Good Friday

Gabe had his weight check today and final RSV shot! He was not happy about the shot, ofcourse, but the word final has double meaning and double reason for some relief. First that it is one less thing we need to do and second, RSV season is coming to an end soon - there is light at the end of the tunnel. The weight check was good enough to show that Gabe is maintaining and not losing ground as he appeared to be three weeks ago. He weighed in at 18 lbs and 11.5 oz. I looked to see how much he weighed three weeks ago and it showed Gabe had gained exactly 1 lb. It is a good gain, but we didn't really gain anything in the percentile area. Our pediatrician seemed encouraged and satisfied with this for now. Since we are seeing Riley docs next week (Dr. Rouse in pediatric surgery and Dr. Stanley in Dev. Peds), next month (Dr. Macke in pulmonology) and again in early May (neuro at Riley), we will be getting weighed frequently enough to monitor this progress. The next two appointments are with docs who haven't seen Gabe in a while and I do think they will be amazed and happy with all that he has accomplished since their last visits, but I also wonder how they will react to his drop in the weight percentile. He is making so much progress and I hope we won't be asked to use the tube more, since he is doing so well orally. He even wakes up sometimes when he is hungry now. On the one hand, we do have the tube and we could put more down the tube at night, especially after he has gone to bed and before we go to bed. It would spare us getting up later if he falls asleep a little too early and maybe didn't take enough at bedtime. But as tiring as it is to get up and feed him if he awakens, hungry and crying, just a couple of hours later, I think I'd rather do that. It's normal. It's what babies do, especially during growth spurts. It can make the next day a little more challenging, being tired, but I still think I prefer the normal way. We've worked so hard to get away from using the feeding tube, to eating normally. Tonight at dinner I tried something different and was rewarded. Instead of green beans in the mesh feeder, I cut them into little bits and placed them on the tray. He picked them up in his little fist and did his best to cram the mashed up remains into his mouth, just as I had hoped he would. It was really just a couple of weeks ago that foods had to be pureed very thoroughly for him to accept them without gagging or rejecting them. Tonight he ate a piece of actual, non-pureed green bean! Ok, in re-reading that last sentence, it may only be really exciting to us, but we were pretty excited. I also mashed up some soft mac & cheese with a fork and he accepted that too - lots of texture! He also took 20 oz of milk today, which is pretty good for Gabe.

Well, it is getting pretty late. I don't know if tonight will be an all night of sleep or interrupted, so I had better get some sleep in while I still can. Before I go, I need to extend another round of 'thank yous', just because I think it may have been a while. Always know how grateful we remain to everyone who keeps us close in thought and prayer. There are times when life does feel a little overwhelming, in a normal way that life just becomes "a little too much", like it would for anyone. Everyone has their own struggles and they are important. We appreciate you lifting us in the midst of your own day-to-day worries and please know we think of you too. Hope you all had a Good Friday.