05 October 2015

Finally what seems to be an Answer.

I mean, would you want to sleep with that stupid thing around your neck??

Over a year ago, my sweet Liam started a new thing with his 'mouth'. While maddeningly frustrating for him and us, we chocked it up to it being one of Liam's newest stims (a behavior that is used to stimulate yourself in some way- honestly the best way to describe it) and waited for it to pass.

When Liam was just a wee thing he would chew on his inner right cheek. He did it for so long that he actually built up a callous in his cheek. After a year of that he moved on to sticking his tongue out and biting it. I have lots of cutesy pictures of him doing it. Then he moved on to sucking in his bottom lip and biting it. Lots of cutesy pics of that too. And then the newest one started. He would open his mouth, lock his jaw, and sound like he was choking. It's real cute let me tell you....

We thought this was another stage and it would pass but as the year, now year and a half, of doing it has rolled on with no end in site, it has had me asking questions to everyone in the medical world he sees. I mean, he will even do it if he wakes up at night! We first started out with OT who was working on oral motor issues with us. She had no idea what he was doing, is it on purpose? is it unintentional? is he doing it due to his CP? We worked at prompts to get him to stop when he started and let me tell you, he would work for Katie, cooperating like the cute little guy he is, but when he got home, nothing. He would actually gag on me if I tried the prompts. And you all know he can vomit at the drop of a hat if he gags from all of his years of experience.�� So I quit that super fast!
After that we had PT look at him. If you need a PT, this is the one. She knows her stuff, loves her kids, and kills herself weekly loving on babies to make their lives better. She had the same wonders we did about Liam's purpose in sucking in air and choking himself. She would do a move that would make him stop it instantly. But watching him do it with her made me realize something, Liam wasn't 'always' doing it on purpose. Then one day during therapy instead of stopping him, she let him go on and on and on. Over and over he would cock his jaw open and compress his airway, then inhale deeply, close his mouth, then start again. And she was at a loss.

We had an appointment for Liam's yearly pediatrician check up ( thank God my little medical conundrum is healthy and we only have to go once a year) and when I showed her, she'd never seen it before. Not surprising, Liam humbles everyone I tell ya.

The following week we had a highly anticipated visit with a specialist in Chapel Hill to speak with him about Liam's hips. When I told him why Liam was wearing a neck brace and what would happen if I took it off, he nodded his head. I knew then this appointment was going places. I took it off and Liam performed right on time. Choking and sputtering away.

I told him no one I had talked to knew what he was doing and was hoping he could help us. He asked a bunch of questions and that brought us to the real issue and a solution (hopefully). liam is not doing it on purpose. His dystonia is causing either his neck, his throat, his jaw, or his pallet to contract and making him do it over and over every day. He said he has seen kids with it and recommended us to an ENT in Chapel Hill that can help us further. He also suggested we try Liam on Baclofen. This is a drug I know much about from being in the CP community and one we have never needed for Liam because Liam isn't too spastic in his muscles.

While I am thrilled to have a cause, I admit I am not thrilled about Liam being on the medicine. It has to be taken 3 times a day because its effects wear off after 6 hours. We were to start this week with only one dose at night to get him used to it because it (can) makes them sleepy. I was worried about how sleepy it would make him and so far on day 3 he's not shown any side effects. So tomorrow I am adding in dose 2.

We are praying this medicine helps him. He is so frustrated with this jaw thing and to have a medicine help him stop doing it would be a game changer for him. He wouldn't have to wear the stupid neck brace all the time, he wouldn't cry at night because he's woken up and he's sputtering for air, and he could concentrate better in school. 
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20 August 2015

Summer is over

Has it been so many months since I've updated here? We have gotten into a lull, somewhat of a good, regular routine with Liam's needs this past year and I never seemed to have the energy to put into a post to update on life.

Summer is the hardest for me now. I love having wee man home but day after day can get boring  having no where to go and nothing to do. It is too hot here in the summer months to take Liam out anywhere. He can not stand heat and will cry within minutes of being out there. With little to do indoors around here and no handicapped van, getting him in and out of our truck to go shopping is a nightmare. So, we stay home and hibernate binge watching X Files on Netflix for most of the summer. I have the big kids watch him when I need to run necessary errands.

We had a lot of homework to get to over the summer and to be honest, I failed. Summer is hard. And Liam has some really bad traits/habits that are obnoxious and time consuming. Right now I just feel burned out on therapies. I feel like the first 3 years of Liam's life I spent being all of his therapists all the time and then the next 3 were spent trying to reduce my expectations and just be his mom. Really, it took me three years to get there. Letting go was hard and I spent years driving Liam an hour away two times a week for speech, PT, and OT. It wasn't until Liam started school in Kindergarten that I started to let go of being his mini therapist and try to focus on being more of a mom. For the first time in 6 years, I felt like I could breath. Obviously therapy is something that takes place daily in one aspect or another, but I am no longer stressing over where Liam is and that is a big deal for me.

