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Monday, December 1, 2008

Yes, it is true, our roller coaster ride is now going UPWARD! We are hoping it will continue in this direction from here on out; but we realize that the most exciting parts of the "adventure" are the unexpected, take your breath away drops. SO we aren't going to pretend it's smooth sailing from here...we need more adventures in our lives right?!!! For now, we will ENJOY the moment!

Emily's ANC count went from 400 to 1600 which is awesome!(I know these numbers don't mean much to any of you but I need to put them in for our sake) The doctors are really happy with her progress. She actually has more T cells(300) than she EVER had before! She has a long way to go but the tests show that she has 100% donor cells and she has 70% bone marrow; which they say is a great thing.

We start today with her 6 month Cyclosporine(the hairy medicine) taper; she gets to stop one of her IV meds and our weekly appointments are going to be every 2 weeks now, isn't life wonderful?

I am happy to report after a weekend a working so hard on eating, Emily is up from 16.9 KL to 17.2 KL I can take none of the credit for this because it was ALL DADDY'S doing! I can't believe how long(4 hours yesterday afternoon) he sat with her, encouraging and coaxing her into eating just one more bite. I warned the nutritionist that I am not this patient! I told her I can't promise the same results when we come back because I can't sit with her all day trying to convince her to eat. For example, it is 3:00 and she has had about 200 calories. Only 1000 more to go! UGH! The doctor said to keep her gaining and I started to laugh saying how hard it is just to get her to maintain.

When we go back in two weeks we will see where she's at. If she is has gained weight(cross your fingers) no worries, otherwise we will probably put in a "button" which is a tube they surgically insert into the side of her stomach. It isn't seen by anyone and we can access it at night to put food in. I hope it doesn't come to this but I am glad there is another option. The NG tube through her nose was horrible...she had such a hard time eating with it in; so it really didn't help the situation.

If anyone wonders if prayers work...just know that they really DO! We don't know why Emily's counts were down but I do know without a doubt, that all the faith and prayers from all of you helped bring them back up. THANK YOU!!!!

4 comments:

Cheryl said...

Jill--I got your beautiful family picture today and I love it. Thanks for including the blog address so I could keep up. I miss living next door! I miss our old neighborhood. I wish we could be there to offer what assistance you might need. I read some of the blog today and cried. NOT from pity, I dislike that (I get that occasionally from what we go through with our 3 special needs kids). But from how brave Emily and Jacqueline are and how amazing the whole family is. We miss you and love you. You all now are in our prayers.
Cheryl

Jolyn Buhrley said...

I have tears of JOY right now!!! Jump up and down, hip-hip hooray JOY!!!! Justin and Gracie didn't know what "my count's are up, my count's are up" meant, except that it means Emi is doing better! So it will now be our FAVORITE song!! We love your Christmas photo, our first one of the season! You must have too much time on your hands....:) I'm very impressed! I don't know HOW you do, ALL you do! I wish I could hear one of your lessons.We LOVE,LOVE,LOVE you all!!!xoxoxoxoxoxoxoxo
p.s tell me how you get cute new borders for your blog, i love your Christmas one!!!

Monica said...

Boy it's time to enjoy lifes little moments of JOY! What an exciting to day to celebrate!!! We love you all so much! Jill you are amazing! How do you do it all! Honestly, Mom told me how you got her tree up and cleaned her house! You are amazing! I'll be lucky to get my tree up and clean my house! You're my hero! I think you must be the energizer bunny like my husband. It must run in the genes! I loved your christmas card! I feel honored that you used a picture that I took of your family! I also love to see you use your collage on Picasa! I'm so glad that you are enjoying that program!

Meg said...

LOVE YOU!!! SO VERY HAPPY THAT THE COUNTS ARE UP!!! LET'S KEEP THEM GOING UP!! Maybe next week emily can do a cheer.. I ate all my calories! I ate all my calories!! Don't we all wish that we could eat them and they would count for her?! That would be FABULOUS!!