Relieved-happy-DONE!
September 26th, 2008
Hellooooooo!
SHE’S ALL DONE!!!! SHE’S ALL DONE!!!
As you may gather, Jillian had her LAST injection of her own bone marrow stem cells today! It went excellently too! Of course, she knew exactly what was coming when they came in for the IV and cried pretty darn hard. After the IV was in, Dora and Sesame Street band-aids made it feel much better. We wheeled her downstairs and Dr. Mike was right there during the anesthesia. They didn’t let her go to twilight this time, but wheeled her back while she was still aware. After the procedure Dr. Mike came out and told me that Jillian was smiling at him and holding his hand while she was going under and never cried. It was so fast…..she was out in probably a half hour.
When they wheeled her out she was still groggy. When she looked at me her eyes weren’t really focused; they kind of wobbled a little. She was very calm. I said “Hi baby!” and whatever else I said, can’t remember, and she reached out her little right arm to pull me in for a hug. Oh, man, I melted. I love every one of her hugs, but this one was even more special. And the hugging thing is fairly new too, but before we came to China. That started about a month before we left. But ABR, the therapy I do with her, gets all the credit for that. (And the pointing she started to do about two weeks before we left, taking her little index finger and pointing at things and starting to push buttons, ABR gets all the credit for that too, and LOTS of other stuff over the last year.) I am certain that between the two, ABR and stem cells, Jillian will be able to do so many things she sees other kids do!
When we got back to the room, she acted like an old pro. Never whined or cried. She knew that after each of her previous procedures she got a banana when she came back to the room, one of her all-time favorite foods. Get this………!!!!!!!!!……….she looked at me, with wobbly eyes, and said “ba ba.” She hasn’t ever been able to say the “b” sound before! She was asking for her banana! I mean, I know it wasn’t a direct result of today’s stem cell injection, but there’s something going on in that little brain of hers from probably the first ones! So chalk up another new thing she did! I KNOW they will keep coming!
She is running a little fever this time though. Oddly, when Jillian got a little fever after the first IV stem cell injection, all the other parents said that their kids didn’t get a fever with the IV one but only after the spinal ones. Jillian, up until now, has been just the opposite, only getting a fever with the IV and none after the last two spinals. But tonight she was running a fever of 99.2, which isn’t that bad, I know, I just wish she didn’t have to have one at all. So it is something that we’ll have to keep an eye on through the night and for the next couple of days.
I can’t wait to go home! I was talking to Jillian about it, and she can’t wait either. I can’t wait to see clear blue skies, to not have to wash dishes in the tiny bathroom sink anymore, to have a real refrigerator (that’s not the size of a postage stamp), to not have to mop the bathroom floor after each shower (there is not a separation between the shower and the rest of the bathroom…there’s a curtain, but when you take a shower the water runs throughout the whole bathroom and there is a sponge mop in there to mop it up when you’re done), to be able to give Jillian a bath at home and not in that concoction ………correction…..for DADDY to give Jillian a bath at home! To get back to eating the stuff we’re used to eating, and to have a KITCHEN to cook in!!!!!!!!!
It is customary for the patients to have a red banner made for the doctors expressing thanks before you leave to go home. I’ll show you what I mean in the next post…..I’ll take a picture of this one hallway where there are many banners left by previous patients so you can have an idea. I’ve ordered our banner and we’ll give it to the doctors and staff on Sunday. Also people do things like give a bouquet of flowers and special cakes. It’s a big deal when a patient and their family leaves. They’ll probably all pass Jillian around and take pictures with her, and we’ll do a lot of group photos; it’s like an official exit and it’s a very happy, yet nostalgic, moment. I’ll try to post the final pictures on Sunday night before bed.
I’ll start packing tomorrow so I don’t have to leave everything for Sunday. And then we leave about 10 a.m. Monday morning and drive almost 3 hours to the Shanghai Airport, do all that fun stuff there, then have a 15 hour flight to Atlanta. We’ll part with Carole then, sadly, and she’ll fly on to Florida so she can go home. Brian is meeting us at the airport and picking us up to drive us back to Alabama. I wish he could meet us on the other side of Customs and help me get all of our baggage through, but I seriously doubt that’s an option. So that’s all I’m worried about is juggling all of our luggage and Jillian in a stroller all by myself. Maybe an angel will show up to help!
Well, our little angel girl is sleeping soundly, and I think I ought to start heading in that direction myself.
WE LOVE YOU AAAAAALLLL! Thanks for loving us too and for letting us know!
Will write again soon (I hope)!
Love,
Tami & Jillian (And Carole too!)
