Any Cerebral Palsy parents out there :)

[essie0828]

Go Mom! And go lil man! Thats good news about his speech. I worry about Hayleys speech a lot. She's understanding more and responding to requests but not making a lot of new sounds. I'm afraid she will always have a learning disability and that she may not catch up. All we can do is try and pray I suppose. Spoke to her PT today and she is going to get us a stroller No cost to us as its a loaner program, we just return it when she out grows it. We will be hiking by next week.

 

[essie0828]

My DH has terrible vision and strong prescription glasses, so far DD has been able to avoid them but her eyes are still a bit off. Her right one turns in and out on a whim. Patches help to strengthen the muscles though.

 

[lilesMom]

It's tough not to know how our los will be later
But like u say we can only do our best, keep our fingers crossed ad pray xxx
So far so good speech wise for Simon
But where his stroke was puts him at risk
They said no guarantees he wouldn't have trouble later on cos of it
Hopefully not ;-)
Hayley and Simon will hopefully keep getting better speech wise. Xxx

Yeah I don't mind getting glasses
Def better to know anyway ;-)
I feel bad cos I cancelled his last eye app cos he was in the middle of the seizures.
But it may not have been apparent then anyway
Last 2 checks I was told it was fine but a squint.
Might be a more recent thing.

Hope all's well xxx
Is it just essie and me left here?
Love to all anyway :-D

 

[Clea_Lerman]

I don't have children yet, but I know what CP is, because I also have it. I spent my childhood in different clinics. I'm still not good in walking and need somebody's help, but I graduated from school with a gold medal and studied linguistic at the university. Faith and love can do everything! Good luck!

 

[lilesMom]

Thanks clea xxx

 

[essie0828]

Hey ladies

How's little Simon doing? And mom?

Clea thank you.

 

[lilesMom]

Hi hon.
How ye doin Xx
We,r ok.
Still,feeding issues.
His appetite has seriously gone.
I'm getting frustrated and running out of ideas.
Sorry I'm a bit grumpy today.
Hope ye r well xxx

 

[essie0828]

We are having feeding issues to. Having to supplement with liquid nutritional shakes a lot lately. She was doing great last week and now she's barely eating solids. Just nibbling then drinking most of her calories in milk or shakes. I think it's related to her ears. How bout Simon? Is he taking his milk still or is he refusing everything? Maybe constipation related? I hope y'all get it worked out. It's so frustrating for a mom when her kiddo refuses to eat, drives me crazy with worry. It's ok to be grumpy dear Everyone gets overloaded and cranky sometimes. I hope things lighten up for you soon.

Had a great time yesterday with kiddo and fireworks. She LOVED them! We were afraid the loud noise would scare her but nope, she was amazed. She put her little hands up on her cheeks, mouth wide open and watched every second. We brought a bunch home for her. And when I say her I mean me and my husband of course We were outside late setting them off with her watching from inside her little truck. She had a blast pushing her little truck around rows of sparklers stuck in the ground, those were her favorite.

 

[lilesMom]

Aw ur day soyndslovely Xx
Sorry ur having feeding issues too
It is very worrying
It was constipation which worsened reflux
I asked foe losec for 2 months.
Finally got it and he is improving away now again. Thank God
We had meeting with consultant tues
She dismissed me and my ideas completely
I was cranky since and questioning myself.
She sent me her report on the meeting yest
It was all mistakes and or lies.
Um not sure if accident or she didn't listen
I sent back a letter today and I feel better now
Its out of my system and into the post box :-D
Our play therapist called yest
She said she had been told the Doc was very hard on me
She said trust my instincts :-D
She advised writing the letter
She was so right. It took away a big weight
That and milky tot is starting to eat again
Its been goin on since Feb, He had lost a kg slowly.
2 weeks on losec and already huge improvement
Hurray xxx
I can go back to calm me again.

How is everything going with u hon xxx

Not sure who.is still here but hey ladies
Hope all's well Xx

 

[essie0828]

Aww hun doctors can be arseholes Im glad he's doing better now. I've been in the same situation a few times. I have a doc now that values my input and is awesome. I have reminded them before that even though im not a doc I've had thousands of hours in the school of Hayley and I know when something isn't right. You did the right thing. Some docs haven't had a lot of experience with CP kiddos. Statistics are 2 in 1000 kiddos have cp....so how can they have enough experience if they only see a few thousand patients? Constipation and reflux are so common with cp as well as epilepsy. My cousins son has epilepsy and has problems with reflux, he takes the same drug Simon does now. It's helped him tremendously. This child hadn't gained weight for 6months and it took a fit that nearly killed him for docs to take my cousin seriously. Keep your head up hun, it's hard to trust yourself but you know him best and you've had more experience with cp in the last year than most regular docs will have in a career.

