16 Apr GI Update
Ok, so GI update is just an understatement at this point! Something clicked in this child’s head on Sunday afternoon, and he decided eating wasn’t all that bad. The same child who had never fully finished even a piece of crust of pizza (he would take off any cheese and scrape the doughy part off before handing the rest back to you…) ate a whole (albeit small) piece of pizza with cheese, crust, sauce, and spinach! So that day, we decided to hold his feeds at naptime, and he ate a few pieces of pasta from the casserole at dinner that night too. Since then, some days/meals haven’t been anything to write home about, but then there have been some like this…
(Still no camera, maybe by next week…sorry for more phone pics.) I could eat Chik-fil-a every day of my life and not get tired of it, and I have been waiting on pins and needles for the day Keegan would share my love! Wednesday, we picked up his first kids’ meal EVER for lunch and brought it home (I haven’t quite mustered the courage to expose him to the actual restaurant/playscape yet!). He ate two of the four chicken nuggets (smaller than that place that starts with an “M”), and probably 6 french fries. We attempted some halved grapes with that to no avail, but it was a pretty darn good start!
All that being said, Keegan had a GI appointment this morning, and we decided that we would keep up the trial run of no daytime feeds until today to see what his weight was. He was down a bit but not too much. He will get a weight again next week when he goes in for his monthly labs and breathing treatment. The GI doctor told us that if his weight stayed stable next week, we could continue on without the daytime feeds at all!! If his weight is down next week, we’ll check again the week after and reconsider. His oral intake (real foods he’s eating by mouth) probably isn’t too much different from a lot of 2-year-olds, but he doesn’t necessarily benefit/absorb those same foods like a normal toddler either. Needless to say, the doctors are definitely behind us and rooting for Keegan to stay off the day feeds too.
I can’t even begin to describe the awe I have at how much progress Keegan has made in the last three weeks alone! Had you told me a month ago that he would be on night tube feeds only by this point, I would have laughed. Keegan (and more importantly the amazing God watching over him!) continues to surprise me every single day. This change in feeding came somewhat gradually, but it really was like a little lightbulb just went on his head last weekend and voila! I’m now waiting anxiously for the day the speaking lightbulb goes on!
In other news, the baby’s room is painted, and we picked up the bedding earlier in the week. I hope to have pictures by the weekend for you. I think it looks pretty darn good! Getting the room set up has probably brought Keegan the closest he’s ever been to realizing that a baby’s coming to live with him. You can tell he is wondering why his old room is looking so different, and we keep referring to it as “baby Audrey’s room”. Not sure it will help too much overall, but it’s a start. Today, he woke from his nap early, and my friend, Marci, was here with her three-week-old baby, Noah. I was holding Noah when I turned Keegan’s light on, and he gave me a pretty darn pitiful look when he realized I couldn’t pick him straight up out of his bed! The first sign of budding sibling rivalry? We’ll see!
Speaking of little Noah, I haven’t been able to share any pictures due to not having my camera quite fixed yet, but I did find this one from the day after he was born on my phone. Little Noah and his parents are doing well, and we’re so excited for them! Here he is!
