So whats been going on with Lil Bill? Well lets start with good news first, its been two weeks without a feeding tube!! I still am not fully accepting its gone out of fear it will be back, but either way, this is a huge milestone for him and the longest time without an NG tube since March! Hes been doing very well, his speech therapy (who also works on feeding) helped so much and so quick. Although I think we needed some of the therapy for ourselves too because we had so much anxiety about feeding him, so just like him we also needed a push. He's doing great with taking everything by mouth. He takes his formula and purees. He is still around 20 pounds. He was put on a diet recently because he was growing in weight much faster than he was growing in length, so the diet seems to be doing its job. Heres a picture of him with no tube!! Its so weird (but amazing) to see him without a feeding tube all the time!
He also started at a medical day care a couple weeks ago. We are still adjusting to that. Its a great place and I am so glad its so close and he gets all his therapies there now, which is good and bad. I enjoyed seeing and being a part of his therapies and knowing his therapists but it does cut 3 appointments out of our weekly schedule and I think he gets some of them more than once a week so that's a good thing.
Lil Bill has been battling a viral infection for a couple weeks. He gets breathing treatments at home, one twice a day (that will be even after his viral infection is gone) and the other just as needed. He seems to be doing better. We saw his pulmonologist yesterday and he explained that any cold will be more dramatic in Lil Bill because of his airway issues (tracheomalacia and laryngomalacia). Which explains why he went from not coughing at all to coughing uncontrollably within 24 hours. This is our first flu/rsv season not completely in the hospital so it is a little nerve racking. I am sure this is the first viral infection of the season, with more to follow (i hope not but I am just being realistic with myself) but we have avoided going impatient so far with it so thats a great sign.
His pulmonologist also mentioned a trach. He is not recommending it right now but that would be our next thing to talk about if the air way issues cause more problems and if his carbon dioxide levels remain high. I am trying not to even think about it yet because its not what he is recommending right now. After he said that I didn't really say anything in the appointment (and ask Billy that is so unlike me). I suppose I was a little surprised. After all, I think the possibility of a trach was behind us. But we will cross that bridge when we get to it. He is going to be following us every month during the flu and rsv season.
We also got the results of Lil Bill's second sleep study. The results showed that they need to raise the settings on his cpap from 4 to 8. Even at 8 he still has 3 episodes of sleep apnea. We are really trying to make this CPAP work but its been hell. Lil Bill hates it and screams the whole night, even when we take it off now. The doctors keep saying only time will help. In the meantime I will keep keeping my local Dunkin Donuts open because of lack of sleep!
Lil Bill also had his hearing aids turned up a couple weeks ago. I actually think its making a difference. He seems to respond to more noises. His responses are in his own way, his eyes get bigger, or he flings his head or tenses up. I feel like I finally have time to focus on his hearing loss and disorder. So far its been one thing after the other and I have not really had time to process it. His lasts tests showed that sound waves do make it to the brain, though they are delayed getting there. In a typical hearing person, sound waves get to the brain in 50 mili seconds, Lil Bill's sound waves get to his brain in 250 mili seconds. This could be because of his auditory neuropathy disorder or because of his delays in general. Either way it is what it is. So we are trying to talk a little slower, in case he is hearing us, we do not want it to overlap! Can't do that especially with my singing of made up songs to him!
I never really explained his hearing disorder on here. It is a auditory neuropathy spectrum disorder. Basically, it is like a staticy radio. Some things get through and some things don't. There are varying degrees of the disorder and we do not know how mild or severe his is yet. Its basically an electrical problem with the auditory nerve. I actually have a simulation of it that I was given by one of his doctors. Here it is. It starts with the most profound, than severe and to moderate, mild, and normal.
I almost cried when I heard that. So we do not know where he falls. From my knowledge, the cochlear implants help more than hearing aids with this disorder. We are still in our hearing aid trial so that will be another bridge we cross when we get there.
Motor skills wise, Billy has started to really enjoy jumping and walking. He can't hold his head or upper body up, but if you support his trunk and up, he will take steps and jump. He thinks its funny and he gets such a proud look on his face when he does it. He is doing better with tummy time, and still making small progress with head control however we are not there yet.
Oh and he does have three teeth now! :-) AND :-( my baby is growing up!
I am going to try to update this more. I am sure I left some things out that have happened within the last month to two months. But those are the highlights that I remember!