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Old 09-28-2006, 06:42 PM #1
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Chasesmom Chasesmom is offline
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Default Chase's update

Hi everyone - it's good to see everyone and get caught up - it's been like forever since I've had access to a computer and I am am ever so grateful to be back home - <knocking on wood> It was a year Aug 13th that the whole medical ordeal started - and they are far from over - but at least he is stable now. Let's see - currently he has a gj mickey, is on TPN/Lipids for 16 hrs a day, gets nothing orally except some popsicles and is not being fed enterally either (keeping our fingers crossed it won't be too long). He can not walk at all now - can't even stand - so much for inpatient PT - but hopefully it won't take him too long - his legs are just so TIGHT - and they say he has heel cord and hip contractures - He is looking great these days - he went in LeBonheur weighing like 26 pounds last year and now weighs 52 - a frigging little chunk that is HARD to carry around. He just got his new AFO's and we will be ordering the special tomato chair and a stander - he still has his gait trainer I am hoping can be adjust but he may have gotten to big. But right now he is infection free - he has been in the hospital all but two months (and that's not at one time since Aug of last year. It's been one CVL infeciton and trip to ICU after another but hopefully hopefully we will be able to stay at home. Look forward to catching up with everyone!!

Dana - Chase's mom
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Old 09-28-2006, 07:27 PM #2
langansmom langansmom is offline
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Dana,

I am sooooooooooooooo glad to hear that you and Chase are out of the hospital!! Can't tell you how much you have been in our thoughts. I hope this is the start of a LONG time out of the hospital and a speedy full recovery!!

Hugs to the handsome little chunk!!
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Wendy, mom to Langan, the love of my life, born 7/19/02. Global delays, intractable seizures, mystery girl. VNS implanted 2/10/06, now on small dose of lamictal and fighting for seizure control, and wife to Jon, the other love of my life!!
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Old 09-28-2006, 07:38 PM #3
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((((((Dana+Chase)))))),

Oh, my goodness!! I've thought about you and your boy often during the "Summer Drought of 2006". I wish we could have 'been there' for you more.

I'm glad Chase is home FINALLY!! Hopefully, all the bad stuff is totally over with for now and forever. We've been praying awful hard for that wonderful boy of yours.


BIG HUGS (and love). I wish you could see the big grin on my face

Barb
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Old 09-28-2006, 11:39 PM #4
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I wrote you a reply on the first post that I saw you:
http://forums.braintalk2.org/showthread.php?t=2012 #4. Welcome, again.
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Mom to Samantha (10), Claire (9), and Tom (7). Tom is developmentally delayed with poor vision, lousy fine motor skills and epilepsy. His seizures are pretty well controlled through diet - dairy-free, gluten-free, rice-free, and coconut-free.
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Old 09-29-2006, 02:20 AM #5
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I'm so glad you're back home now, and that Chase is so much better!
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Old 09-29-2006, 10:34 AM #6
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I am so glad that chase is back home and doing better. I held my breath fo so long for you guys. It makes my day to see his little picture, with a smile!

((hugs))

Denae
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Denae- Mom to
Riley (9)- Lennox Gastaut Syndrome & Charcot- Marie-Tooth
Brittany (11) a Prissy Princess
Sarah (14) Aspergers Syndrome
Victoria (16) Above Average Teenage sister
Jade (11) my niece, but now also my baby
Jacob (6) Possible Aspergers, but we have to sort through his anger/abandonment issues first
Jackson (4) The sweetest little guy you will ever meet.
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Old 09-29-2006, 02:16 PM #7
just laurie just laurie is offline
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You are HOME?! That is wonderful. What a year that was. Hope you stay home for a good, loooooong time.

Laurie
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Old 09-30-2006, 10:18 AM #8
Heather Heather is offline
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What a relief to see Chase plump, smiling and to know he's back home! You've had such a hard year. Wondering how Chase was doing was a nagging concern. I hope he continues to get heavier, even though it makes him harder to carry . Did he outgrow his tomato? Your posts about how his was "The Bomb" were what made me work to get a tomato for Aidan. We were only able to get funding for the cheap model, so it will fit forever, although I wish it had all the deluxe support, footrest and a table like the better models have.
Love & Hugs,
Heather
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Heather b 1954 married to Husband William b 1954 (dx bi-polar), estranged son Casey b 78, daughter Amber b 82 (dx bi-polar), son Alex b 86, adopted daughter Ariana b 4/02 (adhd?), permanent guardianship, son Aidan b 8/03 former 26 week preemie, severe quad cp, seizure disorder, shunted hydrocephalus, g-tube dependant.
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