Update on Kaci

Kaci's Mom

New member
Well it's been 13 weeks since Kaci had her last stem cell treatment. She is doing GREAT!!!!!! The one thing everyone has noticed is that her hands work better! Her right hand especially, which has always been mostly in a "fisted" position, now opens with ease. She has almost learned to tie her shoes!

Everything she does with her physical therapist lately (especially those things she has been working on for years) is now starting to "click" and become so much easier. I definately see bigger changes this time as opposed to last time we did this!!!!!

The other day she was outside playing on her playground (not as supervised as she should have been), I decided I should probably check on her. To my horror (yet it was a pleasant surprise) there she was climbing up the ladder to get up to the top- ALONE!

Also on a different occasion (during speech therapy) out of the blue Kaci decided she wanted to walk over to me (without the assistance of her walker or crutches)- SHE DID!! Then she walked back to where she came from.

Kaci is VERY excited about her progress. She's already talking about our next trip. Very cool!

The one major thing I noticed this time more than I did after her last treatment is how much sleep she needs. Since she got the stem cells she sleeps 11 hours or more a night. Last time her appitite was huge and she slept a lot (but the sleep thing didn't last this long). Also this time her appitite isn't as big. She eats well, but last time she ate twice the amount of food she normally did at each meal. I don't know if it's because she's been eating organiclly (this time) for a year prior to the stem cells. Where she only started eating organiclly right before her 1st treatment. It's such a puzzle.

Kristin
 

barbara

Pioneer Founding member
Thank you so much for the update. Have you mentioned her sleeping and eating changes to her stem cell doctor? I find that very interesting. Dr. Young always advocates plenty of sleep to repair ourselves especially after treatment. Maybe, Kaci's body is just telling her this on its own.
 

Kaci's Mom

New member
I HAVE mentioned this to her doctor- he says basicly what Dr. Young says. Infact one of the things that is said in thier "Handbook" is if you feel tired- sleep. (Quoting) During the first part of the night (from about 10pm to 3pm), growth factors such as human growth hormone are stimulating stem cell growth in the brain as well as the body. From about 3am to 7am, cortisol is stimulating an increase in glutamate to assist with memory consolidation and the incorporation of brain cells into the neural network. Both aspects of sleep are important for cell repair and learning and memory. Don't fight fatigue. If you are tired during the daytime after the stem cell treatment, the increase of growth factors are doing their thing with slowing down the body for cell repair. If you are tired, rest. If you are sleepy, sleep. The calm allows for sufficient serotonin and melatonin to promote stem cell growth.

I would have to say that is probably what's happening with Kaci. It also might be a way to gage when her progress may taper off?

Kristin
 

Cynthia

New member
Amazing

Kaci thanks for the update. I am so happy for you and your family!!
I know one of your updates is going to say.... she's cured!
 

alex

New member
Hi Kristin,

This is good news. I am so excited for you.

How many stem cells did Kaci get this time? Did they use umbilical cord blood stem cells?

We are planning to have another stem cell treatment for Frank within the next couple of months.

Keep up the good work.

alex
 

Kaci's Mom

New member
Hi Kristin,

This is good news. I am so excited for you.

How many stem cells did Kaci get this time? Did they use umbilical cord blood stem cells?

We are planning to have another stem cell treatment for Frank within the next couple of months.

Keep up the good work.

alex
Thank you so much!
She got the same amount as last time (6million umbilical cord stem cells). The catheter delivery method is definately the way to go!!
Good luck to you guys on the next time around.
Kristin
 

Sasori

New member
Yippee!

So pleased Kaci continues to improve! When are you planning her next treatment? Perhaps we can 'hang out' in San Diego LOL.
We were terribly disappointed with Daryl-Ann got infected adenoids 4 months post treatment which really slowed her improvements down. HOWEVER, she had increased her weight from 8.9kg to 10kg (that's 19.5 pounds to 22pounds for you yanks!), in the first 4 months, and then even through she spent the next two months throwing up and eating less because she couldn't breathe properly (adenoids were HUGE - even the paediatrician was impressed), she managed to maintain that weight until the tonsils and adenoids were removed on August 12th. Then...two weeks later she got a tummy bug! But she only lost 40 grams (not much), and now has put on another 1/2 kilo! (1.1 pounds). We've removed dairy from her diet which has made her gag less, but she still loves her special chocolate milk.
So we've gone from having her health agency basically telling us we have to put in a gastric tube to feed her, to her paediatrician FINALLY being impressed with her weight gain lol.
Still, could really do with some more improvements! So fundraising kicks off again *sigh*
:)
 
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Kaci's Mom

New member
So pleased Kaci continues to improve! When are you planning her next treatment? Perhaps we can 'hang out' in San Diego LOL.
We were terribly disappointed with Daryl-Ann got infected adenoids 4 months post treatment which really slowed her improvements down. HOWEVER, she had increased her weight from 8.9kg to 10kg (that's 19.5 pounds to 22pounds for you yanks!), in the first 4 months, and then even through she spent the next two months throwing up and eating less because she couldn't breathe properly (adenoids were HUGE - even the paediatrician was impressed), she managed to maintain that weight until the tonsils and adenoids were removed on August 12th. Then...two weeks later she got a tummy bug! But she only lost 40 grams (not much), and now has put on another 1/2 kilo! (1.1 pounds). We've removed dairy from her diet which has made her gag less, but she still loves her special chocolate milk.
So we've gone from having her health agency basically telling us we have to put in a gastric tube to feed her, to her paediatrician FINALLY being impressed with her weight gain lol.
Still, could really do with some more improvements! So fundraising kicks off again *sigh*
:)
We're supposed to celebrate even the "littlest improvement"- which it totally sounds like you are!! I agree, "weight gain" is a BIG thing-especially with no feeding tube, infections. and illness. That is HUGE!!! (Kaci gained a bunch of weight the 1st time too- but she didn't get sick). I am anxious to hear how Daryl Ann does without having the offset of her adenoids standing in the way!

We will go back again this summer (late June, early July- school gets out late this year). Good Luck with the fundraising!!! See you in San Diego.;)
 

barbara

Pioneer Founding member
Ladies - This is really nice to read about the weight gain your children are experiencing. Makes my day when the little ones make such progress.
 
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