Ryan has been a busy bee. Yesterday she had her 4 month well-baby appointment with our regular ped. She was very impressed with Ryan. Considering everything that Ryan has been though, she is looking good. She weighed in at a whopping 11 lbs. and 2 oz. which means that she’s steadily moving along the 5th percentile range for weight. Although she is still quite “floppy” when being pulled up by her arms and doesn’t bring her head up with her body, she can hold her head up for short periods of time. Her legs are very strong though and we’re thinking that she’s just hypotonic in her upper body. The doc was happy to see Ryan tracking her flashlight too. We talked about her sleep habits and how Ryan can sometimes sleep through the night and sometimes she’s up to poop, eat and play (the playing is not our idea) so the doc said it’s time to let her cry, which we knew but just needed someone to tell us. She got her shots and cried, but otherwise, she did well! So last night, when she was up at 4:00 a.m. I changed her, fed her, and let her cry in her crib. But she only fussed for 15 minutes and then fell asleep! She was up again at 6:00 but we ignored her fussing and she fell asleep again!!! We had to get her up to feed her before our trek down to Children’s today. I hope tonight goes just as well!
This morning was our follow-up with the feeding team. We saw the dietitian first and she was very happy with Ryan’s weight gain (her discharge summary even said that Ryan is gaining weight “beautifully”). We asked a few questions about the formula concentration that we are using and we’re going to be sticking with the increased calories for now. If it ain’t broke, don’t fix it. She still just needs to get 17 oz. per day and almost every day she’s been exceeding it by a few ounces. Then we had to wait for the gastro doc. That took FOREVER. So long in fact that Ryan and I got a cat nap while waiting and I loved every minute of her sweet breath on my face.
The gastro doc was also very happy. He said that the way she has improved with her eating (and not spitting up) was the best outcome that they could have hoped for. She has gained 1 and a half pounds since the 6 weeks that they have seen her. Even though she’s in the 5th percentile for weight compared to the general population, she is in the 95th percentile compared to her height. She is 22 and a half inches long. She’s only grown 2 inches in 4 months. She’s just going to be a tiny girl – which is very typical of kids that have feeding issues due to chromosome abnormalities. But I’m still so glad that we didn’t go the feeding tube route… we’re going to get this girl to keep mouth feeding. She’ll probably be starting solids later than what is typical because of her chance of aspiration. She also thrusts her tongue out of her mouth and that will probably stop as she develops. Then talk turned to poop. Ryan’s poop has been pretty watery, foamy, and really stinky for a couple of weeks and she’s pooping 4 times a day instead of her usual 1 (too much information?) but the doc took a look at it and isn’t concerned. We were worried about malabsorption but since she’s gaining steadily, that’s probably not it. We’re just supposed to keep our eye on it (and our nose) for a few weeks and if it gets worse we should call. We go back for another follow-up in May. In July we’ll go back once again to see the entire team and they will assess her while she eats. She’ll probably get another swallow test at that point too so we can see if she’s ready for solids.
This afternoon was Ryan’s Help Me Grow appointment at our house. First we did baby massage and she liked that a lot. She did a little playing with things that might stimulate her vision, a little practice rolling over, and a little tummy time – which she hated, of course. She was on a thing called a “Tumsy” but I think she does better just on the floor. Charlie also got in on the action and massaged a baby doll and rolled around. I had to put on a TV show for her at one point though when she decided to put a pom-pom on Ryan’s head and then lay on her… she just can’t get enough of Ryan!! We’ll keep practicing with the techniques that our therapist showed us and see her again in 2 weeks.