 102 degree fever. His seat was in Wes' car so I called him to let him know he needed to pick him up. Wes took him straight to Urgent Care where he was given a (mostly) clean bill of health. His temperature was just over 100 under his armpit when they took it, so really just over 101. Other than that, no symptoms. They did an exam and swabbed him for strep and everything was fine. The doctor said to keep him hydrated and watch him, but it is probably nothing.

He came home and wanted to lay on the couch and watch a show, but within no time was adamant about "helping" me do laundry. By bedtime we had a little boy running around acting like his normal self telling us that no, it was not time for bed.

Of course as I post this I am knocking on wood.

Quick Birthday Shout-out

2009-08-06T16:53:00.002-04:00

Yesterday was my new brother-in-law Justin's birthday. He spent it with his new lovely wife watching the sun rise over Haleakala. Not too shabby!

Today is my father-in-law's 60th birthday. We wish we were with him to celebrate but had a cake and sang last week when they were visiting.

Happy Birthday guys!!

I miss my sister!

2009-08-06T12:26:00.008-04:00

As many of you know, my sister got married on July 25. A few days later she and my wonderful new brother-in-law jetted off to Maui for their honeymoon. I am happy for them. I hope they have enjoyed their trip immensely. I am thrilled that they were able to enjoy the beginning of their married life in such a magical and beautiful place. Really, I am very happy for them. I'm even past being jealous that they got to go to Hawaii and I didn't, but now I want them to come home. I miss my sister! She is coming home tomorrow and I am very excited to see her. While I wait (well I won't actually just sit here and wait, I miss her
but I do have other things to do) I thought I would share some photos from her wedding. Also below I am going to copy the speech I delivered as Matron of Honor because a lot of people have asked me about it. The inspiration for my speech came from the song My Wish by Rascal Flatts. Due to some drama that we will not get into here I couldn't use the song, but did integrate some of the lyrics that were most important to me into the speech. Enjoy!

The happy couple at the rehearsal dinner.

Ashley and me at the rehearsal dinner.

My sister, the beautiful Bride!

The very handsome Ring Bearer

My dad walking Ashley down the aisle.

The are married!

It was a gorgeous wedding. I am so happy that Justin is now officially part of our family. It was quite a party afterward also, I think a good time was had by all.

And now my speech:

Three days after my third birthday I was gifted with a baby sister. Of course I don’t remember Ashley being born or her homecoming. These early memories come in the form of photos I have viewed countless times over the years along with stories told to us by our parents of the early days. From what I hear, one of the most exciting parts of getting this new baby sister was that I also got a new Cabbage Patch doll. My mom can attest to the fact that I took the care of my new doll very seriously. As Mom took care of Ashley, I diligently cared for my own new baby. As I said, I don’t specifically remember this, but I do know that before long the Cabbage Patch doll was cast aside and treated just like any other toy. Evidently my assistance was much more crucial in taking care of my new sister. I didn’t know it at the time, but I can tell you for sure as I stand here today that it wasn’t just my sister that was born on that day nearly 25 years ago, it was my best friend.

I have always made every effort to take care of Ashley, her happiness and well-being has always been very important to me. It would be fair to say that I have had many hopes and dreams for Ashley. My greatest wish is that her life would become all that she wanted. Ashley is a wonderful person; full of life, happiness, smiles and spunk. Ashley, when it is cold outside, continue to show the world the warmth of your smile. You will never know how much that smile means to so many people. My sister has always marched to the beat of her own drummer and I admire her for that. The best thing about our relationship is that it has always been reciprocal. Although in many ways we are polar opposites, this has allowed us to compliment each other. It seems that whatever one of us needs, the other is right there to offer.

Ashley and I have always had each other. We have been through so much together, good and bad. Ashley has always been there right by my side, and I have tried my best to do the same for her.

Today, Ashley and Justin have pledged their love to each other in front of God and all of us. They have become husband and wife and vowed to be there for each other in sickness and in health, in good times and in bad. Ashley, I hope you never look back, but never forget all the ones who love you in the place you left. But really, you have not left. Our family has grown today. The commitment you have made to Justin today does not in any way change the commitment that I have to you. True, we have never taken vows, but we have the bond that only sisters share. Today, through your vows I have the pleasure of sharing a new bond with Justin as my brother.

As I said, today, my husband Wes and I have gained a brother in Justin. I know I speak for both of us in saying that we feel very blessed. Justin is a wonderful man and compliments our sister perfectly. He loves her as every man should love his wife. They are lucky to have found each other and we wish them all of the happiness in the world. I wish that their life becomes all that they want it to. Know that we all want the same for you. Dream big, love each other, and keep smiling. I love you both very much.

Walking and Talking

2009-08-05T21:02:00.005-04:00

Little Man has really come a long way with both walking and talking lately.

First the talking. He has probably 5 words: Mama, Dada, Carter, this, doggie, Grandma, Nana. Ok that is 7. Today he was holding my cell phone, which is something he isn't usually allowed to do but he was really trying my patience, when someone called on the home phone. He had the cell phone up to his ear and said "hello". Of course a stranger on the street wouldn't have recognized what he said at hello, but he definitely said it. He also knows several signs including Daddy, eat, more. I can't for the life of me get him to sign Mama. Little stinker. It is wonderful to see his language develop.

Ok, walking. Little Man has certainly earned his new nickname, "Spider-baby". He has been cruising for quite some time, and in the past few weeks has realized that he does not need furniture to cruise. He can literally cruise around the entire house using walls, molding, anything he can get his little hands on. And the boy is fast! He took his first steps 4 days after his 10 month birthday, but quickly became apprehensive, deciding to stick with the cruising and crawling for the most part. O is now a full blown walker. He still dabbles in cruising and crawling, but he will walk across a room, taking great care with his balance and keeping his eye on his destination.

In addition he has become quite the climber. Who am I kidding? He is a monkey. Our stairs sort of fan out at the bottom, making a normal baby-gate impossible. The result- he is constantly making a break for the stairs with the intention of booking it to the top.*

Here he is trying to climb up the sides of the stairs.

Our temporary solution was to put one of our ugly hand-me-down benches from our dining room set in front of the stairs. This was the result:

Not wanting to spend my entire day retrieving Little Man from the bench, I quickly searched for something to keep him from climbing around the bench (see below). He hasn't figured out how to traverse this particular set-up yet, but I am certain that it is only a matter of time. We really need a permanent solution. I did find a large gate with multiple pieces that we could finagle for the space, but it is rather pricey. Suggestions welcome!

*Disclaimer: I was within arms reach for these photos to prevent Little Man from taking a spill, but of course had to document the climbing.

Welcome to the Hive!

2009-08-05T17:51:00.003-04:00

As some of you may know, since Owen's health problems developed almost a year ago, I've been writing on a Care Page at http://www.carepages.com/carepages/owenreillybryant.

CarePages is a great site, but I think my blogging needs have outgrown it at this point for several reason. First of all, although he still has at least 2 surgeries ahead of him, Little Man is doing much better. In fact, he is thriving. Secondly, I have a lot more to talk about than ureterostomies, leg length discrepancies and doctor's appointments. O is a beautiful, wonderful, funny, spectacular and developmentally "normal" little boy with some health issues. I'd like to share with you more of the non-health stuff that makes this hive buzz everyday. Along those lines, I also have Carter who is a wonderful, active, smart, hilarious 3 1/2 year old. He gives me lots to talk about too.

Shortly I will be posting over on the CarePage and linking to this site. I may still post health updates there as well as here, we'll see how it goes. Anyway, I hope you join me for the ride and enjoy!