Landen had three appointments in Delaware on Friday, March 8th. Two of those appointments were routine follow-up appointments but the third one was with a new doctor. The last time we were there six months ago our geneticist recommended we see the allergy and immunology doctor regarding the recent discovery of Landen's type of PD. People that have a LIG4 deficiency but that do not have PD have a lot of immune problems. Our doctor thought it'd be a good idea for him to be evaluated as a precaution. We traveled to Delaware on Thursday and arrived early afternoon. The first place we went was the Charcoal Pit! It's our tradition and we love the cheese-steaks! On Thursday night we had an interview with the marketing manager of the hospital. A couple of weeks before our appointment our geneticist's assistant called and asked us if we'd be willing to sit down and share our story for an ad in the Little People of America magazine. We agreed and set up the appointment. She was so friendly! We really enjoyed getting to know her and sharing our story with her. I'm pretty sure she got a tad emotional. It's overwhelming to realize the impact what seems like normal life to us has on people. We greatly appreciate the opportunity to inspire other families! We have seen a rough draft of the ad but not the final version yet. The ad will be in the magazine released sometime this summer. Hopefully I can share it here!
While we did the interview Landen played in the awesome play room at the Ronald McDonald House!
This was taken as soon as we arrived at the hospital. He loves riding in the wagon and was ready to go!
It really helps carrying around all of our stuff as we go from place to place!
We had to be at the hospital around 7am on Friday morning for x-rays. When we left to head over to the hospital we were surprised to see it snowing! I had been watching the weather because we were concerned that we wouldn't make it to Delaware due to the snowstorm, Saturn. Thankfully the trip worked out and there was no forecast for snow on Friday! When we got to the hospital we realized no one was expecting it but they didn't think it would stick. Thankfully, they were right! We saw the orthopedist at 7:30. He said Landen's hips look great! The only thing he mentioned was that one of the balls in his hip socket is smaller than the other but it was nothing to worry about! Next we saw the geneticist. This is the lengthiest and most informative appointment. However, there really wasn't a lot of new information this time. We typically start off by updating them on anything and answering a lot of questions. Then the geneticist and his assistant will discuss anything new with us or review recent discoveries and update us on anything they are aware of. I can't remember the last count I posted but there are 11 people total in the world that they have found that have the same type of PD that Landen has. 3 are in America and the rest are in Europe. Next, the geneticist takes a lot of measurements! According to their measurements and charts Landen weighs 17 lbs. 6.7 oz. which is on average the weight of a 6 month old. He is almost 31 inches tall which is that of about a 15 month old. His head circumference is 39.5 cm which is equivalent to that of a 2 1/2 month old. So although he appears proportionate he really isn't. The geneticist was really pleased with his growth and how Landen is doing. The only things he recommended were a speech and hearing evaluation and to make sure Landen is getting more calcium each day.
Next, we saw the allergist and immunologist. This was more of a team of doctors. This appointment was well over 2 hours with tons of questions! Since this was our first visit it basically was an initial evaluation. They ordered a pretty extensive lab work up. Since it was a Friday they couldn't do all of the labs there with how they have to send them off so they referred us to Duke. Since this is getting lengthy I'll update about that in another post. The labs they ordered are all as a precaution and because of his diagnosis. They also did a basic allergy test while we were there. That was quite interesting. Here is what it looked like! They numbered his back and then touched beside each number with what they were testing for. One was roach....seriously?!?! I'll never understand that! Anyway, they waited about 15 minutes and then the nurse came back and measured the spots and said he was negative on all of them!
#2 is suppose to look like that
Needless to say it was an exhausting day. We finished up close to 1pm and got checked out of the Ronald McDonald house. We went across the street for gas and I noticed Landen was being unusually quiet! I was surprised when I turned around and he was already out!
We are so thankful for overall good reports and the great team of doctors and staff at A.I DuPont Hospital! I'll end with one of the interesting sites we pass on our trip to Delaware. We were sitting in traffic so we were able to get a good shot! I always enjoy looking at this building. It is the National Marine Corps Museum in Quantico, Virginia. Maybe I can share more of the interesting sites we pass along the way next time! :-)
Please keep Landen and our family in your prayers as we take one day at the time! Also, pray for his blood work to come back normal. We greatly appreciate the love, support and prayers we receive from so many people. :-)
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