Any Cerebral Palsy parents out there :)

[essie0828]

Doing much better. Been cleared by doc to resume most normal activities and am trying to keep my mind busy. Was told at the followup with my OB that I had suffered a MMC approx 2 weeks before I was admitted into the hospital and that had caused an infection in my uterus. That complicated the surgery and that was the reason for the extra procedures. They had to make sure the infection didn't spread to other organs. Having to take massive doses of antibiotics but off the pain meds that make me feel like a zombie. Thankful for that. DH goes back to work today and I am solo with DD. Kinda looking forward to it, I've missed being her primary care giver. She has gotten to watch way too much tv over the last week so I have a full day planned for us after her PT. Weather is going to be nice today

Has Simon started eating better? I hope the lil guy gets back to it soon. It's worrysome when they don't eat properly. I still fret over how DD eats. I've heard a million times, people say that she will eat when she's hungry and she won't starve herself but with Hayley that just isn't true. She still goes off food sometimes and we have to resort to bottle feeding her. Most days are good though and we get closer and closer to getting rid of the bottles everyday.

Nearlythere, still thinking of you and your family Hoping that you are starting to find your way after loosing Ava. It's ok to not be ok sometimes hun

 

[lilesMom]

Glad ur feeling a bit better hon Xx
U needed rest but I would def feel weird if dad was minding Simon too ;-)
I'm sure she be glad to have u back with her xxx
Hugs again X
So sorry about mmc. I had one before Simon too.
Really tough on u xxx
dead right to focus on beautifull hayley xxx

Simon I'd still off food.
Did eat once today which is big improvement ;-)
They are talking about motilium for him but I'm reluctant
Ye ever try it?
They also said maybe try neocate
Kinda tempted to try for few weeks
But milk is all he will have at no so don't wanna ruin that

Hope u can get off anti b soon
They do wreck u xxx
Love to hayley too x

 

[essie0828]

Hi ladies. It's been a while since I've posted, I hope everyone is doing ok.

Lilesmum, how's lil Simon doing with eating now? Did you try the motilium or neocate? We never tried the motilium but we did try formulas similar to neocate with some success. And we ended up doing formula longer than most. The switch to a new formula can be a little rough sometimes and I know what you mean by not wanting to ruin it for him since that's what he eats most. But it got us through some of the worst patches of reflux and tummy issues. Hayleys little cousin was hospitalized last week, he's 11 weeks younger than her and was diagnosed as having seizures. He has the kind where he just goes limp and tries to stop breathing. His mom co sleeps and he stopped breathing while they were all in bed and she had to do cpr on him. Terrified her and the family. She was convinced he would have died if he wasn't in bed with her. He's also been diagnosed with developmental delay and will start therapies soon. Its a bit of a shock. Been a crazy few weeks.

Hayley is getting better at walking but will still try to knee walk at any chance. If I can keep her up on her feet and motivated she can walk about 50 m. Sometimes less, sometimes more and she's very slow but she's getting better. We ditched the kaye walker and are making her walk without holding a fixed object. She does lots better if we give her a small toy to pack though. Her trunk rotation is getting better and some of her fine motor skills are improving. She's also been saying "HI" to people She doesn't talk much at all so we are excited about that along with her following directions in pretend play. She loves feeding her bears and dolls with her play kitchen set. She will get a spoon and a bowl and pretend to stir and give bites to a doll or me. She will also pretend to pour a drink in a little tea set and give drinks to everyone. Its super cute. Caught her poking the cat in the face with a plastic spoon the other day trying to feed the cat. The cat was not impressed and found another spot to nap.

 

[lilesMom]

Heygood to see u back.
Up post properly tomorrow.
Lil mans bday today and I'm wrecked!! Xxx

 

[essie0828]

HAPPY BIRTHDAY LIL MAN! Hope y'all had a wonderful time. Hard to believe he's 1 already.

 

[lilesMom]

Thanks xxx
I know the big 1 already ;-)
My lil boy now instead of baby ;-)
Glad hayley is coming on so well
Its so great to see progress Xx
She is super cute ;-)
That's awfull about her cousin
Thsnk God they were co sleepingI still have Simon co sleep
It feels safer between seizures and choking from reflux
Least her cousin will get proper help and meds now
Xxx
Simon is still dodgy with food but some improvement yest and today
Upped his laxative
I had reduced it cos I thought his nappies were runny
But dietician reckons it's a sign of worse constipation and it's overflow diarrhoea
That was only yest and he seems more settled
Still no nappy though
He is doing well though.
Virtually no seizures thank God
In good form
Stays in standerhappily for 40 mins
Can sit now but will throw himself back something sometimes
Using his right hand more
We are waiting for his play therapist Moshe calls to house once every 2 week
For 6 visits.
I'm doing a course about how to help his speech along
Which is great.
Not much more going on really ;-)
Hope it recovering well essie xxx

 

[lilesMom]

Nearly there I'm not sure if u still read
But if u are just want to let u know I'm thinking of u xxx
Hope it holding up ok hon xxx

 

[waiting2c]

Hey ladies - decided to check out this board on BNB. Have a nearly 2 year old son who was diagnosed with Polymicrogyria a week after he was born. This is a brain malformation that means he grew too many braincells and in the wrong places. An offshoot diagnosis from this is *******, dystonic quadraplegic CP, been a devasting couple of years for us but he is the most gorgeous boy and has a winning smile. He cant sit, or stand and will probably never be able to do these things. He tries so hard to move his arms where he wants them to be able to play but it all just comes harder for him. Just would like to get in touch with other cp parents really and see how things go/can go.

