Today we took in Greyson’s own bouncy chair for him to use. One of the nurses said he might like the vibrations that it has as apparently kids with chronic lung disease often really like shaking. He seemed to like it although he did have that “OK now what is THIS!” look on his face for almost the whole time he was in it.
Today we got to talk to a couple that we met in the NICU. Their baby has progressed to the point where they have moved upstairs so it was nice to have the chance to see them and talk about how things are going. It is sad that you meet people while you are in the same room, and then they move and you don’t get to see them or how they are doing. Unfortunately it is also a reminder that Greyson doesn’t move much! To date he doesn’t hold the record for the longest NICU stay (although we are certainly on the long timer list) but might hold the record for the fewest moves. In 19 weeks he has only been in three different spots, and one of those he only stayed for a day. It leaves you with the feeling that everyone else is moving and you are not.
We met with the Dr. today and talked about Greyson’s progress and prognosis. Basically the answers were what we were expecting, it is just going to take him a lot of time. The one new thing was that they ordered a consult with a gastrointestinal specialist. It appears Greyson is having more reflux and they want to have him evaluated to see if there is a need to treat him more aggresively. Reflux can have an impact on respiratory function, and even on the lungs ability to heal. Even if it doesn’t help with Greyson’s breathing, it would be nice to get it under control as it is very clear when he refluxes as it causes him a great deal of pain. It is horrible to watch as there is nothing you can do and he looks at you with eyes that say, “why aren’t you making this extreme pain go away?”. He’s a brave and tough guy to endure all that he has to on a daily basis. We continue to pray that God will place his healing hand on him, but also that God will be with him to comfort him until he gets better (well of course we pray Greyson will always know God’s presence but you get what I’m saying).
I would love to have a copy of the pictures of Greyson and I together! Hopefully I took a decent picture, we know Greyson does, he’s a camera star!
We woke up to another couple of inches of snow this morning! No school closure though. Greyson we will start praying specifically for your reflux as well as your lungs. You look like you are just hangin out in your bouncy chair. I hope you got to play some fun games with your Mom and Dad today too! I hope that you have a great day today also and remember that Aunt Deb and I are coming for a visit in a week and two days
Love Tam
Greyson, I will keep praying for your reflux as well as your lungs. I know how that feels from experience and it is not fun. You are such a fighter and I know you will get through this as well. We’ll pray this dr. will really get a handle on this when he comes to see you. I love you so much and wish I could take this all away right now, but God knows all about you and he will keep you in His hands.
Our prayers are always with Greyson! I can’t imagine watching your little one in pain and not being able to do anythign about it! You two are truly amazing and it only proves that God is with you! Hopefully you all feel our love and prayers even when we cannot be with you! You are on our minds constantly! Please tell Greyson that Aunt Deb is getting to come (Thanks to Aunt Tammy and Grandma Terry and Uncle Ron) and she can’t wait to love on him!) Hang in there! You are loved!!!
Grayson looks good and your commentary is interesting and sometimes is funny; which makes it really interesting and facturel too. Our prayers are unceasing and with love. You keep up you strength and try not to get any more stops by the law enforcement ( unless they want an update on Grayson). All our love and prayers to all three of you. M & D