Welcome!! Grab a cup of coffee and visit with us! We hope you enjoy our story! (((HUGS)))

Welcome!! Grab a cup of coffee and visit with us! We hope you enjoy our story! (((HUGS)))
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Wednesday, October 31, 2012

31 for 21...........phew! I did it!

Oh! boy! This was a CHALLENGE!! I had 2 late posts, and 29 on time. phew!!

And then this morning I see a precious Sister commenting if I can continue to post daily!! ROTFLOL!!

Seriously?? LOL!!

I think I'm taking "31 days off for 21" now!
O.K. I'm kidding! :o)
But I'm tired! Each day flies by so quickly, it's hard to get the time.

Today was Jacob's Neurologist visit~
I'm going to copy and paste you what I wrote a Dear Sister in Christ because I'm too tired to type it again. :o) (I did edit a little! ;o)
Spell check died on this post (computers!), so please excuse any typos!

First the Dr has no idea why they operated.

He said pressure (fluid) can build up from the cysts, but he does not know if that was what they did? (release the pressure) He can't "see" evidence of anything having been done. He did say that in the medical file from BG, that at 4 months old, a CAT scan was done; because the procedure they describe sounds like a CAT scan. But it sounds like it was done for vision. He thinks it was just done to "see" and maybe then they saw the cysts? But then if they operated, why are they still there? He has no idea.

He says we will do a 2 minute MRI next year to check them. We will watch them. He said to watch for swallowing difficulties and physical changes as a sign of pressure (fluid) build up, but that the fluid builds up slowly so we'd probably not even see if it is building up until next year. Or maybe not even until the next year. We know that Pl*v*n would never notice a child eating or not eating with swallowing issues, or physical changes, because so many children there eat that way already! So why the operation?

He has no idea why Jacob's feet flop and point down. He does not know why his left leg and right arm are weak. He does not know why his left leg turns in when relaxed. He really was no help with our physical questions. He was pretty vague. :o( 
So we will see our mobility specialist (Dr) next. :o)

The radiologist report said- "There is an arachnoid cyst in the posterior fossa in the midline which measures approximately 3.9 x 2.8 x 5.5 cm in diameter. Benign appearing." They gave us a really neat info sheet on Arachnoid cysts. It didn't explain anything about physical weakness.

The neuro also said his Cerebellum is smaller than normal and that could explain some of his physical delays. I googled it and found it could also indicate another syndrome in the Ataxia family. That was a little frightening because our daughter Molly passed away at age 27 from a severe genetic form of Ataxia. We don't know if Jacob's weakness/floppiness is possibly Ataxia too.

I still think his head bothers him from the surgery. I may be crazy, but as a mom, I really feel he's still heavily dealing with healing from whatever happened to him. Pl*v*n said he cried without reason. I think he has a reason, his head "bothers" him causing him stress, still. I know it takes 3 years to recover from surgery. I'm wondering if it will take that long for his head to "feel" normal again to him. It's just a feeling I have because he gives us looks of distress momentarily and then he's fine.

I still think he could have also fallen on his head or had an untreated virus or meningitis that started them thinking something was up. But why operate? And why didn't they tell us??? UGH!!! UGH!!!

The good news- it's not terminal. We LOVE him. He will be cared for with LOVE and respect the rest of his life. He's home!

Thank You all for your prayers!! Praise God the cysts aren't terminal!

Down Syndrome is the least of Jacob's worries. In fact it has very little to do with his life challenges so far. He does have DS, but the other things going on physically/mentally are far more disabling for him. He has more in common with a child without DS. He doesn't have any of the things you think of with a child with DS. It goes to show how little we know sometimes about people.

The pediatric neurologist Thanked Tom and us for adopting Jacob.
Of course we are humbled at the opportunity to have him in our lives. We Thank God for sending him to us!

(((HUGS))) :o)

4 comments:

  1. Kudos for keeping the 31 for 21 challenge going! You are amazing! And I suppose I will let you off the hook from posting every day, even though I'll have withdrawal pains. Your posts have been very interesting, heart-wrenching,and humorous.

    I'm glad you found out that Jacob's condition is not life threatening. I'll be praying his little noggin' heals and he is relieved of the pain or odd feelings inside. You are a good mommy! Jacob can't tell you in words but you are already so in tuned to him, you know.

    Love you!

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  2. I am so touched to read that the ped. neurologist THANKED YOU for adopting Jacob. WOW.

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  3. To God be the Glory! Tears of joy over here reading this post. I am thrilled that it's not terminal. We will continue to pray for his healing. Poor little guy. Praise God that he has you and Tom!

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  4. Prayers for wisdom as you sort through the test results and watch him for signs of pain or discomfort. So glad he is now in a place with a family who will pay attention to his comfort. Blessings, Jennifer

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