29 September 2012

Vacation- happy to get away

As anyone with a special needs kid knows, traveling is usually non existent or limited to rare times. It's difficult to say the least and at best it's a carnival side show fitting everything you need into your vehicle for your special one let alone the rest of the family members and their stuff. I almost love coming home because there is less stuff to pack into the truck! You also can quickly get off schedule while on vacation, can experience an exacerbation of your kids special problems, and you have to learn to be very flexible.

We have some amazing friends. Truly. God has blessed us with a couple who loves us for us, doesn't judge, and not only doesn't think twice about including us but they will go out of their way to love on us, especially Liam.
Liam was not happy.

We were fortunate enough to be able to carve out some precious days from our collective crazy schedules and head to the Smoky Mountains with them to stay in a cabin with a 180 degree view of the Smoky's.

Gorgeous view of the valley every morning from the cabin porch.

 What a great time we had! It was so good to get away.

We love to go hiking and Liam has gotten too big to be able to carry and hike like we used too. We did manage to use a Mobi Wrap for a little while and we were able to actually take his jogging stroller through some pretty rough terrain as well so it all ended up working out okay.

Liam actually really enjoyed our attempt at using the Mobi! Please don't follow the wrapping method pictured here. We know that's not how it's supposed to look.

New sport: Extreme Strolling

When we couldn't get the stroller through we would carry it over.  Liam loved that and would giggle like crazy every time.

The big kids are so good at helping out.

The whole goofy family.

Enjoying our gorgeous views.

Liam threw up more than usual and his feeding schedule got off, but who cares? We had a blast. What's a little puke when you get to have such a great time with great friends?

Liam actually ended up doing really well on the car trips too considering it was about 8 hours each way. And we drove the Cherohala Skyway and the Blue Ridge Parkway for extended lengths of time. This was the longest trip we've ever taken him on and he didn't fuss at all.

He is so good natured and such a trooper. We have been truly blessed.

28 September 2012

Hebrews 11:1

When you think about the human body, it is in the worst state ever as a collective than in all of time before. When God created us it was 'very good'. And then we screwed it all up cuz we humans are just so darn good at messing up. Disease, disorders, death. They all play a crucial role in our lives today and our DNA is so messed up this many years out from the fall that you can see the second law of thermodynamics in action. Order to disorder.

I am thrilled to see so much work being done on adult stem cells. Our fractured, finite bodies can't live like they used to, like they were originally meant to. Adult stem cells are turning the tide on how diseases and disorders are being treated and giving people and families hope.

My daughters unedited photo from the top of a mountain.

It is never too late to hope. And I will continue to hope for Liam that there will be healing for him through using his own stem cells.

This article in medical news today shows that a new procedure is available. It shows success in getting stem cells to the injuries in the brain with out direct injection into the brain (think of the Xcell Center in Germany who had a patient die this way then subsequently got shut down).

The place we want to go to in the Dominican Republic is doing this for select patients already. I don't know that Liam will qualify for it right now, but it gives me hope for Liam and kids like him; someday children will not have to suffer so tragically from the effects of TBI and CP.

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19 September 2012

Back to school

It's so hard to get back into the rhythm of blogging lately. So many things to say yet I can't seem to start a single thought anymore. So I just don't.

I guess I'll start simple today.

Liam is back in 'school'. We have a new speech teacher this year. I am always nervous about bringing in new staff. You never know if they are going to be a good fit and Liam is so complicated that it takes not only someone who is confident in their abilities but someone who is humble in spirit because Liam will get the best of you.

 We have the same itinerant preschool teacher and she has been wonderful. We've been really blessed to have her because she is energetic, forward thinking and positive. Liam just grins when I tell him she's coming.

Liam currently gets 3 hours of PT a week, 2 hours of OT, 1 1/2 hours of speech, and 2 hours of preschool with oversight of our vision teacher once a month. Those are either in our home or at our private clinic.

I'm thankful Liam loves to learn and really enjoys having therapy, for the most part, because we only have one day a week where we aren't seeing someone.

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