24 February 2017

Communication Update #1

So many changes for Liam this year in his communication. Exactly one year ago Liam got his first augmentative communication device. He got the Tobii Dynavoxx and uses his eyes to scan and make choices. We have wished for this for him for so long and it was definitely a gift to finally get it in hand.

Liam's speech therapist has been awesome. She gets frustrated with kids like Liam because she wishes she had been involved in their therapies before now. She wishes he had gotten the eye gaze years ago. Studies show that the earlier they get the device they better they do. Duh. 

I attempted years ago to get an eye gaze for Liam. We spent an hour with a rep talking about the devices available and attempted to get Liam to use it. The appointment ended with us being told Liam needed to know more verbs before using the device. Dumb. So dumb. How can you even carry on a conversation with out using verbs? I was frustrated.That speech therapist quit that week and we went with out until we finally got the one we have now. Did I tell you she's awesome? 

She has been so supportive. She saw right away that we could train Liam to use one. For Liam it isn't just about teaching him to use the device to communicate it is also training his eye muscles. His cerebral palsy affects his eyes. It can make them tire out quicker and the weak muscles have a harder time staying focused. 

The eye gaze has a lot of activities that Liam can utilize such as games, books, etc. and we can create pages as we go. He does a great job of telling his therapist Hi and Bye appropriately. :) She also sees when he chooses not to participate and he gets in trouble. I think that's a great thing! 

 We've also implemented using a PODD for quicker home access and communication. I'll explain more on that in another post but using two forms of communication, obviously along with speaking to him, are really helping his communication emerge. I'm amazed at some of the things he says while at school and love hearing how supportive his teacher and one to one are with trying to reach my wee man.

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27 October 2016

What is the deal

So google changed my ability to keep my blog name. I have to pay to have a google account just to pay to keep my website name. So, in the process of the craziness this school year I haven't actively pursued getting it done. So now, here I am, trying to figure out what to do and how to do it, meanwhile my old address at j-ustm-e.com shows as invalid. I have so many updates I need to make so if you are still here, please bear with me. 🙏🏻
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17 March 2016

Surgery #7- Hips and legs

Tuesday Liam went into UNC Children's Hospital for a realignment. He had a femoral and pelvic osteotomy, tendon lengthening in both legs, and a hamstring lengthening in one leg. The surgery took right wround four hours but from the time they took him back until we saw him was almost 7 hours. He was preetty much completely out of it during the first day and adapted well to coming out of the surgery.

We knew what to expect when we saw him but it was still quite a shock to see his legs casted so far apart. We were told he would have a 12" bar between his legs but it's ove 14" wide itself along with the deoth of the casts so his legs are really 16" apart.

The Dr was happy we went ahead and did the procedure now beccause his left hip was almost out of socket. That shift wore down the side of his hip and reshaped his femur. The Dr shaved down and reformed his left femur and using the piece he shaved off, they bolted it to his hip lengthening the hip back to a normal shape. He didn't need to use cadaver bone so that was good. Liam's right hip needed minimal reshaping but hewanted to do it while they had him under. They then cuts his tendons to lenghten them, these are what pulled his hip so far out of alignment and then he cut into his hamstrings to lengthen these as well due to the new length of his legs. 

Liam's blood clotting factor was low and in order to remove his epidural they needed it in normal limits. In order to do that he got a transfusion of plasma today. Once that was in they took the epidural out. All pain management is now done through oral meds. We are trying to get them at a level that keeps him as pain free as possible but so far today that has been very difficult. If he wakes he cries in pain so he tries to stay asleep.

It has been pretty rough today. Not only does he have discomfort from the surgery he has his legs weighted down with casts and he is currently stuck in pretty much the same position all day long. The swelling on his thighs and the bruising have diminished some and we have lidocain patches on them to try and help just that little bit more. 

I am hoping tomorrow he is a bit better and the pain is more manageable. I miss his silly smiles. We were supposed to be discharged tomorrow but with hiis level of pain we will be here at least one more day.

P.S. UNC has been awesome to us. Every single person we have met has been attentive and helpful with Liam. We have had a team of people in and out of his room every day checking on us and caring for him. Liam's had a pain management team, the surgeon, resident surgeon, nurses, OT, PT, a teacher, case manager, anesthesiologist,  etc... And I have nothing but great things to say about all of them and our experience here.

17 February 2016

Sleep study done

Liam had a sleep study recently that we are still awaiting results on. But you know your kiddo has a sleep problem when you get there for check in at 5:30 pm and he doesn't fall asleep until 4:30 am. 😳 I couldn't believe he lasted that long. He has never stayed awake that long before, 2:30 sure, but 4:30? I can't believe how well he can get by with so little sleep. I did feel very blessed in that with all those wires on his body and head, he was a happy guy the whole time. He didn't fuss one bit. And with everything he had on him I was surprised he did so well. We have to see his ENT in Chapel Hill next month to get the results, but I did walk away thinking that it was probably a good idea we went ahead with the study. Because they wired up everything, his chin and jaw were a part of the data and while we were there he did his weird jaw thing. So I am hoping that will be able to give the ENT some solid info on what he is doing so she can figure out how to help him with it. Now our next step is crossing off pulmonology.

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