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?

07 February 2015

Best $35 ever.

I happened across this really cool head rest while on facebook recently. It's original intent was for keeping kids from collapsing into a ball while sleeping in their car seat. But the momma who designed these has had special needs parents, like me, asking her to make one for them due to their little ones lack of head control.

While the headrest isn't perfect, because nothing involving Liam ever is, it has been a huge help keeping Liam positioned in his car seat. I'm usually having to reach back while I'm driving to help reposition him but when he has this support on he sits pretty well and I can focus on driving!😨

He didn't like it at first because we all know Liam doesn't like changes. And to him this was a big one. It took him a few days to get used to it.

Sherri is the momma who started making the Sleepy Time Headrest and she personally called me to talk to me about making one for Liam. She was more worried about making sure it worked for us than she was about selling her product. 

You can check them out on facebook or visit Sleepy Time Headrest to learn more. It velcros closed under the chin and with Liam being such an avid thruster,  I was concerned it wouldn't hold but it's done a great job and hasn't broken loose once. It's even been crash tested!

It's not usual to find a product for special needs kids that is this affordable!

Traveling with Liam is hard and until we can get a handicapped van, I'm thrilled to have something to keep us going with the vehicle we have. ❤