Not flesh of my flesh, nor bone of my bone; but, still miraculously, my own.
Never forget, for a single minute you didn't grow under my heart, but in it.

Thursday, June 16, 2011

The dfference a trip makes

Boy, the difference a trip makes!! Bobby, the babies and I are in Baton Rouge for a few days to see a Specialist for Jeremiah and for Bobby to take care of some business and for some fun wrapped into it all.  This afternoon we saw a Pediatric Neurologist at the Baton Rouge Clinic who sees ALOT of children with Spastic Quadraplegic Cerebral Palsy and other things as well.  We brought our MRI disk and radiology report with us for her to see.  We came for a second opinion and as we chatted with her (the Doctor) at length about all Jeremiah has been through in his short little life and all that has traspired since home, and things the first doctor has said and all it came to a point that she basically said "You NEED us!"  She explained some things way better than had been explained previously to us and she also flat out said that NOTHING she can see on the MRI disk or report supports the other doctors theory that Jeremiah is dying soon, that his brain stem will be shutting down and not keep him alive.  She DOES NOT agree at all with that.  Now, she did say Jeremiah is and always will be very fragile, we need to be careful with him and avoid infection at al costs and move quicky when infection happens, he may need to be admitted when other children wouldnt.  He is probably going to have repeated hospitalizations over the course of his life.  She said his risk is getting an infection that could be life threatening for him but his brain itself is not just going to shut down.  She can't promise this but short of a pneumonia or infection of some kind that he can't battle there is nothing she can see on the mri or upon exam to make her think he would not live into his thirties or forties or even longer!  The older he gets the more at risk he would be for bed sores and pneumonia.  course he is already at risk for that.  Anyway I feel like a smokng gun has been removed from my baby's life.  Now granted she is not God and only God knows for sure how long this angel boy will live but at least we have a dr now who s listening to us, who is explaining things to us and who had a great rapport with Jeremiah and examined him completely with a Neurological exam.  We were both so impresssed.  So every 6 months we are gonna get to know Baton Rouge well!  lol  We come back December 15th!  Need to start researching holiday things around that time here in Baton Rouge. 

Please be in prayer for our family as the Lord has some thngs up His sleeve for our family and we are very prayerfully walking the journey to see what HE is going to do! :)  There are several things going on and on the horizon and I am not at a point of being able to share them at this point but God knows and so I covet your prayers for all of them.  Now for some pictures for all you faitful bloggy friends :)

Mr sweet frogie boy NOT sleeping during nap time at the hotel :)  But happy :)  He has been kinda withdrawn past couple of days but today at the dr he was giggly and smiley and in such an awesome mood and it is continuing a bit this afternoon too :)

Nap tme for Noah, Elmo and Buddy in the hotel bed!  We have been very blessed at the Drury Inn!  Never stayed in this chain before but it is a nice safe hotel, indoor/outdoor pool, indoor whirlpool (Jeremiah did aweseome with that and his muscles relaxed soo much!) and free hot breakfast and free hot supper!  It is pocketbook friendly though not necessarily weight watchers friendly!  lol.  Worrying already about Monday's weigh in but we will see.

Noah on the Dr. Stool pretending to be a dr.  He was "examining" Jeremiah's legs right before this!  He was like WHAT??  with a big grin when I grabbed my phone to take a picture :)

Jeremiah snoozin in his chair BRIEFLY lol  loud big brothers and naps dont go together :)

Noah eating supper last night.  Hot dog cut up and a nacho bar.  He was n heaven!

He was one happy boy to finally be out of the van and in the hotel! :)  We were waiting on free popcorn and soda's they serve from 3 to 10 pm

Jeremiah gettin a little perkier when we got to hotel :)

Sometimes I wonder WHO he sees when he looks up!  At church the other day an older man came to me literally blubbering and said during worship he looked over at Jeremiah and he was looking up like this and at one point he just smiled a HUGE grin and just stared and grinned up for a good while and then all of a sudden it was over and he put his head down and looked down.  That older man was bawling as he told me and said to me that he believed Jeremiah was seeing sometihng in the spiritual realm!  I have noticed when we have him prayed over at Church and Pastor or someone will say Jesus in there prayer EVERY time they say it he smiles!  I really belive this little guy has a relationship with the Lord that NONE of us can even fathom or understand!

