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. ❤

24 December 2014

Merry Christmas!

Liam wants to wish you all a very merry Christmas! And tell you he's lost another tooth! He's looking very snaggly with only one permanent replacing the 5 he's lost so far this year.


We bucked tradition this year and instead of presents we gifted each other our presence. 

We took off with the kids to our favorite destination, the mountains, to experience some firsts: tubing, skiing, and snowboarding!


The kids have enjoyed it so much and wish we had done this years ago. 


Even  though Liam hates to travel (we laid him across Mimi's lap for half the car trip) and dislikes change, he's done really well. 


We got to cut down our very first real Christmas tree!


We are ridiculously grateful for the blessings we have been given this year.  It is not easy traveling with a significantly disabled young one: sleep is minimal, diaper rashes from long car trips, vomiting when he's nervous, afraid he feels left out when we take off to do the things he can't...but no matter the trouble, Liam's worth the trouble and we are grateful for every family moment when our kids are always headed in different directions these days. It's tough to find time to get us all together in one place and with Rylie transferring colleges to one quite some distance from us this next year we are cherishing and enjoying this Christmas. Much love from our family to yours.  ❤️