Entry Filed under: cp,Uncategorized
10 Comments Add your own
1. leo and sharron | September 26th, 2008 at 11:12 pm
I have been following your blog and am so happy for J Rose.
You have been a trooper through all of this. I guess there is nothing as strong as a mothers love for their child.
We love you and hope and pray for this to give J Rose everything it is meant to do
Love ya
Leo and Sharron
2. "Skip" | September 26th, 2008 at 11:20 pm
Hi Tami
I Give Praise to the Lord for bringing Jillian through this. Is’nt God great. All my prayers thus far are ansered, still have a lot more for you. Like for a safe relaxing trip home and more. Will keep Jillie in my pray until she is walking and talking and you have to chase after her all day, and then some.
As you can tell I I’m back home for a couple days and can read your reports on Jillie Bean. I figured out how to get each days report by calling my sister and haveing her read it to me. Worked for me.
Looking forward to hearing about all the new thing Jillie will be doing now with all those little stem cells going to work.
Love and prayere
“Skip”
3. grammakuna | September 27th, 2008 at 2:07 am
Oh yeah !!!!!!!!! Once again, THANKYOU GOD and Tami and Carole
for all you’ve done for the bean. I’m sure you are ready to come
home. We are all ready for you to come home. The next couple of days will fly by. When you have your going away party please
remember to thank Dr Mike,LaLa,Zim, and everyone there for taking such wonderful care of Jillian from her family and friends. I know special things are ahead for her. We’ve all been blessed to
have Jillie in our family and lives. And she’s been blessed to have
been given the opportunity to get these stem cells. One thing
Tami, see if you can bring her records (or copies) home with
you. It might be important in the future. WOW I can’t believe
she’s had her last treatment. Good going girls. Love,kisses and
sugar Gramma K Zi Jin for now
4. Jenn | September 27th, 2008 at 4:16 am
Hello Homeward bound Family
I an sure that there is alot of excitment going through all of you. But Yes you get to come home……. Yeah!!!!!!!!! I am so very Proud of all of you. You have been on a very long and hard ride and now you get to get off soon. You deserve more rest then you will get but the result will payment enough. I will be waiting for the bolg of Sunday. Please keep us up to date when you get home.
Carol. againe Thank-You for all you have done for Tami and Jillie. I can nerver Thank-You enough for doing all that you have done. May God bless you and always keep you safe and health. You will always be part of my Family and if there is ever anything that I can help you with, Please ask…
Please send Thank-You’s to Dr Mike and all the Nurses for all they have done.
We love You
Jenn, Doug, and David
5. Samantha Blakely | September 27th, 2008 at 6:00 am
Hello Miss Tami! We are sooooo glad that you and Jilli Bean are doing well! I am sooo proud of her for learning more sounds. We are continuing to keep you and Jillian in our prayers. She is such a good girl! You both deserve the BEST! You put a smile on my face everytime I think about you.
We love you!!!!
Samantha Blakely and family
6. Sue Kelly | September 27th, 2008 at 6:18 am
Congratulations! You made it through! Now all is needed is prayers for a safe trip home. I can’t wait to see what the next few months will bring for Jillie. Thank you for being so detailed with you explanations of how things work over there and for the pictures. I am sure it will come in very handly for anyone contemplating stem cells. I’ll be looking for your progress posts both here and on the ABR site. Have a safe trip home!
Sue and Ryan
7. Marie Barker | September 27th, 2008 at 8:19 am
God’s hand it at work in you, Jillian and the medical staff. I pray for safe travel and the miracles that have yet to be seen.
Your new prayer friends in Florida,
Marie Barker & Family
8. Allison and Sam | September 27th, 2008 at 11:50 am
WOW WOW WOW! I am so excited for all the new developments. You’re just unlocking that little bean more and more, and I couldn’t be happier.
And come on now, girl. You’re worried about luggage? Luggage is nothing compared to the mountains you’ve moved!
Praying all the time,
Allison and Sam (and Tim and Ben)
9. Varinia | September 28th, 2008 at 9:55 am
Hi Tami,
That is so great. Quite a relief when it is over, I can recall the feeling. Watch closely her body too. From teh way she bends arms, knees, turn. Put her in bed on her tummy, notice how she turns in her sleep.
We saw a lot of changes in this area while we were having the treatment.
I wish you guys have a nice and safe trip back home and keep teh updates coming.
Varinia and Corvin
10. grammakuna | September 28th, 2008 at 9:34 pm
Good evening, Just wanted to tell you to have a safe trip
home. We’re all praying for a safe journey. Can’t wait to
hear you’re home. Can’t wait to hear about all the small steps
that lead to a giant leap. We love you. Kisses,hugs,sugar GrammaK
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