snuggling with daddy :)

My sweet Panda Boy Noah has become QUITE the helper!  He will almost knock you down to try and help! :)  He now (after I remove all knives and such) totally empties the silverward basket and puts them all away IN THE RIGHT COMPARTMENT!  I am like wow!  Some barely 4 year old huh :) 

another shot of him working on unloading silverware!  He also will help hand us dishes and things with persmission if we think it is a safe thing he can handle to hand us :)

And this one TOTALLY shocked me!  HE PICKED UP THE BASKET of clothes fresh out of dryer and carried it ALL THE WAY to the living room for folding!  WOW!

Noah at naptime in daddy's chair earlier this week :)

reading with daddy :)
Noah is soo into dancing now.  We tend to watch things that have music to them (singing bee, dont forget lyrics, gaither gospel hour, etc.) and he his a boogie woogie boy now! :)  lol

Noah had Jeremiah bold face laughin today :)

Thanks guys for reading and caring about us!  We send you all Kisses in the wind!!!


Arnold family said...

So happy about the doctors encouraging words!!!!!!


lorabelle said...

Awww Tami, this is wonderful news! So happy that this doctor is more encouraging! Also enjoy seeing the cute pictures of the boys. I can't believe how big they're getting!
Keep your head up Mama. I think you are headed in the right direction now having found this doctor.:)

Denise said...

This is wonderful news!I didnt get the best news about Jax MRI yesterday so this is great to hear!I am happy you got a second opinion and good one at that!

Leveta said...

That is wonderful news. I am SO happy for you all. I can totally understand the relief this brought you.Praying about your requests too.

The Family K. said...

Yay! I'm so glad that you've finally found a doctor with whom you've got a good rapport. And my, what a report! I'm so happy for you guys.

I loved seeing all the pictures of the kids. Please send Noah over here; my laundry is piling up.

Shannon said...

Tami!!!!!!!!!!!!!!! AHHHHHHHH This made my day!!!!! Hey, was the Neurologist Charlotte Hollman by any chance? Doug's aunt is a Pediatric Neurologist in Baton Rouge. If it is her, she is beyond amazing, loves the Lord and is SO dedicated to her patients....
Sending big hugs and prayers,

Dallas said...


Jill said...

Oh, praise the Lord. And he looks so wonderfully happy in his pictures. I believe he sees something that we do not see as well. You're family is doing such an amazing job.
Jill :)

eliz said...

Praise God!! love and (((HUGS))) to you all!!

Christy O said...

So happy for the good (and more realistic) news!!!!! Wonderful!! Love the pictures!!!!

Smilen Champ said...

My name is Jenna and I came across your blog. Noah, Jeremiah and Celeste are all lucky to have great caring, kind hearted, loving, special, and wonderful parents like the both of you. Jeremiah and Noah have very handsome and cute smiles. Celeste is a beautiful young lady and has a beautiful smile. Noah is a cute and handsome little boy. Jeremiah is a courageous, strong and determined fighter. He is a brave warrior smilen champ and an inspirational hero. I was born with a rare life threatening disease, and love it when people sign my guestbook.

THE WAIT FOR NOAH IS OVER!!!! November 3, 2007~September 8, 2008 First heard about Noah~Noah in our Arms!
April 1, 2009~ June 7, 2010 First committed to Jeremiah~Jeremiah in our Arms!

The FIRST Picture we EVER saw!

The FIRST Picture we EVER saw!
Noah WesLee 5 months old

The First Picture we ever saw of:

The First Picture  we ever saw of:
Jeremiah Harold Sisemore ~1 year

Kisses in the Wind

I hold you in my heart and touch you in my dreams.
You are here each day with me, at least that's how it seems.

I know you wonder where we are... what's taking us so long.
But remember child, I love you so and God will keep you strong.

Now go outside and feel the breeze and let it touch your skin...Because tonight, just as always, I blow you kisses in the wind.

May God hold you in His hand until I can be with you.
I promise you, my darling, I'm doing all that I can do.

Very soon, you'll have a family for real, not just pretend.But for tonight, just as always, I blow you kisses in the wind.

May God wrap you in His arms and hold you very tight.
And let the angels bring the kisses that I sent to you each night.

When Love Takes You In!