Any Cerebral Palsy parents out there :)

[lilesMom]

I like them most of the time too but after our recent hospital stay.
I love days we get to stay home and play ;-)
Simon has come on in bursts with his therapies.
Il think he stays same fir a bit and then all of a sudden something clicks and starts working fir him.
Its great to see.
Ava will come on loads too hon.
She is soo cute in her pics ;-) xx

I'm majorly broody today.
Common.sense is trying to desert me.
I wanna TTC now!!
Shut up hormones ;-)

 

[lilesMom]

Just wondering when or if ye hve lo in own room.
No plans of the sort yet but just wondering ;-)

 

[nearlythere38]

Aww when r u planning on ttc???

Ive just decorated avas room, its beautiful. But i cant bare to let her go i yet. So ive moved her from a crib to cotbed at the side of me.

The paed phoned me today saying avas urine retest was ok. But that theyve all had a meeting about her this morni g, doctors, physio, OT etc. And they want her to be referred to a neurologist for further brain tests. Im really confused by why. I think they have a suspicion of something

 

[lilesMom]

Thats where Simon sleeps too or in our bed ;-)
I'm gonna wait till Simon is 1 I think.
Gonna focus on Simon and losing weight till then.


Maybe they just wanna be sure they don't miss something ?
But ur gut is usually right x
There has to be a reason for her seizures and delay.
I'm sure they r just being thorough to find reason.
Bwtter to do all tests in case ava needs somemedical help.
But they r most likely just playing safe xxx
It's tough to be in the middle of it all though xx
Ye will come out the other end too hon. Xx

Essie how u do?

Hey to all xxx

 

[nearlythere38]

Hey all, hope we are all well

Ava had her hearing test at the hospital this morning and pretty much failed. Firstly they used the same technique as they do at birth, they got a clear response from her right ear but none from the left. Then they played a variety of pitched noises at either side of her head to entice her to look but she didnt. Then one lady sat in front of her with a toy for a few minutes while the other one shouted very loudly to try and elicit a startle, and she didnt flinch at all....the next step is for her to be put under general anaesthetic for some much more detailed tests to try and establish what, if anything, she can hear.

Its just one thing after another :'-(

 

[lilesMom]

Aw hugs honey. Xxx
Does she respond to ur voice?
Or ur play on either side? Hopefully it's one sided and she can hear ?
Xxxhugs hon.

Simon is going to hve his eyes checked tomoro.
His vision is fine but he seems to hve a bit of eye motor problem.
So we will see what she says tomoro.
He also had to stop food again!!
Sucks .his reflux was worse and he was coughing
And choking.
Plus my liver is acting up again too.
Double sucky!!

But at this stage it can all f off ;-
Simon did a rolltonight and is in great form again.

to all xx

 

[essie0828]

Hiya shes good thank you. Shes been started on sodium valproate for the seizures but starting on a low dose and to increase over the next 8 weeks. Ive seen a slight reduction in the frequency but they havent stopped.

She has a sleep EEG on thursday. Her MRI results cane back grossly normal which is great so we can rule out cerebral palsy now. There was something suggestive of a metabolic disorder on the mri, and her urine metabolic screen was abnormal. Thryve retested it and i am currently awaiting the results of that.

Were innundated with appointments lately. There is something every day almost, physio, ot etc. Hard to keep track of it all!!

I hope you and your lovely little ones are well xx

Oh my, you poor dear, you are in the thick of it. Glad to hear that her MRI was normal. Do you think they are suspecting a pituitary disorder? That usually causes rapid growth, but I don't know how that would tie into her developmental delays. I hope you get some answers soon. The appointments tapered off for us after we finallyhad a diagnosis. I'm sorry to hear that she failed her hearing test. Does she have fluid on her ears? Tubes? My kiddo had troubles with fluid retention and ear infections. She also had almost no hearing on the right side but after getting tubes put in there was a vast improvement. One of the best things to happen to us besides the loads of therapy, pt, ot, and speech.

I am really dreading DDs MRI. I haven't even scheduled it but I am obsessing about it. I had a horrible about the results and it's paralyzing me with fear. Ugh! How silly is that!? In our case the MRI won't change anything medically, but it might legally.

Really hope the meds stop her seizures You're being an amazingly strong mama for your family. Wtg hun.

 

[essie0828]

Hi lilesmom

How's little squish doing? Reflux still acting up or has it passed? It would come and go with DD until eventually the episodes were fewer and farther spaced. Boo for liver troubles hun. Ouch. I have gallbladder problems and as minor as they are, it's still painful. Ha! Good to hear squishy man rolled over. That's awesome!

 

[lilesMom]

Hi hon. Xx
When is MRI. Did ye get a date. Xx
Simon is good but reflux is bad.
He had to stop food agaun.
He is still young though so we can wait.
Not much new here.
Eye person is referring him on but says all we can do is monitor him.

