CP, Hydrocephlaus, VP Shunt, Oxygen dependant. No verbal or signing communication

Eliabeth - posted on 01/29/2009 ( 5 moms have responded )

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Hi, i am mum to Adam aged 8 with severe Quadraplegic CP, Hydrocephlaus, VP Shunt, Chronic Lung Disease, oxygen dependant, Nystagmus, loss of vision and hearing problems, Communication by body language only,(and guesswork!! lol)Gastrostomy fed, and the happiest little boy in the world!



Would like to talk with other mums also facing any of these issues.

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Eliabeth - posted on 02/19/2009

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Hi Katie, nice to meet you, Unfortunatly Adam has no bodily control at all, he has no real use of his hands so can't sign, we did use cards to make choices from 2 options by eye pointing but he had a stroke in 2007, and suffered additional brain damage, so this is now very 'hit and miss' Physically Adam is like a 4-6wk baby, he has no real head control, can't sit, ect, he also has hearing loss, Auditory Neuropathy, Nystagmus,  has no central vision, and is severly short sighted, i have seen some children use the eye pointing to carers hands, for yes and no, and was blown away by the idea, we have tried Adam with this, as it would mean he can really tell me what he wants, but not sure if he fully understands what yes and no mean, am gonna persevere with it though, him making choices is so very important.



We have done switch work with him and he was doing well with them, until the stroke, so can't use his hands to do switches anymore, but he can use his chin and mouth so are gonna work with his school about different options

Katie - posted on 01/30/2009

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Hi Elizabeth, i'm Katie and I have a stepson who is 16 and has CP and has hydrocephulas w/VP shunt. He is considered nonverbal and functions around a 3yr level. Very happy though!!! My other son has Spina Bifida and Hydrocephalus w/VP shunt. He too is delayed to about 5-6yrs though he is 12yrs old. He use to be tube fed but was able to out grow the need. I totally get the gues work about what theyn are trying to say. I've been Jon's stepmom for 5.5yrs and we have worked out a system. He's quite visual. His parents didn't know that. THey tried things or just assume he was happy and didn't have a say. BUt were they wrong. He looks for his choices visually. Yes is one hand and No is the other. I've made flash cards to take w/ us to known places for possible known responses. Both my boys have vision issues and no hearing one. IS Adam able to manipulate a chair?

Meredith - posted on 01/30/2009

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Wow, what a neat way to see your children's blessings!  My husband and I considered special needs adoption for a time but felt we weren't "ready".  Then our bio daughter's Dx w. Down syndrome was our 'yes' that we were ready.  God led us to a 5 yr old 'high functioning' little girl in Ukraine and when we got there she had been transferred to a mental institution already and was unavailable for adoption.  So we quickly turned around and had known about 'Emma' and knew she was soon to be transferred as well and with her medical conditions in addition to Ds, she wouldn't survive.  So God brought us down this road gradually as well :)  Emma and our 'surprise' Micah (he was at the same orphanage so we adopted them both) are such blessings to us :)  I keep a regular blog with our daily happenings if you'd like to peek, www.cornishadoptionjourney.blogspot.com

Eliabeth - posted on 01/30/2009

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Hi Meredith, Adam is my youngest, i have four children, David, aged 18, who has no medical issues,Danielle aged 16, who has bladder incontinence, she has had 3 lots of botox applied surgically to help 'stretch' her bladder as it was 1 3rd the size it should have been, the botox did help, her bladder is now normal sized, but the botox has caused permanant nerve damage, so now she can't empty properly,



My third child, Dylan aged 13, has dyspraxia and is within the autistic spectrun, then i have Adam.



I believe God gave me David, to see what type of mother i could be, then gave me Danielle, to see if i could cope with medical problems, then gave me Dylan, to test my patience, before God decided i had done a good job, and rewarded me with Adam, my forever baby boy :D



Thanks for your message, would be nice to hear from you again :D



 

Meredith - posted on 01/29/2009

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Hi there, I don't have nearly the list but I can relate to a few.  I have 3 children w/ Down syndrome one of whom also has CP.  She's non verbal, non ambulatory, was oxygen dependent, has nystagmus (as well as strabismus and near sighted), communicates through crying pretty much, she has severe pulmonary hypertension after a successful (but risky) repair of a huge heart defect at 5 years old.   We adopted her from overseas about a year ago and she was 17lbs at 5 years old, unable to hold her head up, make eye contact much, or do very much else.  She has made great gains and is now sitting, standing with leg and ankle braces, and coming through things we never thought possible.



Again, it's a different situation, but shares a few similarities.



One of my other children w/ Ds also had a g-tube for a while so we've been that road too.



You are the perfect mom for that little guy I can see by the end of your description "happiest little boy in the world!"  Isn't that what matters most? :)  I have 4 children (and one on the way) , two bio and two adopted and they are all the most wonderful blessings!

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