Saturday, March 7, 2015

wishing the groundhog could have a do over...

There are so many things to write about, that it's all a mish mash of spahgetti like thoughts twirling around in my head.  I really have no idea how to get it all down in blog form in an interesting way.   Writers block has been my companion recently.  I've had the urge to write...but the words have not flowed. So to encourage you to read, the bribery photos are at the end of the post today...

I think the writing cells in my brain have frozen because of our long, cold, shivery, you've got to be kidding me more snow, type of winter we've had here.

This mom is praying for the thaw, praying for the spring breeze, for the green to pop up through the white, to see my first spring buds...   This mom can't wait for the back yard to be open for service!

Many things are in that stage for us right now... about to happen, almost here, but not quite yet. Dan's book is almost published.  The artist previously known as shirtless Santa / bouncer / butler will be getting a moment of face time on GMA.  I have to be creative and find a way to ensure my monday morning patient just happens to be watching TV at that moment... hint hint if anyone can record this.

CSE meetings are about to happen...nervous, and relaxed about this all at the same time.  Shea's nearing the end of second grade and will be moving to a new building next year.  I'm especially anxious for Spring to come for my danielle...she has decided movies are her favorite past time and turning the television off as we strive to do can send her into quite the tizzy.  She wanders the house like our shadow when the boob tube is banished.  I would love to find her a hobby that she would spend time attending to.... whoever suggests the winning idea will be rewarded well.

Simon has adopted a practice of sneaking into our bed almost every night...he is sprouting up... and continues to be sneaky about how much intelligence he has in that noggin of his.  He is my lover boy, unexpectedly planting a wet one on my face, or patting my head and and cuddling up.  Actually all of my children are cuddlers.... that's a bonus i can always look forward to at the end of a cold, exhausting day.

It's been a year now since Dan's father passed away as well.  Not too many days ever pass without little miss emily talking about "my grandpa in heaven".  Our emily is growing quickly, learning words and concepts that leave me forgetting she's only 3 old!  This little lady is certainly her father's daughter. She currently composes musical numbers and choreographs dance routines on a daily basis. Emily also makes sure she doesn't get lost in the shuffle in many endearing ways and also in some "not so endearing" ways too.  She is a 3 year old curly headed joy, and a practice in patience each day.

Also with the positive type of anticipation of spring time comes a nervous / "lets get this done and over with" kind of anticipation for Shea's immediate future.  Soon we will be assigned his surgery date.  A few more lab tests are to be run this week to make sure his nutrician is in tip top shape so that his bones can heal well after the surgery is completed.  We unexpectedly and suddenly discovered a severe spinal curvature and kyphosis that is causing him some discomfort.  The bigger problem is that we found a handful of his thoracic vertebrae are deformed, and one in particular is causing big issues. This problematic vertebrae had been "holding it's own" so to speak when shea was smaller, but now that he's growing this section can't do it's job anymore and is allowing a collapse of sorts above it.  We need to protect the spinal cord which is currently herniating out of the spinal canal.

 His spinal cord is not "sick" up in this region yet, but it would be risky not to take care of this issue.  He does have quite a bit of hip movement that helps him to be mobile and function... if the spinal cord began to "get sick" in this higher region, shea could loose those abilities.  This problematic vertebrae will be removed, and then the segments above and below will be fused.  In the long run he shouldn't have any permanent loss of function or restrictions... but he will need to wear a
back brace for 3 months post op and will have lots of restriction during this time frame.  Prayers would be appreciated for our guy.  Not just prayers for the surgery and the recovery and his protection...but prayers for his spirit, his attitude and his outlook on life.  This kid has faced more in his 8 years than many full grown adults will face in their whole life.. he's a fighter, but you can see lately it's all taking a toll on his spirit.  Shea needs spring to come too!

Signing off for now.  We appreciate you taking the time to read our updates... and hope that spring will come for all of you very soon as well.

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