There Is Always Something To Be Happy About

The last few days have brought some ups and downs for us. Deklyn has still been doing really well, last we left off with doctors saying we had no sign that the drug was working and now they are basically 100% sure it is! We can't physically see it yet but he is getting way more calcium than anyone should and only normal amounts are showing up in his blood and urine so doctors are telling us that from previous experience with the drug and just common sense it only makes sense that it must be going to the bones! So we were of course very excited to hear that!

For the downs.. they really haven't been SO bad. Deklyn has started to cry alot which is really hard to see. I've been able to handle not being able to hold my baby but when he starts to cry I just want to cuddle him and make everything better. The hardest part of him crying is he actually can't make any noise because of the tube going down his throat, so your just looking at a very angry & sad little baby trying to scream as loud as he can but he can't.. as  his mom that is very hard to watch. Today has started off much better already for him crying and being upset. They changed his respirator which they were just guessing that the one he was on was making him uncomfortable but already today he seems to be much more calm and not crying every time he is awake.

We've started to be able to read his cues for what he likes and doesn't like. We can tell when he likes something if it lowers his heart rate and his oxygen level goes up. We've noticed he really likes it when we read him stories.
We've really been learning to just take one day at a time, its so easy to look to months from now and wonder where he will be but its really important to just think about now. What are his improvements for today. One of the doctors came and talked to us and I know she meant well, but started talking about a year or so from now, how he'll probably still be in the hospital and how he'll probably need all kinds of surgery's. How we are not going to be able to hold him for a very long time yet, and how eating is going to be extremely difficult for him because he'll be feeding from a tube for so long. She made me feel very discouraged but I had to remember that we have no idea how this is going to go. Everything she said was a possibility and not what had to happen, and most of these doctors aren't taking into consideration that we have the most amazing God on our side and absolutely anything is possible through him!

Its so easy to think, "Well if God can do anything why didn't he heal our little boy" but the thing is... he is! Its not happening exactly how we hoped it would, but we really don't have anything to complain about. Our little boy is alive, and that wasn't supposed to happen. He's getting stronger everyday, we can feel his skull getting harder. I may not be able to hold him right now, but I know that will come when he is able. I may not get to experience things the way most moms get to but I have the most precious little boy I could ever ask for. Even if I don't get to do things the way most moms get to, I still get to do them. Maybe not right now or if I do get to its with a doctor helping me but honestly I don't care. My little boy is alive and that is something to be happy about!