A Very Personal Challenge

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

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

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!

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.

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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

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

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

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.