This was at a pit stop along the way! We found mini coke bottles and Landen picked Cherry Coke! :-)
After we arrived and got settled at the Ronald McDonald House we contacted the Horst family and we made plans to meet. The Horst family has been blessed with four children, three primordial children and one child with Mowat-Wilson Syndrome. Their oldest is the same age as Landen but he was not with them because he was back home with Dad so that he could attend school since he didn't have appointments this time. Landen and their 3 year old got along great though and really enjoyed playing together!
We hung out and talked for quite a while and enjoyed every minute!! It was so nice to connect with a family who really understands. We enjoyed getting to know them!!
We had to be at the hospital on Thursday at 10am. Landen was ready!!
Our first appointment was with Dr. Bober. Mrs. Linda has checked us in ever since we've been coming...6 years now! She is great!! She loves Landen and he loves her! She played with Landen while we waited to go back. She told us she plans to retire next year so this was probably her last time checking us in. We will really miss her!
The appointment with Dr. Bober went really well! We got caught up from our last visit. Landen weighs 23 pounds and 13 ounces and he is 38 inches (3ft. 2.15 in.) tall! Dr. Bober showed us his growth chart and said it revealed nice, consistent growth. Dr. Bober brought up Landen's mobility and made sure we understood that Landen will tire more easily and quickly when there is a lot of walking involved. He suggested finding something that Landen can use in those situations. This isn't something we had really thought about yet but we have noticed it. We've just been accomodating him as we can when he says he's tired. So this definitely has given us something to think about.
One of my questions this time involved Landens' care in general. Since we moved two and a half years ago we had to switch doctors and we weren't really sure what our plan would be with that. Now that some time has passed and we are a little more familiar with our local medical care we decided to move Landen's local specialist care to Levine's Children's Hospital in Charlotte. As expected this has been a process. It's kinda felt like his care has been on hold and now we'll be catching up. I wanted to make sure we were doing what's best for Landen and everything we possibly can. Dr. Bober assured us that we were and that we weren't missing anything. He said Landen's biggest issue is his immune system so he encouraged us to find a great immunologist. One issue PD's can have is scoliosis so Dr. Bober examined Landen's back and said it looked good! We were thankful for a good visit with Dr. Bober!
Landen decided to be silly! LOL!
Next we saw Dr. Mackenzie and a medical team. They examined him and asked a few questions. We told them that just recently Landen has been complaining about his left hip hurting in the morning when he gets up. That's the same hip he had surgery on at 10 months old. Dr. Mackenzie then told us that there had been some changes to that hip. He took us out to the computer and showed us the x-ray and it was easy to see what he was pointing out. His hip has not formed correctly. He said it could cause some stiffness and that may be what he's complaining about. For now the plan is to keep an eye on it. He'll have it checked again next year when we go back to Delaware unless it starts causing problems. If it does he may have to have surgery on it again. Other than that everything else checked out great with Dr. Mackenzie!
Next we met with Dr. Ford and Dr. DeFelice in Allergy and Immunology. This appointment was extremely overwhelming! Mainly because by this point we were tired, hungry and had information overload! LOL! Despite the circumstances we did our best to answer a ton of questions and tried to understand everything they were saying. We've only seen them one other time and it was a while back so it felt like we were starting over. After our conversation, their exam and their review of Landen's bloodwork they feel like overall Landen is doing really well. He is due for his annual bloodwork that checks the function of his B cells and T cells. These results will tell them more and give them a better opinion of how his immune system is functioning. They did bring up the possibility of a bone marrow transplant a little more than we expected. They, along with Dr. Bober in our appointment with him, gave us the warning signs to look for that would signal his need for the transplant. Basically a sudden, drastic drop in his platelet levels that do not return to normal that could require transfusions and getting sick with viruses and infections that take a long time to recover from. Landen will have the bloodwork they need done at our local children's hospital in the next week or so. The doctors highly suggest a good and local immunologist to follow Landen. Thankfully, they called the children's hospital and found one they have referred us to. He will see the immunologist about four weeks after he has the bloodwork done.
All in all it was a great day with great appointments. We are so thankful for the medical team at Nemours A.I. duPont Hospital. They are wonderful!! After the appointments we were exhausted and starving!! As soon as we left the hospital we went to Charcoal Pit. This has been a tradition from the very beginning! We love their cheesesteaks and milkshakes! =)
After we ate we went back to the Ronald McDonald house and crashed!! After getting some rest, we met the Horst family again and hung out the rest of the night. We updated each other on our appointments and continued to get to know them. We plan to stay in touch and hope to meet up in the near future. We have never stayed in Delaware after appointments but now that we live farther away and we had an extra appointment, making our appointments take up most of the day we decided not to rush back and stay an extra night. We are so thankful we did that. We got to spend more time with the Horst family and it didn't make the trip as exhausting as usual. We were able to get some rest Thursday night and traveled home on Friday. Since we go through Roanoke, VA we were able to stop and visit Luke's grandparents and his uncle who happened to be in town. It was so nice to visit with them!
I think I covered everything! Hopefully, I will be back much sooner next time! ;-)
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