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.

Vacation, Business and a Birthday

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

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

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

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.