Deklyn's Doing Awesome :)

Our sweet little Deklyn is doing so well! He's having issues with swelling because he can't move much, and they think it could all of a sudden be a side affect from the drug but its nothing super serious just uncomfortable for him. We are really hoping they can come up with something to fix this issue for him! But really other than that he is just doing amazingly!

You see alot of different situations when you are in NICU, Some babies are very sick and others just need a little help till they are ready to go home. Today we got to see a family who had been there for 2 months take their baby home, that was so nice to see. You see some families who do not know if their baby will make it, and that is very hard to watch. I have not once felt like I didn't know if Deklyn was going to make it and I have never felt like I was watching Deklyn die, but you see some families go through that. I could not even imagine going through that. You see some babies who are sick for reason beyond anyones control, but then you see babies who have issues because of the choices their mom made while she was pregnant and my heart just aches so much more for those babies. Sheridan and I had been talking about how we don't see very many parents in NICU besides us, but we just recently found out that some of the babies are in NICU because their parents were not fit to be parents, and they will be in NICU until they are well enough to be adopted.

I just can't imagine as a parent not being their for your child. I am happy for the babies that they will go to a better home then they would have been in, but as a parent I just don't understand how you wouldn't want to change your life for your child.

I have had some people asking me what exactly is Hypophosphatasia (HPP), and how Deklyn got it. When Sheridan and I found out something was wrong, we met with a genetics doctor who actually guessed that Deklyn had HPP right away. Their was someone in Sheridan's family with HPP so we brought it up as well that it was somewhere in the family. We both got blood taken from us and they measured our alkaline phosphatase (something in your body that tells you to make bones) levels. In most people this level should be 120 if you carry the HPP Gene it will be much lower, for Sheridan and I this was the case. They all sent our blood to be tested for the Gene and it came back that Sheridan and I both carried the most severe gene of HPP. So after that all signs pointed to HPP. We could have done more tests to find out for sure but Sheridan and I both prayed and agreed not to.

You can carry the gene and really have no idea, until two people like Sheridan and I have a baby and get 1 or both of the severe genes. They think because Deklyn's case is so severe and when he was born his Alkaline level was less than 1, he more than likely got both the genes. HPP can really show up at anytime in someones life. When it shows up in a fetus it is considered lethal, but it can also show up in children and adults and can be as simple as having bad teeth or arthritis. The rare and most severe form (what Deklyn has) shows up in 1 in 100,000 born babies.

For what HPP is.. simply, its a rare bone disease that makes the bones not mineralize properly. So they are either very soft, or not even there. There is nothing else wrong with Deklyn, he shouldn't have any problems with learning. He might be off to a slower start with walking and stuff like that just because he has and will be confined to a bed for the first part of his life. It only makes sense that it would take him a bit longer to learn some things.

I hope that has answered some of your questions! Please keep in mind I am obviously not a doctor or nurse! I'm just telling you what I've been told and how I understand it.

I just want to say Thanks again to all of you who have been supporting us in anyway! To all of you who baked or bought baked goods at the bake sale thank you so much! I really feel like saying thank you is just not enough to all that has been done for us, but right now saying thank you is just about all I can do!