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Any Cerebral Palsy parents out there :)

Yup we are, our family have 2 little ones.

Hi there! Welcome!

So you have 2 kiddos with cp? What are their ages? Welcome again to our little group, feel free to share about your family anytime. Or ask any questions you would like :flower:
 
Hve to go back and get heel lock for afo
He keeps kicking um off

Glad hayley is starting yo feel better x
Horrible thing to have.
Totally exhausts them x
I'm up in middle of night
Had yo take s for a drive to calm him
His tummy is sick
Wind pains r killing him

Hope Thursday goes well hon
I hate how they make us wait for something so important
Xxx
 
Aww poor little man. Hayley had wind pains a lot, still does but she has learned to wiggle and move until it passes. Shes too cute doing it to, she will whine a little and bounce around for a second, then boom! Sounds like a grown man passing gas. Shes starting to blow raspberries afterwards and giggle. Love it. Its hard on them when they cant move around as much to work it out. The gas drops never worked for us either.
We are waiting on toe straps for Hayleys braces. Thats the thing with afos, they need adjusting quite a lot. Hayley is walking so much better now with her new ones. Back to walking 20 small wobbly steps on her own. All I have to do is open the front door and tell her if she walks out we will go. Buddy you would think she had been walking forever. She seems to be catching up really fast, at least catching up to where she was a few months ago. Even this croup thing seems to be passing faster than her other colds. I love seeing this but im worried about it as well. Shes coming along so fast that im afraid when she was so terribly sick in October that she was having a true neurological regression. Not just weak from illnesses. She had stopped walking and was having trouble with speech progressing. She just stalled. Just a few more days until I can actually speak face to face with a doc. Its harder for them to avoid my questions when im looking them in the eye. DH assures me I could have a future in interrogation ;)
 
Simons words are,all but gone,again due to being sick and fits
Has happened a few tines before
Its like he needs to be tiptop to learn.
Thought I was a bit crazy but obvs not since hayley us the same
Hope ur meeting goes well today
Waiting sucks.
Least it's here now
Mrs interrogator can get to work :-D
Xxx
 
Hi ladies,

Started the first round of genetic testing today. They took 5 vials of blood from DD, poor girl screamed and cried. We wont have results for at least 4 weeks. Her MRI showed mild to moderate demylenation in her frontal lobes. Also some periventricular white matter loss and demylenation, mild to moderate. The most significant white matter loss and demylenation seems to be developmental or possibly genetic. We still dont know if this is a progressive thing or not.
 
Praying it's not progressive hon Xx
Huge hugs xxx
Must be so,worrying xxx
 
Hi everyone :hi:

Hope everyone is having a good time preparing for the holidays. :) Still have some gifts to prepare but mostly done. Have been smoking spices to give as gifts along with vanilla I made. Smoked salt, sugar, paprika, and chili powder. The smell is amazing. DH says its like bottling fire ;) Love to all and Merry Christmas!
 
Merry Christmas Everyone! Hope your holidays are going great :hugs:
 
Munchkin is sick,again
Boo hiss
Chest and esrcinfection and croup
On antibiotics,and steroids
Hope they work fast
How ye doin xxx
 
Aww poor little man. :hugs: I hope the meds work soon. We are looking at having to do IV antibiotics for Hayley. On Christmas DH lifted her up into a ceiling fan on accident at my grandmas. Old house, short ceilings, plus tall people equals disaster. Well she got popped right in the eye and now has an infected eyelid. Post again soon.
 
Was at her regular doc today and they talked about admitting her but gave me the option to take her home and give her this really strong oral antibiotic then bring her back in tomorrow prepared to be admitted if it hasnt improved.
 
Ouch, there must hve been lots of tears!!!!
Hope oral antibiotic works xxx
 
My poor mouse is so miserable and cranky.
Feel bad for him, wish time would fast forward to both h and s being better

Mummy 3 r u ok?
R u gone?
Hopefully just busy xxx
 
Aww hun that's so sad. Its so hard to see them suffer. I hope he feels better fast. :hugs: for both of y'all.

We are in hospital, IV is set and we are waiting on a room to start the antibiotics. They mentioned we may be here 2days. :( I would rather spend New Years at home.
 
Aw hugs honey xxx
Hope hayley is better fast xxx

My mom is in hosp too.
Her heart again
Can't visit cos munchkin too sick.

Crappy time if year for hosp
Not that there is ever a good time xxx
Hugs Xx
 
We are out of hospital and home. Hayley responded well to the antibiotics and her poor little eye is back to normal. She is walking so much now, always holding one of my fingers, but can walk almost anywhere now. Stairs are still a challenge but she goes up them with help. Its almost like because she was late walking she's making up for lost time, lol. For that im thankful.

Well someone stole my benefits card when we were in hospital and cleaned out the account. Its Hayleys disability benefits. What heartless, POS could steal from disabled kids in a childrens hospital during the holidays of all times. Thats a new level of low. The money was spent in California in less than 24 hours. Before i even noticed the card gone from my wallet.
 
Thankfully DH has a decent job and we use that for extra things for hayley. But it really makes me so mad. Theres little chance of getting the money back to. Lol, Happy new year. Thieves SUCK!
 
Aw man,
What scum to do that
Lowest of the low
They will hve no luck
Any hope of getting it back at all?
Hops ye can.
I used to work in a hospital
A porter got fired for robbing patients bags
Complain to the hospital if u haven't already hon
Glad hayley is doing well xxx
I can't until Simon walks :-D
He is allergic to standing at the mo
 

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