Xx to all

 

[lilesMom]

Hey
Simin haf his eeg today
It was much better.
Looks luje drugs are working
Hurray.
How is everyone
Xx

 

[nearlythere38]

Great about his eeg!! Bet you are relieved. Still not had results from avas recent eeg so guessing its normal.

Im a little stressed i wont lie! We has Ava's first genetics appointment yestrerday. The doctor told me that she has a syndrome in mind for Ava, but she wouldnt say what it was because she wasnt 100% and she needed to consult the literature and present ava to her colleagues in a meeting to see if they concur. Its a bit of a nightmare cos we have up to 6 weeks to wait now before finding out. She did say its rare

In terms of avas hearing im really unsure. Sometimez i think she hears me, but ivr been testing her a bit since thsn. I put the vacuum at the side of her head when she was looking thr other way and turned it on and she never moved or gave any sign of hearing it. I just dont know

 

[essie0828]

Great about his eeg!! Bet you are relieved. Still not had results from avas recent eeg so guessing its normal.

Im a little stressed i wont lie! We has Ava's first genetics appointment yestrerday. The doctor told me that she has a syndrome in mind for Ava, but she wouldnt say what it was because she wasnt 100% and she needed to consult the literature and present ava to her colleagues in a meeting to see if they concur. Its a bit of a nightmare cos we have up to 6 weeks to wait now before finding out. She did say its rare

In terms of avas hearing im really unsure. Sometimez i think she hears me, but ivr been testing her a bit since thsn. I put the vacuum at the side of her head when she was looking thr other way and turned it on and she never moved or gave any sign of hearing it. I just dont know

I hope they get back with you before 6 weeks. Waiting that long would drive me nuts. As for her hearing, where she is so young it's hard to tell exactly what she can hear. I hope she only has fluid on her ears and it can be treated easily. All you can do is take one day at a time hun. You have a right to be stressed.

 

[essie0828]

Hey
Simin haf his eeg today
It was much better.
Looks luje drugs are working
Hurray.
How is everyone
Xx

Yay! Glad he is taking to the new meds and the eeg was good. The new meds may make his reflux worse, that's probably why you've had to stop food for a while. Hope he gets a break from it soon.

Hayley has been accepted into a CP clinic at a large regional children's hospital in a neighboring state. It's the #3 children's hospital in the nation We go January 27th. Exactly one month before her 2nd birthday They will coordinate her care and will probably do the MRI shortly thereafter. We will see a neurologist, a CP pediatric specialist, an orthopedic specialist, a nutritionist, a physical therapist, an occupational therapist and a speech therapist. All at the same time! That's a little intimidating. Mama is going to have to study up and be prepared. :ha:

 

[lilesMom]

Nearly there. Yucky on 6 week wait but good hthey think they hve ananswet xxx
Try put it out of urind a bit. Impossible I know xxx

Essie that's fab news.
We had same for Simon at the centre he goes to.
I wad writing qs for about 2 weeks before it ;-)
Yeah I think it is tge new meds driving his reflux bananas.
Food was getting stuck then.
Fx it calms down for him.

No enews here xx

 

[lilesMom]

Sorry for typos. On phone and it deletes things if I try to correct ;-)

 

[essie0828]

Hi ladies

I hope everyone is doing well. We had a great holiday and Hayleys braces are here! She is already making heel to toe steps in them Her standing is so much better and honestly she helped me put them on this morning. I was so shocked when she offered me her feet when she saw the SMOs. I think she feels stable in them and she likes it. Soooooo incredibly excited! All I want for Christmas is to see my baby girl take those first steps.

 

[lilesMom]

Aw thats fab hon.
Fx u get ur brilliant xmas pressie xxx

 

[lilesMom]

Long time no post. ;-) how is everyone. X
Had neurologist app today.
Hyps arrhythmia on eeg is gone.
Drugs are working hurray .

 

[essie0828]

Long time no post. ;-) how is everyone. X
Had neurologist app today.
Hyps arrhythmia on eeg is gone.
Drugs are working hurray .

Awesome news! How has the little guy been doing? Reflux getting any better?

Hayley has a sinus infection and her bottom canine teeth are just poking through the gums. She's quite miserable and it's tantrums galore but the meds are helping and I think she will feel 100% soon. I'm wore out and my period is late was thinking we were careful enough not to catch. Took a cheap pregnancy test Tuesday and had a BFN..............stuck in limbo.

 

[lilesMom]

My phone sucks. Third tine typing this.
Hope she ua better soon x
I skipped 2 af before nd doc found no reason.
I wasn't preg. 4 bfn ;-)
Just skipped um.
Hope u get result u want xxx