I am looking forward to his second grade year. His teacher is awesome, we have our one to one aid back again, and Liam will be trialing an eye gaze device for communication. We had his second appointment today to work with him on the device and he focused on all the farm animals today where last time he only got two of them. He was excited to be using it and seemed pretty proud of himself when he made the videos come on.

 He will be using the device at school as well and I know he is excited to get back there and honestly, I am looking forward to having him get back to routine. He learns best that way and he enjoys school so much that it makes it easy to get hand him back to the system for a while.

Rosie cheeks from a few minutes in the sun.
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19 March 2015

Shriner's Visit I

Liam had an appointment with the Shriner's Hospital for Children down in Greenville, SC this week. The appointment was actually set up by our pediatrician who when seeing Liam for a yearly check up was disturbed by the scissoring he was doing and felt that it was to the point where it needed to be fully checked out. I asked if we could just go to Duke since Greenville is 6 hours away but she really wanted us to go down there for a consult. Liam did great for the drive because he laid in the back seat reclining on pillows the whole time.  Now before you get upset with me for not having him properly seated and buckled, let me tell you- He HATES his car seat. It does NOT provide proper positioning for long periods of time and he can't stand it. It would be different if we had a wheelchair accessible van because he would be able to be in his wheelchair, but for now, we do what we can do and that is make Liam comfy and happy.

So, after driving all that way we literally took a 30 second x-ray and spent ten minutes with the ortho. I was hoping for a lot more interaction with some people since we really don't have any oversight for Liam in regards to nuero, ortho's, specialists in rehab, etc... but that was all we got.

The Dr told me that Liam's left hip (which is his much shorter leg) has a misshapen socket and the ball of the joint is shifted down from the center. He said it will eventually come out of the socket some time in his teen years and we can do one of two things: Nothing-which means when it comes out we will be managing pain for him for the rest of his life (depending on how bothersome it is to him) or we could do surgery to fix it and he would work on his right hip as well even though it isn't nearly as bad as the left. The surgery would be a four hour procedure and would require hip casts for 6 weeks with an expected return to Liam's "normal" in about 8-9 months following that.

He saw Liam's breathing (his goofy, stubborn, horrific habit of locking his jaw and closing his airway) and was concerned that he might not even be a candidate for the surgery because of his 'airway' issues. Because after all, 1 in 20 of  'these kids' die during the procedure. Yes. He actually said that to me. Sigh.

I know surgery has risks. Like, duh. But his airway is not an issue. He would be completely sedated and intubated for the procedure so his concerns were not my concerns. I know my boy and his behavioral oral fixations isn't one that would give me pause when thinking about proceeding with this surgery. He has a bad habit. He doesn't have an airway or breathing issue.

I told him he's never sick, never been hospitalized for sickness and I wasn't concerned.

He did mention us seeing a full team to evaluate Liam and look at him with new eyes. We have scheduled an appointment in June (the earliest they had) to see a "Tone Specialist" who is supposedly very good at what she does. It will be very interesting to have her lay eyes on Liam and have a perspective from someone who works so often with kids of such a severe nature. Liam takes no meds for his condition and that usually shocks everyone (the looks of surprise always crack me up). We've never had a good Dr on board to help us with him. He still may not need any, but it will be nice to know that and not wonder if we shouldn't be trying something else.

So for now, we at least know more information about Liam's hips and we will hope to garner even more info in June.

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18 February 2015

Not that you do.

Just in case any one erred in judgment and thought we have it all together, I would like to take a moment and say that pretty IG photos and FB posts do not a clear picture make.

While yes, my life could be worse (you can say that to anyone - of course life can always get worse), we are absolutely and always grateful for what we live each day, but sometimes days with a multiply challenged child are tough and reality bites hard.

Cue the vomit.

And Liam's new horrible habit of locking his jaw and closing his airway. Gagging. Gasping for breath. Then doing it again 597 times before the day is done.

Now picture him doing that in the middle of the night.

Cue the picture of the sweet little family all with children your own kids ages...if they had lived. Cue the happy-go-lucky faces of said children who can pose and smile on cue, reminding you that your kid can't.

Some days, life is asking you to take a punch in the gut - again. That doesn't mean I hate it. On the contrary, I love my life and the priviledge it is to be the mom. But the daily grind of a challenged kiddo can be taxing and on those days I think I am grateful for the moments where I look like I have it all together. ;) I can pretend, right?