What a week, and yes I know it is only Wed!!
Celia has had the flu. ALL better now, but yesterday it hit me like a Mac truck!!!!!!
At the same time, I was getting calls from Denver. The NS has decided he wants Celia evaluated by more docs to help determine what is going on with her. I am laying money on tethered cord but what do I know.?!?!
SO we are off to Denver next week. I am dreading it!! It is so hard to tear down all of her equipment, load it in the van, load her and the wheelchair in and out of the car 15 times during the 6 hour drive there, unload and re-set up everything at the hotel, sleep in a bed that is not ours, time change, appt.'s and again lifting Celia in and out of the van and then lifting the wheelchair in and out of the van a jillion more times,,turn around and do it all again to come home!!!
Anyway, off we go, gotta do what ya gotta do. I will update as often as possible.
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Gretch
I am a SAHM of 3 girls.
Heather is 20 and lives in Colby.
Aimee is 17. She is artistic and has a great sense of humor!!
Celia is 12. She is energetic, inquisitive, and full of life!! Celia was born with Dandy-Walker Syndrome and a host of anomalies. She has a trach and is all G-Tube fed. She also has a cleft palate(finally repaired at 9 yo!), t-tubes, asd and left pulminary arterial stenosis, aspiration, reflux, fundo, npo, dysphagia, kidney defect, neurogenic bladder, spina bifida, scoliosis, seizures, low imperforate anus, hip dysplasia, sensory issues, ADHD, vasomotor rhinitis, autistic like behaviors, hearing aides.
This blog is to keep in touch with everyone and keep everyone updated on the girls.
Heather is 20 and lives in Colby.
Aimee is 17. She is artistic and has a great sense of humor!!
Celia is 12. She is energetic, inquisitive, and full of life!! Celia was born with Dandy-Walker Syndrome and a host of anomalies. She has a trach and is all G-Tube fed. She also has a cleft palate(finally repaired at 9 yo!), t-tubes, asd and left pulminary arterial stenosis, aspiration, reflux, fundo, npo, dysphagia, kidney defect, neurogenic bladder, spina bifida, scoliosis, seizures, low imperforate anus, hip dysplasia, sensory issues, ADHD, vasomotor rhinitis, autistic like behaviors, hearing aides.
This blog is to keep in touch with everyone and keep everyone updated on the girls.
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1 comment:
I like the new blog with the polka dots and green bows.
Good luck. I hope the trip isn't too hard on you and you get some answers. Will be thinking of you.
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