Before I get to Gaines' big day, I just wanted to thank all of you who still read this blog...even if you just check in from time to time and especially for those of you who have prayed for Gaines and our family. Today's good report was due to your continued prayers. Reed and I visited Andalusia over the weekend and actually got "out" a little. I ran into so many people...some that I do not even know well...that would ask me how the zoo was, or if Gaines was crawling yet. I was just amazed at all the people that actually cared about my little boy and family and were still keeping up with us. I tell you, there are a lot of bad and crazy people in this world but for everyone of them, their are five good ones.
Our little Gaines has had a big day. He had a doctor's appointment in Birmingham today with his pulmonologist (more on that in a second) and when we got home this evening...he crawled! I cannot even begin to tell you how proud I am of him. As soon as I saw (and confirmed that he was actually doing it...you know how I feel about giving him false credit) I got the biggest smile on my face. I have not been that excited in a while.
I know mothers are always proud of their kids' milestones but Gaines' are just extra sweet. There are so many things that we haven't been sure about for so long and to see him do something like crawl just makes me so happy. There is just no way to know if Gaines will have any sort of problems from his spells of not wanting to breathe correctly until he actually marks something off his milestone list. Let me clarify...he's not crawling marathons or anything, but he crawls a few little "steps" at a time. Beau got it on video...its at the end of this post. Also, I think he might be pulling up in the next few weeks. Things are just really starting to click for him and I could not be happier.
In medical news, Gaines had a great check-up today. We've been given permission to turn him down to a half liter on his oxygen. I'm waiting on him to go to sleep tonight before we do it. He's just still when he sleeps and we can get a good sat reading on him and really tell if he's handling it ok. Say a little prayer that it will go well.
The plan oxygen-wise is just to leave him at a half liter until his next appointment (in two months). Hopefully by then he'll have gained enough weight (he was 16 lbs 13 oz today) that we can cut his other two diuretics. Once he gets big enough, he'll have sort of outgrown them. I'm hoping that at his next appointment we can cut the diuretics and have a plan to wean oxygen over the next couple of weeks. They explained to me today how they will know when he is ready. I won't bore you with all of it but one part was by watching his carbon dioxide levels. At his first appointment his was at 39 and today it was at 33. When his is around 28, we'll know he's ready to go without oxygen. So...prayer requests, 1. Weight gain! We want to lose those diuretics. 2. Lower carbon dioxide levels and just all around lung development. All in all, his doctor only had great things to say and even commented on how well he was doing developmentally. A gold star appointment.
Oh, we've also gone to albuterol treatments as needed and not twice daily...yay! Hate it for you CVS.
On a more serious note...I never leave Children's Hospital without being thankful that we are only dealing with Gaines' lung issues...problems that will get better. There are so many kids at that hospital that would be grateful to have Gaines' problems. I mean, you see those little kids with bald heads and you know what they are there for and it just breaks your heart. Or kids in wheelchairs or you hear your doctor talk about his chronic ventilator patients. Everytime I'm in the parking deck there I think, everyone of these cars is here for a sick child...and that is just on one given day. Be thankful for healthy kids and please say a prayer for all of those that are not...and the ones dear to my heart, the ones who aren't born yet but are fighting to have a chance to try. Little ones like my Gaines who is not only trying but succeeding. Was that a little cheesy? Sorry...but he is. That little joker is a miracle.
Now...I hope you all appreciate the sacrifice I made for you tonight. I will wake up in the morning and my house will not be straight and no one's clothes will be picked out and I'll be rushing around with a little extra "my house is a wreck" stress but at least you all will be updated. Kidding of course...but my house really has been neglected tonight. Does my sarcasam come through or do I need to specify the kidding? Either way...
Oh...I turned Gaines down to a half liter and guess what? He's satting 99. Granted he's sleeping flat on his face which could account for a 99 but wow! Please pray that it continues.
Love to all,