Update on Landen

If you remember from the last update on Landen he had blood work sent off to UCLA. Well, several weeks ago we got a call with the results. It didn't reveal much new information but basically confirmed a couple of things. First of all it confirmed Landen's LIG4 (DNA repair gene) gene does not work. The purpose of this gene is to repair DNA. They explained that everyday our DNA breaks apart and this gene basically is responsible for putting it back together. Since Landen's does not work he is radio-sensitive. This was also suspected but confirmed through the blood work. Radiation is dangerous for him. Obviously this means he must avoid unnecessary radiation. He can only have reactive x-rays, not proactive x-rays. We're not sure yet what happens when he is exposed to radiation. We also don't know how this will affect him going forward. In the past when we've had appointments in Delaware x-rays are very routine. I'm sure he will still have to have x-rays especially for his hip but I'm sure they will significantly reduce the amount of x-rays he receives. If there is a way to avoid the x-rays even for the hip I'm sure they will do that as well. Basically this is very new information and they said Landen is helping them write the books! This was prior to the LPA Conference in Dallas, Texas. The doctors from around the world that are included in this research had plan to meet while they were there and this was suppose to be a "hot topic." They promised to keep us updated as they learn and discover more.


A few weeks after receiving the results I got another call. Instead of there being a total of 5 known children with the same exact gene mutation I was informed they had discovered another little girl with a non-working LIG4 gene. So as of right now there are 6 children (including Landen) with this new type of primordial dwarfism. Three are in America and three are overseas. As a result of this new girl's discovery they learned Landen may possibly deal with low blood platelets. To our knowledge this is not something he is dealing with right now. It's just something to look out for.


We received sad news on July 2nd. A 23 year-old primordial dwarf passed away. We are uncertain of the cause of death. This young girl also had a sibling with primordial dwarfism. Our hearts certainly hurt for this family. This is the first PD death we have learned of since Landen's diagnosis. Thankfully the life expectancy today is much longer than it was several years ago. However, it was a tragic reminder of the severity of PD.


We were able to get an updated weight on Landen. Unfortunately, he had to go to the doctor to get it. He had a horrible cough for several weeks that would not go away so we took him in. It ended up being an ear infection. Thankfully he is much better now! He now weighs 15 lbs and 8 oz! We can't believe how much he has grown!


Landen has been doing really well and we are so thankful!! He is a super busy little guy! He LOVES hats, cell phones, salt and vinegar Pringles, and M&M's or any chocolate!! The first thing he asks for just about every morning is his hat! LOL! His eating habits are about the same. He just started wearing a size 2 diaper and his clothes size varies. In shirts he can wear anything from a 3-6 month to 6-9 month. In pants, shorts or one-piece outfits he's been wearing 6-9 months. However, his pants are starting to get short. I picked up a 12-month pair of pants and surprisingly they fit him really well! He continues to say new words and make sentences more and more. We've had one small attempt at potty training and that didn't go so well. But hopefully that will be his next milestone! Landen is such a loving little boy!! He is constantly giving hugs or kisses! One of his newest words is "snuggle." The way he says it is so precious! We love snuggling! ;) We feel so blessed to be Brayden and Landen's Daddy and Mama!