Well been a long time since I wrote on here. Life has been chaotic, between work and school for both me and Billy and taking care of Lil Bill we do not have much time to ourselves these days. And when we do, we do laundry or dishes, ha the joys of parenthood!
It has been a very tough couple months for Lil Bill. He has been sick with respiratory illnesses more than he has been well. For the past couple months he spends about two weeks sick at a time, then a couple days feeling well, then sick again. However he has only had to be hospitalized once and only required a little bit of oxygen. So for someone with chronic lung diseases and multiple airway diseases that is pretty good! Because of his airway diseases, he will go from not coughing at all to coughing uncontrollably and wheezy within hours. We have several breathing treatments to use with him for when this happens. We have found, that those breathing treatments do not have anything on a steamy room. The steam really clears up that mucus!
That one hospitalization did end with us getting all of our old medical equipment back at home with us. We now have the oxygen concentrater again, a bunch of oxygen tanks, the pulse ox monitor, and a suction machine. I do have to give it up for the suction machine. It works so well and Lil Bill feels so much better after. I have concluded that every baby should be born with a suction machine. Those little suction bulbs just are not that great.
They sent us home with all the equipment so if Lil Bill gets sick enough again and just needs a little bit of extra support, then we can do it here rather than have him hospitalized. We have not needed it yet, so I hope just having it here wards off bad spirits! I just cannot wait for this flu season to be over. When Lil Bill came home from the NICU last year it was January, and we did not leave the house until April for anything other than doctor appointments. And it worked, he never even caught one cold. But we couldn't keep him in a bubble anymore. I think him being in the medical day care he is in, being around so many other kids does not help in that aspect. Home care nursing was mentioned to us as an alternative to the daycare. I could never take him out of there. Nothing comes close to warming my heart as much as walking in and seeing him playing with other kids his age, actually laughing and engaging with them, with a huge big smile on his face. Unlike his momma, Lil Bill is a social butterfly, he loves interacting with kids his age. I couldn't take him away from that.
Today, Lil Bill was fitted for different adaptable equipment. He was fitted for a stander, a feeding and activity chair, a bathing chair, and a wheelchair stroller. I could not help but to feel a little sad about it. All this equipment to help him be able to do things that most of us do without even thinking about. I am trying to be excited about it, I know it will only help all of our lives be easier. I just have to come to acceptance about it. Our life is not typical, but it is ours. Lil Bill handles everything so gracefully and doesn't seem bothered by all of the hurdles he goes through everyday, so why should I?
So, on the topic of hurdles, we also met with a speech therapist at the hospital today who is part of the cochlear implant team. She gave us an idea of what the therapy will be if we do go through with the cochlear implants. See, the cochlear implants are not just a quick fix. It is not like turning on a light switch and having it go from dark to light and everything is all good. The cochlear implants are only successful when followed by intense therapy. She said the first year is critical, and we will be going there for therapy at least twice a week. She said she recommends Billy and I alternate who takes him. So that way we are both learning about the therapy and will know how to practice it at home. The therapy will have to become just a part of our lives at home. It has to be consistent and the whole process is a big commitment. The therapy is audio visual therapy. Since Lil Bill has hearing loss and a hearing disorder, he relies very much on his visual sense. This therapy helps him rely on his hearing, helps him realize he does hear, helps him process it, and embrace it. An example of how this is done is covering your mouth when you are talking to him and trying to get him to make the same sounds or words are you make. The therapist used this analogy: When someone breaks their arm and the arm is in a cast for months, they then go to therapy to strengthen the arm that was in the cast, not the arm that has been free. This is basically what the therapy does. Think of the hearing as the arm in the cast and the vision as the arm that has been free.
We have decided we are going to go with the implants, if appropriate. It is recommended by the professionals that he gets them, but he has to go through a series of MRIs and other tests to make sure everything is ok physically to get them. For example, if his auditory nerve is too close to his facial nerve it will not be recommended he get them. Our ultimate goal is for Lil Bill to communicate verbally. We are well aware that he has other issues that may get in the way of that such as left vocal cord paralysis and CP. With his type of CP he is super tight everywhere except along the neck muscles. If Lil Bill cannot talk verbally, at least he will be able to hear more than he is hearing now. The speech therapist told us about a girl who has several cognitive and physical limitations. She said she got the implants and laughs at the sounds and noises she hears. She gets excitement from them, even if she doesn't understand them. So even if all this procedure does is enhance Lil Bill's life with excitement, then that is still better than not doing it.
On a lighter note, Lil Bill has been ranging from 18-19 pounds 15 ounces since September. Since he has been so sick for so long, and he always coughs so hard he throws up when he gets sick, weight gain has become an issue. Well today he was weighed at daycare and I am happy to report Lil Bill is over 20 pounds finally!! 20.004 pounds. He was recently put on a diet to gain weight and has not been sick in a little over a week, besides a 24 hour stomach bug this weekend, so hopefully he will start growing again! Back in September they wanted his weight gain to slow down, it slowed down too much, now they want it to speed back up. Lil Bill's body is trying to keep up with the different things the doctors want it to do.
No comments:
Post a Comment