Gaines' Big News

So, we’ve got big news! Gaines officially passed his sleep study (where he was monitored sleeping without oxygen)! That was the last step in weaning him from his oxygen and we are now OXYGEN FREE! Well, not totally oxygen free as that is what we all breathe, but you know what I mean. No more tanks, no more concentrators, no more cannulas, no more tendergrips on his precious face. This is what we’ve been wanting for the last 28 months but now that its here, it’s a little scary. The oxygen has been a thorn in my side for so long, but it’s also been a life preserver of sorts (not in the way that its was literally a life preserver for Gaines but a figurative one in like something you throw someone in the water…just to be clear :). We were able to test the waters on being without oxygen knowing that we had this life preserver if we needed it. Now, little Gaines is swimming on his own with no floats. I hope and pray that he’s ready…and that we are ready for this. I worry about colds this cold/flu season and we may have a set back, but that will be ok. We’ll make it through. Can you tell I’ve given myself this little pep talk a few hundred times?
I hope all of that doesn’t sound like I’m not excited. I totally am. I mean, this is a big deal for Gaines and our family. More than anything I’m so proud of my littlest boy. That child has more spirit and spunk that any other child I know. Its sounds cliché’ but he’s really come so far. I look back at old pictures of him and I remember the ones that I thought were “good ones” because you could see his eyes through all of his tubes. My eyes are tearing up just thinking about it.

He’s making major progress (in my professional opinion) of getting caught up in other areas too. You’ll be happy to know that is talking is coming along and that he now says his version of “Excuse me” after he announces that he pooted or burped. I’ll call that progress. :)

Thank you so much for sticking with us on this journey. Your prayers and comments have meant the world to us. Please continue to keep Gaines in your prayers as we embark on this new phase of his life.

Love to all,

Brittany

Birthday List

Since Reed’s birthday is “coming up” in October, anytime he asks for something lately, I tell him that we should put that on his birthday list. I guess I’ve said it one too many times because last night he said, “Why don’t we sit on the couch and write down my birthday list”. So we did. I thought it was kind of funny.
1. batman watch


2. a star turtle that puts starts on the ceiling-his cousin had one this past weekend that he loved

 3. kid scissors- I love that he requested “kid” scissors but asked why in the world he needed scissors. “So that I can cut things”. Obviously. I took that opportunity to discuss the fact that scissors are for paper only and that we do not cut our own or each others hair. People have to go to a special school for that.


4. a batman toy that is also a spiderman toy- I’m sure they make those.


5. a green puppy-I assume stuffed since he is quite the “pet” keeper these days.


6. a man toy-like a spiderman or batman toy, but just a regular man.


7. spiderman bathtub toy letters-????????


8. a pet raccoon-I don’t even know what to say


9. sunglasses


10. a toy tree-I asked, “What do you do with a toy tree?” “You just pretend that its real”. Duh.


11. spiderman shirts and shorts that he can wear to school-all of super hero garments are pajamas or costumes. He is so mistreated. It’s sad really.


12. a toy ear-again, ?????????


13. a toy helicopter- “But Reed, you already have 4 or 5 helicopters (including a remote one that really flies-thanks Babs and Pop)”. “But I just need one more”.


Love to all,


Brittany