We’ve had a pretty good week this past week. Reed and I took a little trip to Andalusia over the weekend and I think we both gained about 12 pounds each. I’m sorry but my grandmother is one of the best cooks around. Not only does she cook delicious food but she cooks a LOT of it. We had a good time down there. Reed got to “drive” a few tractors which he loved. He’s the center of attention whenever he visits and he eats it up. Plus my sister was down there and that made it even better for him. I love being down there…it just makes me so thankful for my family. I can’t wait to be able to take Gaines.
Gaines by the way has been doing awesome on ¾ of a liter and we actually noticed last night that he somehow had gotten bumped down to a half liter. And wouldn’t you know that little joker was handling it fine! Beau was fiddling with the concentrator (turns room air into oxygen) and noticed that Gaines was only getting a half liter of oxygen. Now, a few weeks ago I wouldn’t have put it past myself to “accidentally” turn him down and ask the doctor if it was ok after the fact, but we really and truly have no idea how that happened, or how long its been like that. Now that we are actually in the process of weaning I’m a lot more patient with the process so I’m fine with going slow. We debated about whether or not to leave him alone or to put him back to ¾ and finally decided to go back to ¾. Only because we reduced his Lasix yesterday too and we didn’t want to push too much on him too fast. The good news is, when the time comes to cut his oxygen to a half liter, we are pretty confident that he’ll be able to handle it. And you can be sure that next Monday, once we are sure he’s handling the cut in Lasix, I’ll be on the phone with the doctor asking for the next step. How exciting for Gaines!
In other positive Gaines news, he had physical therapy yesterday and got what I think was a great report. His therapist was very pleased with the progress in his sitting and gave us some tips on helping him learn to crawl. She felt like he’d be crawling in the next month or two. We think it could be sooner than that. You can see it in his little eyes that he’s trying to figure out how to get his legs under him. Also, she was very pleased with the improvement in his legs and gave them an 8.5. Not quite the 9 I was hoping for but definite improvement. She told me that she “definitely saw walking in his future”. I was so glad to hear that! She said that at this point she couldn’t promise that it would be without a limp or something but until now we haven’t had a vote of confidence like that in the walking department.
Now, she felt like he wouldn’t be walking until September at the earliest and said that it could be next spring but that it would happen. She based that on the fact that she thinks he’s about 2 months behind his corrected age (which is 8 months…so she thinks he’s about a 6 month old right now…and p.s., according to my figuring that’s a little conservative…I’d put him at about 7 months but that’s just me) and that on average kids walk around one year (some earlier, some later) so that would mean 2 months after his due date of July 7 which is September. Now, the reason that I’m ok with that is this. They base preemies’ adjusted age on their due date which is about the time most preemies leave the NICU (their due date)…Gaines didn’t leave the NICU until 2 months after his due date. I just really don’t think that’s a coincidence. While the nurses held him and loved on him as much as they could (as did we on our visits), it’s just not the same stimulation, etc that he would have gotten if he’d been at home in July. Plus he’s progressing at a consistent rate so I’m happy with it.
AND…then there was this part. The therapist was showing us some new moves to do with Gaines to help with his balance when standing. She was explaining that when you lean him forward he should get on his tip toes to balance and that when you lean him back wards, he should flex or lift his toes off the floor. When she saw him do the toe flex business she was really excited for him and said that seeing that, she could give me even more confidence on the walking. She said that it showed his front calf/shin muscle (whatever it’s called) was working. She said that muscle was very hard to stimulate and that the kids who couldn’t really use theirs were the kids you see in leg braces…and Gaines can use his!
If you don’t believe that all of this is God answering prayers…then I don’t know what…I’ll have to call you crazy. I mean, Gaines should not be here and here he is weaning oxygen and medicines like a champ and making steady progress on his development. Every night I pray that God will make Gaines an example of His faithfulness, mercy and compassion and that people will see a complete miracle from Him in Gaines. I pray that Gaines will grow up to be as smart, active and verbal as his big brother. Getting these good reports just fills my heart with joy. Please keep him in your prayers as we continue down this road.
Love to all,