We went to Delaware nearly two weeks ago for Landen's routine appointments. I can't believe it's already been that long! It seems like we just got back! And yes I'm getting behind again on my blog. :-( Anyway, here is an update! We left our house around 6:20 am on Thursday, September 6 and arrived in Delaware around 1:20pm. Just in time to get checked in at the Ronald McDonald House and rest for a few minutes.
Ronald McDonald House
Entrance to the hospital
Then we headed over to the hospital for our first appointment with Dr. Mackenzie at 2:30pm. To begin with they took 2 x-rays of his hip. He DOES NOT like this part at all! Thankfully it was over with very quickly! After another short wait Dr. Mackenzie walked in and told us his hip looks perfect! It continues to grow and form together as it should! We were so happy to hear this! After the appointment you can imagine how exhausted we were so we went back to the Ronald McDonald house to rest. For supper we went to our favorite place to go while we're there....the Charcoal Pit! It has become a tradition and we've eaten there every time we're there! It was where I had my first chicken cheesesteak! I get it everytime! Luke loves the Philly cheesesteak and that's what he usually gets! Oh, and their milkshakes are soooo good! =)
We were still pretty tired after supper so we went back to the Ronald McDonald House and called it a night! As we got up and were getting ready Friday morning, Angie, Dr. Bober's assistant called and said we could move our appointment up half an hour! This worked out great and helped us get back on the road a little earlier than we anticipated! We met with Angie and Dr. Bober at 10:30am. We began by updating them on Landen's health regarding his two ER visits since we had last seen them. Dr. Bober always asks us a set of questions, mostly just general health related questions. He also always takes many different measurements of Landen and before we leave he always takes a picture of Landen! The main discussion at the appointment was getting updated on Landen's type of PD. However, there isn't a lot of new information.
Here is what we learned:
- There are now either 11 or 12 people that have been discovered to have this same new type of PD. Three, including Landen, are in the US and the rest are in the UK. There are 20 year olds in this group.
- Low blood platelets is something Landen could experience. This was learned because more people have been discovered and they commonly experience this. Landen's blood platelets will need to be checked once a year. We were also taught what symptoms to look for, what to do about it and when to take him to the hospital. Landen's blood platelets were last checked in December and were fine! Please pray they will continue to be! Three out of the group experience severe low blood platelets. Two of them have to get blood transfusions every few weeks and the other one has had to have a bone marrow transplant.
- In the last update I mentioned Landen is sensitive to radiation. We discussed this further at the appointment. We learned that it is not definite but possible. There is not a way to find out for sure. When Landen's cells were put in a dish and exposed to radiation the cells broke apart. This is what makes them believe of the possibility of being sensitive to radiation. However, they explained cells in a body and cells in a dish can react differently. Since we don't want to find out for sure we just have to be extremely careful with radiation. Of course one way is to use sunscreen but most importantly, Landen cannot have any routine x-rays or CT scans. Typically in children with PD x-rays are very routine so this will have to be handled differently with him.
Landen has grown a little bit. He now weighs 16lbs. 3oz. and is 29 3/4 inches. He has grown 2 inches and a little over 2 pounds in about 7 months. The doctors were very pleased with his progress and says he is doing really well! We are so thankful for great reports!! We got on the road as soon as we left the hospital, a little after 12pm. I was excited about the time we were able to leave because if we left much later we would've been facing D.C. traffic around 4-5pm on Friday....not good!! Going through D.C. was a breeze however as soon as we were past it the traffic started getting backed up and was that way for about 2 hours! We later realized there was a Nascar race in Richmond! Anyway, we got through it and we believe all things happen for a reason! We made it back around 8:30pm!
We are so thankful for a safe trip and great reports from the doctors. The research will continue on and while we still don't know a lot about Landen's type of PD we will continue on the path God has chosen for us and trust His perfect plan! We really try not to take anything for granted. We do realize it could be much worse and there are much worse situations! In fact, just this last week we learned of yet another PD death. He was 23 and died of an an aneurism. Our hearts go out to this family!
Thanks for following us on this journey and for the many prayers that have been spoken on our behalf! We certainly feel them and know God is doing great things through such a special little boy!
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