So Monday was supposed to be this big day that we’ve all been waiting for, the swallow study. The day that would let us know if Aleck is aspirating his food and how badly, the day that would tell us if he needs surgery on his cleft, the day that would determine whether or not we could move onto solid foods. Despite my complete exhaustion for the entire issue of Aleck’s feedings I geared up for the day of grand expectations. My directions were I could feed Aleck up to 3 hours before his test. So I woke up at 5:30AM and Aleck finished eating, not his bottle-rarely his bottle, and we started our day as usual, just earlier. When we got the hospital they took us almost right away, and had a chair set up just for Aleck next to the X-Ray so they could watch him while I fed him. The speech pathologist filled his bottle with delicious, yummy Barium, and Aleck took about two sips before deciding that this was just not for him. He’s so well mannered about the whole thing, using his tongue to push the bottle out of his mouth and then giving us big smiles to show just how proud of himself he is. The speech pathologist was funny and she just kept saying, “You little stinker” in a sing-song voice. I think in total we got about 4 swallows that they could watch from the entire process. Of course he didn’t aspirate in just those four swallows and the entire morning felt like a gigantic waste of time.
I’m just so over it. Yes he still screams, cries, complains during feeding times. Yes he still spits up a lot, all over the shoulder of my shirt yesterday 2 hours after a feed. Yes he cries when he burps, clearly it doesn’t feel good and he’s miserable. Yes he’s still on two forms of acid-reflux medication. Yes I wish the crying during feeds would stop and it would be really nice if they only took 20 minutes instead of 45 minutes to an hour for each feed, 4 feeds a day right now. And yes, I’m still constantly worried about his very slow weight gain and growth, but I’m over it. With everything else we have going on, I just can’t focus on his feedings anymore. There’s no way we are doing surgery on this poor boy for his cleft larynx. He barely aspirates anymore, sometimes once a day, but he goes days without choking, and all of this is taking the focus away both from the real issues at hand and from his therapy, stretching, and progress. Over a week ago I started him on Probiotics and it doesn’t seem like it’s made any significant difference, there is still plenty of crying and complaining, but maybe it’s reduced it, I honestly don’t know anymore, I honestly don’t care anymore. I just want to start introducing him to real food, watching him love or hate whatever I’m giving him, having him spit carrots all over my face, you know, the good times.
Yesterday was that day! We started our first real food experience with some mashed up bananas diluted with water and warmed up. The spoon du jour was my finger and he seemed to like it a lot. Of course, he has no idea yet what to do with food in his mouth but he actively looked for it on my finger and made sure to put that part of the finger in his mouth. It was pretty sweet. I had him sitting up in the bumbo chair on the dinning room table and we had a blast. That is, until he got really hungry and lost patience for the game we were playing. So we moved ourselves to the couch with a bottle for another round of burp the baby.
Aleck uses burping as a way to practice his different vowels and noises. One week all I heard when he wanted to burp was “aaaah…aah..ah…ah..ah…aaaah..”. The next week all I heard was “eeee….eee…eeeeeee..ah…ah…aaaahhh.” This week he’s added in a constanant, the “b”. “bee..be..be…baa…ba…baaaah.” If having trouble burping gives him an excuse to practice his “talking” I’ll take it. That would be something good to come out of all of this frustration.
All in all he’s such a great baby. He smiles, he laughs, he works hard on his exercises, he loves being read books, and he dances in his crib every night before we start our bedtime routine. If the only tough spot, besides the whole Arthrogryposis maybe disabled for life thing, is feeding, then it’s not that bad, right?
His pediatrician wants me to wait to start him on solids, he wants to see what his weight gain is and mentioned to me some other tests we might have to do. All I can say is that if it involves knocking him out again, I hesitate to that until his hip surgery. The recovery is so hard on us and my heart breaks with how miserable he is when he wakes up. The speech pathologist I met at Children’s couldn’t believe I haven’t started him on solids and she wants me to make an appointment to go their outpatient clinic and have a team watch me feed him. Our nutritionist is coming tomorrow for a weigh in and we’ll see how he’s doing. He’s definitely growing as we are getting ready to ditch another batch of onesies. His torso length seems to be pretty much on target for his age, but his legs are so very short. He may be in 6-12 month one piece clothing, but he can still rock those newborn sized pants, no problem. I’ve been totally addicted to those baby leg warmers ever since a friend of ours got them for him. And even though on the Baby Legs website it says that one size fits most, and shows babies his age wearing them, he’s in their teeny tiny newborn leg warmers, and will be through the summer. What can I say, paired with a onesie and his active splints all we need is Olivia Newton John’s Physical to play throughout the house and we are good to go.
In other news, physically he’s making amazing progress. He’s started moving his arms, slowly, small amounts, but in ways he had never moved them. Lately, when I change his diaper in the morning he ends up dipping his hand in the poop (yummmm), and I when I’m carrying him on my shoulder he now moves his arm (again, very little movements) along my arm and I jump expecting to see a spider or something crawling up my arm. It’s a whole new world around here. Today he bent his elbow, himself, for the first time ever. I was in total shock when it happened, asked our OT if that’s what I was really seeing, and when I retold the story I found my eyes welling up with tears. In my heart I’ve been holding onto the idea that he’s going to be fully functioning, I think in situations like these you have to in order to keep going, but to see him improving so much so quickly, well, it’s beyond my wildest dreams.