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An Update On My Daughter, Tianna

chrissy

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chrissy Collaborator
chrissy
Posted

tiann's clinician called me today and said that tianna was having a harder day today and not eating as well. they have told her that she has until tuesday to start eating better or she will be getting a feeding tube. kassie (her twin) took tianna's yearbook around and got people to sign it. the hospital she was at originally (st. luke's) sent her a card that all of the nurses had signed. tianna also told me that one of the nurses had sent her a card and a book----this was so sweet of the nurses at st. lukes hospital!!

our ped gi tested tianna's Ttg levels while she was still at st. luke's hospital----he said she has been getting gluten. her levels should have been 0 by now, but she was still at 10. she admitted to me that she had had gluten. the doc said she may have thought it was an easy way to lose weight. i hate having her so far away, and i hate her being sick, and i want her to want to get well.

i will be sending her school yearbook to her, and i think i will make a small scrap book or picture album to send also-----anyone have any other ideas of things that i could send her to help lift her up?

christine

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Ursa Major Collaborator
Ursa Major
Posted

Does she have a personal C D player or an mp3 player and headphones? That with some of her favourite music would be excellent. What might be really good (unless you've done that already) would be a letter, in which you tell her how much you love and miss her (you can never assume somebody knows that, and you can never say it often enough), and in which you tell her all the things you love about her. And how much you're looking forward to the day when she is well enough to come home.

Matilda Enthusiast
Matilda
Posted

..

CarlaB Enthusiast
CarlaB
Posted

Thank you for the update. I was thinking about her just yesterday.

Guest nini
Guest nini
Posted

thank you for the update, I am so concerned for her and your entire family, that must be so incredibly difficult. I agree with Ursula, you can't tell her enough how much you love her and miss her and want her to be well enough to come home. She can't hear that enough. The level of gluten she is getting (or was getting) may not be intentional, you have to be really vigilant to make sure the facility she is in is 100% aware of all the hidden glutens and is doing everything they can to make sure she's not getting any through medications or supplements or even lip balms...

A feeding tube while scary, may be a good thing, but again, you will have to make sure that they make double sure that whatever they put IN that feeding tube is gluten-free.

Sending you lots of cyber {{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}}}}}}}}}}} and positive healing energy for your daughter.

TCA Contributor
TCA
Posted

I've thinking of you wo much. Thanks for theupdate. While a feeding tube may sound scary, it's not bad at all. My dauther has had one all but about 2 weeks of her life and it's literally been a lifesaver for her. If it gets her the nutrition she needs, then it may be best for while. I'll send my prayers since I don't know what else to send. Hugs.

Lauren M Explorer
Lauren M
Posted

Chrissy,

I hope this doesn't come off as sounding strange, but I think about and pray for your daughter everyday. As I've said before, I suffered from disordered eating (brought on by my health complications due to Celiac) and spent a couple of months in a treatment center, so I definitely sympathize.

I don't know where Tianna is hospitalized right now, and all places have different rules. A lot of the girls where I went (Renfrew) were obsessed with knitting - very therapeutic and good to keep the hands busy. I started doing crossword puzzles like it was my job, and also took the time to do some "fun" reading - books that I had been wanting to read, but hadn't gotten around to. Also, a lot of the girls I was in treatment with were quite into Sudoku (sp?) though I never tried it! Arts and crafts projects were popular - it was funny to see grown women taking pleasure in using coloring books! Beading, etc. is also fun.

Best of luck, know that there will be good days and bad, ups and downs, but we're all here for you. If you ever want to talk personally, feel free to e-mail or PM me. I'll continue praying for Tianna and your entire family.

- Lauren

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Smunkeemom Enthusiast
Smunkeemom
Posted

I had a friend who was in rehab once and her mom sent her an "I love you" book, she wrote a few stories about fun times they had together, then a page about all the wonderful qualities her daughter had. She left the rest of the book empty, her daughter wrote a few stories and mailed it back, then they went back and forth with that for a while, it was pretty cool.

Also, you might send her a journal, that way she can vent without having to feel like she is yelling at someone. ;)

ryebaby0 Enthusiast
ryebaby0
Posted

I'm so glad you gave us an update :) One thing my son really liked while in the hospital was a video one of his friends made -- it's really just a "day in the life" kinda thing, they carried a camcorder around everywhere they went, and it's only about 15 minutes long, but it was a nice change from the relentless get-well wishes (sometimes that's just a lot of pressure) and fun to see home, when he couldn't be there.

A journal is also a great idea. Even a pocket cassette recorder, so she can "talk" a journal, might be nice, depending on what she likes. And along with the love and support, remind her that you aren't mad that she isn't well (as I am sure you have done, and will continue to do)

joanna

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