Hello all wonderful parents out there in the world!

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Latest reply from Brianna

(4 posts) (4 people)

Hello all wonderful parents out there in the world!

Posted 5 months ago by LilleThea

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LilleThea said 5 months ago

Our little prodigy was born April 12, 2011. She was then, as now the world's most beautiful baby. At 2.5 months age began our doctor to suspect that something was wrong since the growth was very late and the development was slow, we decided to test out different things to figure this out, 1 week after we got the phone ... ... we had to go to the hospital for something was wrong. We got besjed on WHS ..... this was very rare to doctors had never been touched like. We went home with a slight swelling fears about what it really was ...... yes, we had 100 questions nobody could answer :-( Time has passed and we learn every day with Thea, she stands firm on eplepsimedisiner, feeding tube, heart failure.
I wonder a lot what follow up you have? How much training you with the kids?
Do you have some good advice What has helped you? how was the development at 8 months old age?

Thanks a lot for your reply :-)
Looking forward to getting to know you :-)
History
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M said 5 months ago

Hi there,

My Isabella at 8 months was eating puréed foods, rolling slowly from belly to back one way, reaching for toys, sitting with support. Her development slowed down during the 6-8 month mark because that's when she started having seizures. Her weight was around 7something kgs for those few months.
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Myriam said 4 months ago

Hi!
At 8 months, my daugther was a little baby!!! Her weight was a bit more than 4kg and her lenght was around 60cm. She was feed by her g-tube and was refusing cereals most of the time. She was laying on her back most of the time, unable to roll. Ève started to hold her head only at one year old. She started to stand in a sitting position at 2, started to sit by herself at 3 and crawled at 3 and a half. She never crept because she hated do stay in this position. She was more comfortable on her back and did a kind of backcreeping for a long time. She has one hour of therapy each week since she is 2, getting stronger and stand-up by herself now. We also have two hours of stimulation each week to developped her abilities. It's true that sometimes its long before getting any progress but they are still constant. Each baby is different. Each child has his own personnality. You have to get to know yours and try to follow her capacity and answer to her needs when it is possible to. There is no recipe but trust yourself because you know your child better than anyone else!
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Brianna said 4 months ago

Welcome. My Arin was born on March 21 so is just a little older and she has 12 different doctors with the top ones being neurology; gastroentrology; pediatrican; cardiology we also have neurosurgery; orthopedics; nephrology; general surgery; ENT; eye doc;urology and nutrition. She can currently hold her head up and smiles at people. We have PT, OT and Speech/Feeding once a week for an hour and Deaf/Blind services twice a week for an hour each time. She has 21 different diagnoses at last count. She has Cortical Vision impairment and mild to moderate hearing loss, an ASD and pulmonary stenosis in the heart, echogenic kidneys; hypotonic; develolpmentally delayed; a tethered spinal cord; and only eats via a G tube. She gets no liquids by mouth due to the aspiration risk and we are working on her to eat stage 2 baby foods but she really does not like it and will gag and choke on it. She is currently weighing in at 12lbs 11oz or about 5.6kg

Each child with WHS is different but if you ever want to talk I am on Facebook Brianna Hornehy-Hauck and my email is briannahauck@yahoo.com. Feel free to contact me at any time. I do not work so am always available.

Brianna