Thursday, December 13, 2012

On the Road Again.

December 13, 2012
Off to Indianapolis once again, and positive thoughts are appreciated, as these trips are never my favorite. It starts with an early morning, traveling with our lil' man takes a trip that should only take about 3 1/2-4 hours actually last about 5 hours or longer. He really is a good car baby, but timing of feedings, diapers, and Mommy and Daddy breaks never seem to line up. So off we will go. Coffee is a MUST!! I am particularly not looking forward to tomorrow due to the MRI.  Its only routine, and is a fast spin MRI so they shouldn't have to give him any sedation but when it comes to Blake's brain bleed I just always have a hard time. This MRI is not to diagnosis anything it is strictly to get a baseline picture of what Blake's brain looks like healthy with the shunt working properly. So really no worries, just never like to see my lil' man posted up getting a procedure done, it brings back too many bad memories, but I am sure all will go well, unless Blake's teeth start hurting him like they did this morning. So as you all know (unless you missed the last post BIG STEP) Blake is sleeping in his crib in his nursery now a days, and this week has been wonderful he quite enjoys it and I think sleeps better now then he did in Zach and my room....with the exception of today. This morning at 6am poor guy let out a mind blowing cry that scared the holy bajeebies out of me. I ran in the nursery and tried to comfort him with little success.

We rocked...Didn't help.
We changed his diaper...Didn't help.
We thought he was maybe hungry so Zach made a bottle quickly while I rocked him...Didn't help.
We tried a cold teething ring...and Voila!! 10 seconds or pure silence!!

So we went from there. A dose of Tylenol, some Orajel, and a teething tablet and finally our little man settled down and fell fast back to sleep!
So we will load up on the Orajel, and pack up the Tylenol, cross our fingers and hope for the best!
After the Fast Spin MRI we will be seen by his neurologist Dr. Ackerman to review the results, and check on Blake's progress. We have a few things to review with her, one including his right side of his head. The poor guy has slightly flattened out his right side of his head by refusing at night to rotate despite Zach and my effort!!! Once your child has great head control unless someone is awake 24 hours a day to help turn it has been nearly impossible to keep him off his right side. The fix to this? Sometimes it is possible for the head to even out but if it is bad enough to be considered plagiocephaly we want to fix it sooner rather than later because of Blake's shunt, and its a simple as Blake having to wear a cranial helmet for a while to help mold his head. So that verdict will be made this week. Also last week in PT and this week in OT it was recommended that we might possibly start restraint therapy. What is restraint therapy? Often it is used in stroke victims (which effects are pretty similar to Blake's IVH) when one side seems more affected than the other. Our problem? Blake would much rather use his right arm than his left- YES I know everyone chooses one side over the other but this is different. Blake can use his left arm and hand but it seems more stiff, and the muscles are tight. He will at times bat at his toys with his left hand but will often just let it lay flat as he will stretch with his right so he doesn't have to use that left arm. So we work in PT/OT with using his left arm and they have recommended that we start using restraint therapy- where for 2 hours a day we will ace bandage his right arm to his body so he will be forced to use his left arm only...yes I know this sounds cruel but we believe it is best to start now rather than wait until he is older. We are going to do whatever is best for him and gives him the best chance at being able to do whatever he wants to in life, so we are going to see what Dr. Ackerman's thoughts are and if she has any suggestions. SO WISH US LUCK. Like I said not my favorite type of appointments, but I know when his neurologist sees him she is going to be shocked at how much he has grown since the last appointment back on Sept 7th, when he was a little over 7 lbs! We can't wait to show all the progress we have made and only hope to bring back a good report! I will try to update you this weekend!!

Blake playing with the Caterpillar if you see though, with his LEFT hand!!! YAY!

Sitting like a big boy in his bumbo. 

My favorite snuggler. 

Now for a flashback...

This is how much room he used to take up on the couch this picture was from September 11th, 2012 and now compared to....
Picture taken December 9th, 2012
My big boy!! 

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