Johanna (Cataholic) & Sister Jessica continue to Request Prayers for young Samantha

[chrangharris]

Yeah Sammy! Way to get moving!

[Cinder & Smoke]

Saturday, October 01, 2005 at 07:34 AM EDTSam's last labs were okay, and she's continuing w/OT & PT.

Her skin is healed enough to begin looking into prosthetics, though we are still trying to track down her "pressure suit"; we were supposed to have it in August.

She's sleeping better at night--and so are we--and the vomiting has lessened quite a bit since her cold started clearing up. She spent a couple of half-days at her daycare, and did well; Rob must return to work eventually, so we want to get her back in the swing of things. She is still scooting and crawling, and just seems a lot stronger these days.

Sam had a wonderful time at the Brown County Fair yesterday, and LOVED the merry-go-round. We had to keep taking her on it, as she threw a fit each time it stopped.

Next week it's back to Children's for the kidney check; I'll add more then. And yes, I took some pictures at the Fair, and will try to get those and all the rest up before too long.

Thanks,
Jessica


GOOOOOO, Sammy!!

[Cinder & Smoke]

Saturday, October 08, 2005 at 05:44 AM EDT

Labs are still holding steady, and the scope went fine--a quick 20-minute procedure. Everything looks okay, and there's only a small amount of scar tissue, which shouldn't interfere w/anything. They will check again in 6 months.


Sam's kidney doc and the dietician want to try taking out the feeding tube, and seeing how Sam does; she can take some of her formula by mouth, and they think she'll get hungry enough to start eating. We start Monday; please hope for a hungry Sam!

I think it will really help when she's sitting w/her friends at daycare, seeing them eat. She did well at daycare last week, and is in w/the preschool group, as the slightly older kids can better understand what to do and not to do around her. Sam's really enjoying herself, and we are so grateful to Karen and Dave and the rest of the staff for providing such a safe and nurturing environment for her.


We are hoping that Sam can perhaps be completely "cordless" by Christmas; they will remove the PICC when she's down to getting labs only once a month, and the dialysis catheter (they would've removed it yesterday, but couldn't, due to surgeon availability) will maybe come out in a couple months. We'll be talking prosthetics soon, too, so exciting things are coming down the pike for Sam as the year winds down.


Thanks,
Jessica

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"Cordless by Christmas" sounds good!
We'll ask Sandy Pawz to send some batteries!

GO, SAMMY!!
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[Karen]

Sounds good, still in our prayers. I agree - there's probably nothing better than see her buddies eat to make her want to do it, too!

[Anita Cholaine]

You're still in my prayers, Sammy....

[sasvermont]

I think of this child and her family nearly every day, several times a day. I hope she is continuing to improve and that life begins to resemble something rather ordinary for all of them. Sammy and her family ARE exceptional people!

I hope they are all fine..........

Keep up the hard work.......

Thinking of you Sammy dearest.

Love,

Camp Vermont

[Cinder & Smoke]

Sunday, October 16, 2005 at 08:41 PM EDT

Well, the feeding tube came out Monday, and Sam is managing to eat and drink like the big girl she is. The eating was slow--bite by bite--for most of the week, but really picked up this weekend.

She went out to eat with Mom and Dad tonight, and really put away the fish and tartar sauce; Mom even managed to get most of the sauce out of her hair by the time we left. She's drinking plenty, and the doc said that was the most important thing in the beginning.


On Monday, she saw her eye doc, and he was pleased; her nystagmus (eyes rolling back and forth, common in albinism)has decreased, and her illness seems to have had no effect on her vision. She will probably get glasses next year, as they seem to help lots of kids w/albinism, but her doc said there's no rush, as toddlers either won't keep them on, or break them, and after all she's been through, he didn't want to start something new right now.


Before her appointment, she got to spend some time w/her cousin Jonah (or "Jono," as she calls him), and see Grandma. She had a great week at daycare as well.


Her plastic surgeon, who also works at Shriner's, wants us to reconsider Shriner's for her rehab; he had already spoken to them, and told us that they'd be willing to accept her back for rehab, which would mean they would coordinate therapies, prosthetics and any future surgeries. He says we would start on a "fresh page" with them, and is setting up a meeting for all of us to discuss this possibility. He feels her rehab would be best handled by those w/the most experience w/cases like Sam's, so we'll see. We have another kidney check-up Friday, so keep your fingers crossed for Sam.


Thanks,
Jessica

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Fish 'n' Sauce looks Good on ya, Sammy!!

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