Jillian Rose’s CP Blog

long time – no post

November 22nd, 2008

Hi friends and family!

It’s been quite a long time since I’ve updated this blog.  Has anyone ever found out what mischevious little creature comes into your life and takes away your extra time in the day?   Most of you have probably given up on checking this blog for updates……….sorry.

But my lack of writing definitely has not been due to lack of improvement to report for Jillian, I’m happy to say!  Yes, she has showed really big gains…..and in such a short time!  They’re things that are so big for a brain-injured child. 

As most of you know, that followed our blog while we were still in China, Jillian started “clapping” her open palms together pretty much immediately, right after the first IV injection.  Before when she would clap, her thumbs would be tucked inside both fisted hands.  She is still able to do that, and use her right hand much more and open her right hand on command.  Anyone familiar with a child with cerebral palsy, you know that that is significant all in itself.

Since returning home (we’ve been home about a month and a half), she’s had the very best gain that could possibly warm a mom’s heart………  Before the BMT, whenever she would give me a kiss, she could only kiss me with her mouth wide open.  Within 2 weeks of being home, she’s been able to close her mouth to kiss me………and even better, she gets a little pucker on her beautiful little lips!!!!!!!  And her pucker is getting better and better too!  Poor kid…..she  must be thinking “enough kisses already Mommy!”  I get kisses from her ALL the time!  It’s my favorite thing!  She’ll kiss me, I can’t help but to get all excited like it’s the first one, and she’ll laugh…..I say “okay, one more kiss!”  “Another kiss for mommy!”  “Just one more!”  “Okay, last time…one more”  “Quit laughing and pucker up!”  She gets as proud of herself over each and every kiss as I do!

Next, and this is a biggie, she’s been able to support her weight on her little arms when I put her in a 4-point crawl position!  Do you have any idea how huge this is?!  She has NEVER been able to do this before, even slightly.  When I would place her in that position, on her hands and knees, she would just collapse down like a little rag doll.  Now, she’s supporting her weight on all four limbs!  The legs are better than the arms……..she’s able to push herself up to a kneel position, all day long, like she’s been doing it forever, an old pro at that…..her little legs push up….then back down…..back up…..back down.  I usually position her arms for her, then she’ll hold strong…..until she starts laughing so hard from being proud of herself and then the arms will go back toward her body automatically.  But she can DO it now……and it’s getting better daily!  Do I even have to tell you that the first time she did this, I cried huge happy tears?!  I was all blubbery with the biggest smile on my face.

Her sitting is getting MUCH better too.  We’ve been sitting on the stairs together, me on the stair above the one she sits on, and we read books, and she sits up pretty much independently.  I don’t even hold her at all, just put my arms around her like a cage while holding the book (but not touching her), and she sits up strong.  She wobbles some, like she’s had one marguerita too many, but she compensates her balance 90% of the time and catches herself and rights herself.

Jillian has a 4-yr-old cousin, my niece, and she has one of those motorized Barbie Jeeps.  Well, I was nervous about letting Jillie sit by herself in it……..before, no doubt about it, she would have flopped over constantly, and I would have had to walk next to her holding her shoulders so she wouldn’t fall over; her balance would have been horrendous, especially on grassy, uneven terrain.  Well, her sitting has been so good, I decided to let’s try it.  I sat her next to her cousin in the Jeep……..all I did was put one of those flat bungie cords around her chest and hook it to the back of the seat….super loosely, not tight at all.  She rode all over the property with her cousin in that Jeep!  With the hugest smile on her face!  And all I did was walk next to her holding just her hand!

There are other things, just that she seems to have grown up a lot.  (Don’t know how I feel about that…..I don’t want her to grow up!!!!!!    I want for her to stay my little little girl forever!)  But it seems that I took a toddler to China and brought back a 4-year-old little girl.  Like before when we would read books, most of the time she was just interested in turning the pages……now she follows a story and points out things in the book.

So I knew that this would not be an overnight cure……that it would take time and determination, on her part and mine, and deligence, a faith in her, and in God…..and patience.  But it seems that, indeed, it is paying off……that the hope we all have for her is manifesting into reality, into a little girl that is able to control her little body more and more….. And to watch the realization on her face when she knows she is doing something she couldn’t do before is priceless. 

We’re going to the Florida area for hyperbaric oxygen therapy for the month of January.  It is recommended 90 days post stem cells……that is the optimum time.  Which that is right about the time that I was told that you usually don’t see any big gains until that timeframe anyways.  So by that time, those little cells have set up camp in the damaged area of her brain and have a good foundation to start rebuilding brain tissue.  Doing hyperbaric oxygen therapy will be like giving Miracle Grow to those new little brain cells.  I can’t wait to see what will happen once we start that!  And I definitely let all of you know too.

I hope all of you will still check in and read the blog from time to time.  Like I said, there hasn’t been a post for so long, you’ve probably given up.    And remember, I LOVE those comments!  Don’t forget to post a comment to us!

Thanks for all of your prayers that are still rolling for Jillie Bean!  

With love, hugs, and smiles (and Jillie’s new pucker kisses!),

Tami and Jillie

P.S…..Just a side note….if there is anyone here that has received e-mails from Carole, could you please let me know?  Just e-mail me privately at tamalalee@aol.com.  Thanks…I appreciate it.

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