Today has been a mentally draining day. Nothing completely crazy happened. I feel like sometimes issues with Lil Bill happen so quick and I do not have time to process any of them before the next when pops up. So I guess you could say today was a processing day. Emotionally and mentally draining!
A lot happened this past week. We had physical therapy and occupational therapy like we do every week. Lil Bill has been really showing some progress. His therapists have been really pleased with his head control. He still can not control it completely but his progress is obvious. He also has finally figured out more about his hands, he enjoys punches toys with them and sometimes grabbing. It was a good week as far as the therapies go.
We had a follow up meeting with our child development worker, the Brandywine School District, and statewide services for the deaf and hard of hearing. We came up with a new Individualized Family Service Plan (IFSP) for Lil Bill. They handed us papers about Special Education, which hits me with a blow. But I try to keep an open mind that everything they are doing is to help Lil Bill reach his full potential, which as parents me and Billy completely support and want so if it is what is going to help him for now, then it is what it is. So to get the services from the statewide services of the deaf and hard of hearing we have to enroll Lil Bill in the school district. Not even 1 year old and already getting enrolled in school, what the heck!?
We also saw the pulmonologist this past week. We discussed Lil Bill's sleep study and his results show severe sleep apnea. So what does this mean? It shows that he consistently stops breathing during his sleep, I think the total times an hour were 24.1. From my understanding for them to intervene with C PAP the total times have to be over 24. That is just our luck huh, to be over by .1! They are not long periods, and his stats stay up which is great. So we are trading in our oxygen concentrator and oxygen tanks for a CPAP machine! I guess that's good news and bad news, we can get rid of some of our equipment while adding something new. Which seems to be the way Lil Bill likes to do things. As soon as he gets through needing some kind of support another one pops up that he needs, I used to joke that we would be OK unless it all started happening at once. Thankfully it has not all started happening at once yet.
So we do not know if he will out grow this or not. Both ENT and his pulmonologist both said that the only other way to help him right now would be putting him on a trach. But they also said he is not at the point that they would even consider it at all, so that is good news. So hopefully the C PAP will be coming this week and we have to get another sleep study in a month or so to make sure the C PAP is doing its job.
We saw a new G.I. doctor as well this week. We go to them for Lil Bill's re flux, constipation, and they are now making decisions with his feeding tube. We were really hoping to get off continuous feeds. The 18 hour continuous feeds are very difficult for everyone involved. I feel like since they started I have lived my life in 18 hour increments and 6 hour increments. That is just how my days get planned out in my mind. Well unfortunately we did not get off that schedule, but fortunately we did get to pull the NJ tube out and put in in a NG tube, which really is a huge step! So in a couple days if Lil Bill is tolerating his feeds we can switch it to two 7 hour feeds, then keep weaning til we get to bolus feeds (or every three hours). It has been three days now since we started using the NG tube again and he is doing great with it! We can still feed him the purees and bottles by mouth when he is awake and alert and not being fed through the tube. He is still loving them!
We also got the O.K. to let him taste some cake on his birthday! I was really happy. It was actually one of the first things I thought about when they initially put him on the feeding tube. As silly as it may sound. I just feel as though the normalcy of baby hood as been robbed from us and Lil Bill, and I have been to so many birthdays for 1 year olds with cake all over their faces and I was sad that that may be something else we may miss out on. But NOPE! He can taste some. Now I will have to really get to planning his first birthday! It has really crept up on us. We always have so much stuff going on that I kind of even haven't gotten around to planning much of his birthday, that's so bad huh? But the next two weeks as of right now we only have two appointments each week which will give me plenty of time to plan! 8/31 will be here before I know it.
So today Lil Bill pulled out his NG tube, I had to retape it twice, I can not wait til it is completely gone! He also kinda scared me today. He has laryngomalacia and tracheomalacia, they are airway issues, so sometimes when he cries he stops breathing, his larynx basically collapses on his airway. It usually only lasts a couple seconds. Today it happened twice, and it lasted almost 30 seconds each time. He started crying when I took the bottle away from him and it is like he just froze while crying and stopped breathing and started turning purple. Wow it just hit me that I started this post saying nothing too crazy happened today. See what I mean about losing the normalcy of baby hood! When my baby turns purple it isn't a big deal! Its just all about our 'new normal.' Glad I am able to share some of our 'new normal' life with you!
Our boy is a little trooper, and so are we, and so are our families that help us out so much! People often ask me how I get by. I do not know the answer to that question, but I do know without both mine and Billy's family helping us out and supporting us, as well as some close friends, we wouldn't be getting by as gracefully! (wait are yoga pants considered graceful cause thats all I wear? ;))
No comments:
Post a Comment