 

[lilesMom]

Welcome hon
It 's nice to be able to chat here to people who understand xx
My lo is just one.
He had a stroke on day one
He has right sided hemiparesis and epilepsy and horrible reflux from low tone
He is a fab little guy
I love him to bits.
He is my only child.
He can sit now.
And has a stander to build up ststrength.
He has lots of therapies and help since very start
Which is great but can be tiring
I'm very grateful for it and him ;-)
Cp varies so much from one kid to another
But we still can identify with each other I thunk.
Glad u found us xxx

 

[lilesMom]

Just saw ur ticker.
Congrats on pregnancy. Xx

Hey to all xxx

Essie how ye doin?

 

[essie0828]

Welcome waiting2c it's good to talk to other parents of children with cp from time to time.

Hi lilesmum We're doing mostly good here. Kiddo has her days and nights mixed up and keeping a routine has been almost impossible. Hoping that the next few busy days will wear her out and reset her bedtimes. She's been waking up around 1am every night and staying awake till past 6. Then wanting to sleep through her therapy times. It's causing her to be moody and show off some of those toddler tantrums. Tomorrow we will be traveling and doing therapy most of the day and I dread it some. Maybe she will sleep better tonight.

 

[lilesMom]

Simon has patches of that too.
Its terrible. Usually teeth are the cause here
Would nt be not too bad if no appointments
Cos u could catch a snooze in the,day.
Hopefully she will get back to routine,soon
Often a really tiring day can sort it.
Things are better here.
Seizures nearly gone.
He is eating good bits again
Therapies are going well.
Xxx

 

[essie0828]

Glad to hear lil man is doing well with his eating and no seizures, wahoo!

Hayley hasn't been eating very well but is starting to come around a little. She has had an odd couple weeks of not sleeping or eating well. She has all her teeth now so I'm puzzled. She seems to be growing, but I haven't measured her. Everyone is saying that she's getting taller so a growth spurt may be the cause. She's tall as a 4 year old now. Makes her delays more noticable unfortunately. Everyone thinks she's older and they expect her to carry on a conversation but she can't yet. I have to explain a lot. But I'm lucky she's growing so well despite feeding issues.

 

[lilesMom]

That's funny Simon is in 3 yr old clothes.
He put on a teeny bit of weight even when he wasn't eating.
He wasn't having loads of milk either so I don't know how he managed it
Doing New things makes um wakey too.
Maybe it's cos she is walking more? Xx
or could be hunger but unable to eat
I had to triple simon laxative dose.
Poor guy was blocked.
He wad having loose nappies so I had reduced it
Turns out it was overflow diarrhoea around a block
No wonder he couldn't eat.
I was following what docs told me but still feel bad ;-)

 

[lilesMom]

I keep getting the, oh is he walking qs.
I say no.
Then I get oh still crawling.
I say no.
Then I get the weird look that means one of two things
They think.something is wrong and um clueless
Or I'm a bad Mom who keeps him sitting in buggy
If it's someone I know I'll explain
But I've given up on strangers ;-)
I'd I explain it either makes um feel awfull for asking
Or I get stupid platitudes or lots more qs
So I tend to not bother ;-)

 

[nearlythere38]

thank you for still thinking of me. i am not doing very well if im being honest. i miss Ava so much, its a physical pain. it still feels very much surreal, has this past year actually happened?!?!

i dont think i will be coming on here anymore. painful reminders in every way. but i would like to say thank you for your support, and i wish you all the very best and that you and your beautiful bubbas have health & happiness xxxx

 

[lilesMom]

Hugs hon.
I totally understand why u wouldn't want to be on here xxx
I have no words to do ur pain justice hon
I really feel for u and,would love to be able to help xxx
If u ever need to chat, vent or rant
Please feel free to come back here or pm me xxx
Giant hugs xxx

 

[essie0828]

nearly. I cant even say how sorry I am for your loss. We will be here if you ever need to get a few words out. And we will always remember you and lil Ava.

 

[essie0828]

Hi ladies

How are the kiddos?

Hayley is on antibiotics again. Another sinus infection and fluid on her ears. She has tubes in her ears so there shouldn't be fluid, have to go see the ENT specialist to make sure tubes are not blocked. She's still having trouble sleeping and is a little off balance but she's coming around. Shes eating better and blabbing more. Good signs. I have been looking for a nice stroller and ordered the Joovy Zoom 360 but when I received it, despite the company claiming that their stroller would fit a child up to 75lbs, DD is too tall for it. She only weighs 29lbs! Total hassle. I'm so disappoined to, its a beautiful stroller . So now we're stuck. I think we maybe able to get a special needs stroller with her insurance but I'm not sure. If insurance won't pay we are gonna have to fork over 600 $. On top of the 270 $ I just spent on a stroller that won't work. Grrr. I really want to take her hiking but she can't walk very far. I'd love to find a carrier to fit her to. I could piggy back her on lots of trails. DH and I did lots of hiking and camping before kiddo was born and I want to share that with her. Any suggestions? Btw did anyone see the america n news story about a 14yo who carried his 7 yo little brother (who has cp) 40 miles to raise awareness for cp? Its a beautiful story. He was able to raise money to get a handicap accessable playground for his little brothers school. He also wanted to raise awareness about adaptive equiptment and encourage new designs to help kiddos with cp. Oi what a wonderful thing.

 

[lilesMom]

Aw that's lovely of the 2 bros getting the play ground.
I don't know on stroller hon
We have the little nipper , out n about buggy
recommended by his ot
Not sure if it would be tall enough for her though
Nice light buggy :-D
Hope u get sorted xxx

Lil man is getting glasses.
H has moderately high astigmatism and is short sighted.
We had video critique with speech and Lang course yest.
2therapists were there.
They said their only advice is keep doing what I'm doing cos it's perfect ;-)
Proud mom ;-)
Getting him a smart trike soon
He will love it ;-)