 

[lilesMom]

Thanks hon xxx
I feel miles better now Simon is doing better
How's hayley doing
And u of course xxx

 

[essie0828]

We're doing pretty good. Struggling some with feeding. Seeing the ENT specialist tomorrow morning to make sure her tubes are functional. She's been rubbing her ears and putting her z vibe in the very back corners of her mouth and chewing loads. Thats her way of making her ears feel better. She's lost some weight since February as well. Almost a whole kg. She has grown taller in that time to and it makes her look thin. With her height and feeding issues, it's a constant struggle to keep her above the underweight category. Just today she has started refusing her bottles and that sends me scrambling to get fluids in her. She's pretty good with a straw but only drinks small amounts with them. I have even resorted to squirting water in her mouth with a spray bottle because she thinks it's funny and will swallow most of the water. Mostly she refuses, even soda, caffeine free of course, but I mean come on every kid is supposed to love soda. I really hope the ENT can shed some light on this. If not, her regular doc will be in the same building, we will go see her. We have been working closely with her OT on the feeding issues for over a month now with progress followed by setbacks. This is leading me to think it's related to her ears again. I wish she could just tell me her ears hurt She's so stinking tough. Fingers crossed tomorrow brings a solution.

 

[lilesMom]

Hugs hon
Hope they figure it out
It's so tough to watch them struggle xxx
Go with ur gut
If u think it's ears, I'd bet money ur right xxx
Fx they can sort something for her
It gets so frustrating trying yo persuade them yo eat and drink
Xxx

 

[essie0828]

Good news from the ENT specialist. Tubes are in and functional although one had to be unblocked and they had to remove quite a bit of wax. She's eating better today after a huge hard poo. She was constipated and stopped eating, again. Constipation is hard to manage with DD as well. We've had better luck than some but it still rears its ugly head quite often. I try to manage it with fiber supplements and some sweet drinks, that works most of the time but we have to use laxatives some. When DD was Simons age we had to rely heavily on laxatives. We kinda joked that we had to feed the baby, burp the baby and poop the baby. We would have to use liquid glycerine suppositories almost every bowel movement. Looking back it's a classic sign of cp, but the doctors didn't seem concerned. They just told me to give her miralax.

She's ate chicken soup and bacon today already, wanted that for breakfast Makes my heart warm I love the days I get to cook and feed her good stuff

 

[lilesMom]

That's fab.
On both counts xxx
U wouldn't realise how bad ur stress levels were till they start to eat again xxx
her food sounds yummy
Simon Stoll has low dose laxative every day
Just to make sire he stays unblocked :-D
That's great ur little cutie is better.
Docs are same here, take no notice really of the constipation
It effects them soo much, we def notice it

 

[essie0828]

Lol, that's true! I feel like I can breathe today. She's still a little behind on fluids but I have a plan for catching up after nap. Surely the bacon will work in my favor by then. She did good in PT today We're trying to get her to bend over when standing and put her hands on the ground and stand back up. This will eventually lead to her being able to bring herself to a standing position without pulling up on something. She's able to bend and recover very nicely but is still choosing to pull to stand when she can. Im excited. Btw I have stickers and play dough and bubbles all over my floors from having her bending over to play It was so fun though

 

[lilesMom]

Wow she is going so well Xx
Go hayley xxx
Not much news here really
Quiet again thank God.
We are glad for non eventful after last few months

 

[essie0828]

Hey lilesmum

Hows Simon doing? Hopefully he's doing good and things continue to be calm.

DD had part of her year assessment from early intervention today. She was a being quite stubborn and refusing to try most of the tests. Turns out she really needed to poo The therapist was really nice about it and said she would come back and reassess her when she wasn't quite as distracted Poor thing was really workin hard on pooping and wanted no part of our games. I really don't blame her

 

[lilesMom]

Hey :-D
Poor hayley :-D they must get so sick of us and our,well meaning therapies :-D
All for their good though.
Simon's physio is always asking is he a cranky guy
He is the total opposite, it's hard to tell her it's just when he sees her :-D
Its still calm here
Feel q little at a stand still even though I know he is doing fine
Progresd is just slow. :-D
But progress is progress :-D
How r u keeping xxx

 

[essie0828]

Ha! Hayley first PT was like that. Thinking it was kiddos natural disposition to be grumpy, lol hard to tell em its just when they show up.

Glad to hear lil man is doing well. A stall in progress is normal. Regression not so much, but I have seen DD stall out for a few months. Then bam! All kinds of new development. Simon is probably doing the same. How's his seizures?

Things are going pretty good for us. Therapy full blast and kiddo is walking so much better. I can hold her hand and we can go check the mail. Granted it takes a while and her gait is no where near perfect but it's a dream come true. Keeping her from falling is a full time job, and I accidentally dumped her over on her head at the rehab hospital. It was just before therapy and the poor thing cried forever. She had a little knot on her eyebrow ridge and cheekbone I got upset and cried right with her In front of the whole place. I dread going back out of embarrassment