Well things have been very hectic lately. I wanted to update sooner about Lil Bill's progress with the audio visual therapy and the implants, but better late than never.
Lil Bill is doing SO amazing in therapy. His audio visual (AV) therapist said he is doing unusually good and they do not expect any kids, with or without any other limitations, to do what he is doing this early on. She has been so encouraging for us. She brags so much to everyone we see when we are with her how smart Lil Bill is. She is opening up so many doors for us.
She is interested in trying Lil Bill with an eye gaze machine. An eye gaze machine is a communication device that will allow Lil Bill to communicate his wants, needs, etc. I honestly am not 100 percent sure how it exactly works. What I do know is somehow it reads what Lil Bill is looking at and says what he is looking at. It is a computer with a screen. Initially it will start out with pictures, than simple phrases, and then can get very detailed. I saw some pictures on the internet of key boards and people can just 'type' out complete sentences and so on. Pretty amazing technology I will have to admit. The therapist brought in another therapist from the communication device team into one of our sessions to get her opinion. That therapist agreed that Lil Bill is extremely bright and would totally benefit from this. The AV therapist spoke with a couple over professionals who are familiar with Lil Bill and with me and Billy and we all have agreed to go for it and give it a try.
On one hand I am a little disappointed. Getting my precious baby boy an eye gaze machine to communicate because he can't talk yet? Are we giving up on him? It makes me so sad. However I went through this same mindset when we got him a stander, and a wheelchair stroller, a bathing chair, and a feeding and activity chair. All of these items have dramatically increased his quality of life. He loves them!!! I guess it is normal to grieve. Lil Bill's childhood is turning out to not be typical. Just like his birth, just like his infancy, just like everything else that led him up to where he currently is. But he goes through it with such grace. He is so happy. We were at the hospital today for a sick appointment (he got sent home sick from daycare) and the nurse asked if he was always so happy. The answer is yes! (Unless he is sleeping, then he screams literally the entire night, but that is a completely different story) So I try to listen to the other side of my brain when it comes to my perspective of this eye gaze machine. That we are giving my son the opportunity to communicate. Communication is essential to quality life. With all his limitations he has already found ways to communicate! He is dying to let the world know what is going through his head. He cannot talk but he has so much to say. Can you imagine how that feels?? This device would probably overjoy him! And the AV therapist assured me that no one is giving up on the hope that he will verbally communicate one day. She said that why should his communication skills stop developing while his language skills are trying to catch up. And that made alot of sense to me.
I read a book called Out of My Mind by Sharon Draper. It was the first book that I had finished in years. I cried so many times while reading this book. It made me laugh, it broke my heart, and it gave me a better understanding overall. It is about a girl that is about a preteen's age. She has Cerebral Palsy just like Lil Bill and she can not talk. She finally got a communication device that allowed her to talk, she triggered it with her thumb. She finally got a chance to voice her thoughts, opinions, feelings, and beliefs. And she got a chance to show everyone how smart she was. Just because a person if physically limited, does NOT mean they are cognitively limited. I fear that this misunderstanding will cause Lil Bill to have many struggles. While I am here I will not stop advocating for him no matter how hard it gets. I can not wait until my baby boy can call me mommy. Whether he says it out loud, signs it, triggers a machine with his thumb, or with his eye. I am 100 percent sure it will happen. And I am sure I will cry the first time and then become overjoyed with gratitude. Yes I am positive this will happen!! Anyway it is a good book. I recommend anyone and everyone to read it.
We also had an appointment with pulmonology last week. Lil Bill has been doing so well respiratory wise I couldn't wait for his pulmonologist to see it. Since he is currently doing so well, his pulmonologist thought it would be a good idea to talk about the possibility of Lil Bill needing a trach in the future and for him to set up a meeting with us, him, and the hospital's palliative care team. Of course I could not believe this conversation was happening! Lil Bill has been doing so well lately. The doctor assured me that palliative care does not mean what it used to (end of life care). After speaking with other people and using good old Google I can concluded that he is right. It does not mean what is used to. It is now more supportive services. If we are admitted to the hospital, they would be involved in our care. If we have any questions, equipment needs, etc. they would be there to help. If the time came to make a decision about a trach they would be walking us through it. The pulmonoligst said that it is better to meet them when Lil Bill is doing well as opposed to meeting them when we are in a crisis situation. After doing some thinking I suppose he is right. Just when I think we are doing so great I get a reality check that there could be another time in the future that we are not. Ugh.
And now Lil Bill is sick again. Has been throwing up non stop for at least a week, getting more and worse over the last couple days. He spiked a fever of 102 today and has lots of congestion. He has some other issues going on. He is severely backed up (if you know what I mean) and we will be in day medicine at the hospital for a good 10 hours on Monday to fix this problem (hoping for a very crappy day ;) ) So primary care told us to touch base with them Monday if he is still throwing up after all is said and done and if so then they will run other tests. In the meantime they gave us meds to use this weekend to give this a jump start.
Yanno...no one could have ever ever ever prepared me for motherhood. No one could have ever prepared me for all these doctors appointments, surgeries, getting puked, peed, and pooped on, and sleepless nights every single night for at least a year now. And I do not care what anyone says, you do not get used to no sleep. I feel like the people who say that you get used to it, are the people who are sleep deprived for like 2 or 3 months while their baby is a new born. Not the ones who are up every night most of the night with their screaming toddler. I am hoping this clean out will help with that too, otherwise we are off to diagnostics to figure this out!! While no one could have ever prepared me for this stuff, no one could have ever prepared me for the unconditional love I would have through out it all..to not mind, to show up for all of it because I want to. There is no greater love than the love I have for my child. Our story is not typical but it is ours and it is beautiful. Lil Bill has a wild personality already, and I cannot wait to see the young boy he turns into.
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