I feel like we have been steadily making progress, one step at a time, in the right direction with Kiran. It is a daily work and a diligent process, so I sometimes don’t think about it.
Physically, he is getting stronger and stronger all the time. He has started helping when we pull him from laying down on his back into a sitting position. He kicks his legs up and lifts his head – and uses those tummy muscles to help pull himself up! Those legs really are kicked up to his head often too, especially when we are trying to wrangle his brace on at bedtime! And he has started willingly putting weight on his feet sometimes! Our latest physical therapy exercise is to sit cross-legged with him on our laps facing us, tucking his toes under our legs so he can’t lift his feet off the ground, and lifting him just a little under the arms…then waiting, while supporting him, for him to do the work of standing up! And he does it at least a couple times every time (It makes it fun when mommy “eats” his neck every time he comes up to standing). I can’t believe the progress he is making. We still have a long ways to go to catch up, but I’m confident he will eventually get there.
Medically, he has been successfully weaned off the lasix for a couple weeks now! We had no issues with the wean (even though this mom took it a little more slowly than the cardiologist said we could….I’m conservative). Heart-wise, he is only on half a baby aspirin a day, and that should hopefully only be until after we see the cardiologist in March (It is just a post-op protocol and usually for only 6 months after surgery). We are also working to wean him off the omeprazole, and it is going well so far. We are down to only 6 ml a day and have a slow weaning plan in place (that I created myself after reading about the topic) that should have him off by the end of January. We have had no increase in coughing spells or vomiting, so it seems like it should be a success. It will be so exciting to potentially have him completely off meds!!!
Feeding-wise, though it’s not the BIG BIG news, we have two pieces of pretty big news: He is officially off all formula! I am blending real food for him every day, and it is going incredibly well. I love that we are preparing his gut for eventually eating orally by giving him actual food to nourish him. I am getting more and more comfortable putting together various blends and plan to start actually blending separate meals this weekend for him. Right now, I blend a daily blend that wouldn’t taste good … I want to continue moving toward as close to “normal” as possible. I have basic guidelines I follow of each food group and how much he should get daily, and I use an app to count calories. I also pay close attention to his fluid intake and am constantly working on being able to increase the volume he can handle. It’s been rather interesting, and I feel really good about it, since our reality is we still rely on the tube to get him the nutrition he needs.
The other big feeding news is he is officially off overnight feeds! I love not having to wake up in the middle of the night to turn off the pump! We generally give him some ripple milk (a milk alternative made from pea protein), coconut water, or water (depending on where we are with calorie/fluid needs for the day) before we go to bed, and that’s it! Again, I feel like we are finally able to start mimicking what it will be like when he eats orally, and that feels like a solid step in the right direction.
I did hear from Childserve today that they have a slot for us for the feeding clinic; at this point, we are just waiting for pre-approval from insurance. Once they get that piece in place, we will be able to start once-a-week feeding therapy. I am cautiously optimistic that this will help Kiran gain the skills he needs to eventually be tube-free. It’s going to be a longer and harder road than we ever imagined, but I am confident we are doing what we can to get there!
Kiran continues to just be the sweetest boy – and quite the chatterbox too! He has definitely started using a lot of consonant sounds in the last few weeks. “BA” is his favorite, but we hear some “MA” and “DA” and “GA” too! We love chatting with him and can’t wait for him to start using words so we know what’s going on in that cute little head of his! The day-to-day still gets overwhelming at times, but he is such a joy. I continue to be the luckiest mama in the whole wide world.