Any Cerebral Palsy parents out there :)

[essie0828]

Nearlythere, sending prayers for little Ava and your family Give her kisses from me and tell her they flew from half way across the world on the wings of an angel.

 

[essie0828]

Hi ladies,

Still in hospital here, 3 weeks now. Ava is still having seizures, not responding to meds so far. Her MRI was abnormal, showed diffuse changes and slight shrinkage of the brain.

They are querying PEHO syndrome and storage disease. Waiting for various test results.

Unfortunately they have said that given Ava's clinical picture and deterioration, they feel that she has a life limiting condition, and is unlikely to reach adulthood.

Nearlythere I've read up about PEHO. You have a tough road ahead hun, but you know us mums....the harder we are pushed the harder we push back. We bend, we don't break. You will make it through this battle and Ava will adore you for it

 

[lilesMom]

I was wondering why brown sugar and water worked so well tomove bowels.
Just gave him pear juice AMD water.
Worked already xx

Yay! Im glad he likes the juice. Pear juice was the only kind DD would ever drink but she only took sips. I have had to put brown sugar in her milk before to help her go.

When DD was diagnosed her neurologist didn't get to examine her arms well as DD was throwing a fit and wouldn't let the neurologist touch em. The neurologist said that she was calling her diplegic for now but things may change. It's looking like they have. She's also showing signs of right sided hemiplegia. Her right arm, leg, back muscles are all tighter and she uses them less. She's super sensitive on the right side of her mouth as well. We have to do oral desensitization stuff with her because she guards her mouth so bad. Does Simon get freaked out if you touch inside his mouth, cheeks, gums and teeth??

He used to.
But we hve an oral program we do and he is pretty used to it now
Those therapies do help lots. He still doesn't love it
But will allow me ;-)
Plenty of messing.
Tickling and rubbing right side helps lots. ;-) xxx
It's simple things make a big difference

 

[lilesMom]

Slightly weird but silly things like rubbing toys on his face and lips.
Playing with bottle and spoon on his gums.
Blowing raspberrys on his face and lips .
All relax him and help too.

 

[essie0828]

Does Simon have teeth yet? I wish we would have started DDs' oral protocol before she had teeth. I've had quite a few bad bites. She has broken the skin a few times, ouch! We bought a DnZ-vibe from www.ARKTherapeutic.com after her speech and occupational therapists recommended more stimulation for her mouth. Their site is awesome. DD loves the berry scented grabber, she really gnaws down on it. Good for her teeth and jaw muscles. They have lots of fun stuff, check them out. I think they ship internationally but im not sure. Btw I don't work for them or anything we just use their stuff.

 

[nearlythere38]

Thanks for all the kind messages. I have several good days followed by a really bad day where i am in tears most of the day. Its when i think about the future that i get upset. I can deal with the here and now and caring for her 24/7 and all the changes that our lives need to make. But when ii dwell on her future and the things that she wont do thats what hurts......then i think the other way, what if we only have her for a short time. Its all unknown and thats the worst thing.

They are not hurrying to diagnose peho because there is no test for it. Its a group of symptoms. She has the PE and O but so far not the H (hypsarrythmia on the eeg). But her most recent sleep eeg on thursday was grossly abnormal and could now be "evolving to hypsarrthymia".....so i dont know what they will do now.

Gonna be getting a peg tube fitted soon, had the ng tube in a couple of weeks now but peg is better long term.

 

[lilesMom]

Does Simon have teeth yet? I wish we would have started DDs' oral protocol before she had teeth. I've had quite a few bad bites. She has broken the skin a few times, ouch! We bought a DnZ-vibe from www.ARKTherapeutic.com after her speech and occupational therapists recommended more stimulation for her mouth. Their site is awesome. DD loves the berry scented grabber, she really gnaws down on it. Good for her teeth and jaw muscles. They have lots of fun stuff, check them out. I think they ship internationally but im not sure. Btw I don't work for them or anything we just use their stuff.

nope no teeth, def makes it easier
cool il take a look thanks
yeah when i was given the oral program i didnt think he needed it to be honest but did it anyway.
he was very young , its only now i realise he did need it and am glad we were made aware of it
simon loves licking things
everything gets licked , its how he decides if he is gonna chew um or not i think he has few fav s that will always get chewed
my finger is one of um

 

[lilesMom]

Thanks for all the kind messages. I have several good days followed by a really bad day where i am in tears most of the day. Its when i think about the future that i get upset. I can deal with the here and now and caring for her 24/7 and all the changes that our lives need to make. But when ii dwell on her future and the things that she wont do thats what hurts......then i think the other way, what if we only have her for a short time. Its all unknown and thats the worst thing.

They are not hurrying to diagnose peho because there is no test for it. Its a group of symptoms. She has the PE and O but so far not the H (hypsarrythmia on the eeg). But her most recent sleep eeg on thursday was grossly abnormal and could now be "evolving to hypsarrthymia".....so i dont know what they will do now.

Gonna be getting a peg tube fitted soon, had the ng tube in a couple of weeks now but peg is better long term.

hugs hon xxx
try to focus on the fact that she is here with u and she is gorgeous xx
its so hard i know but u have to hold onto hope htat u can help her and she can have the best qualty of life possible to her.
hte doc sin the hospital kept saying to me htat with therapies we make simon the best he can possibly be.
he may not be health problems free and he will always have issues, for want of a better phrase but i will always do my best to make um as small as i can and to help him.
as im sure u will do for ava xx
i didnt start to think about the future till the last 2 weeks or so cos i just wasnt ready to deal with it xxx
take one step at a time as much as u can.
hugs hon.
i know u are having an awfull time at the mo and i hope i havent said anything to upset u more xxx
simons last eeg hyspsarthymia was gone and had been realy bad the eeg before that,
so one abnormal eeg isnt the norm for her and it can change for the better as well xxxx
we r always here for u, big hugs xxx

 

[essie0828]

Nearlythere You are doing amazing! You deserve your breakdowns, meltdowns, throwing tantrums if you like. Do your best to vent where you can and get support. Don't let yourself think ahead to much, the future is as always, unpredictable. We live now, we love now, we work now. Kiss that Ava for me You can do this nearlythere and you will be SuperMom after these trials and battles. Ava makes you strong. That's always something to appreciate.

 

[essie0828]

I took DD to therapy today and found out that her speech therapist had went into preterm labor. She said last week her back was hurting but I never thought for a min she would be having labor pains. Poor girl isn't due until March 5th. (DDs due date strangely enough) I think they have stopped her labor and hopefully all is well. This is like de ja vu. It's so eerily similar to what happened to me with DD. 6 weeks before she was due I was admitted due to high keytones and protein in my urine. Bp was normal and dd showed strong on heart monitor. I was dehydrated and hungry from morning sickness, i threw up the entire pregnancy. I got to go home the same night though. I think she has been in the hospital a few days now She was 18 weeks pregnant when we met and I unknowingly scared her to death with Hayleys' story. Now the poor dear is walking our footsteps I hope her boy is ok.

 

[essie0828]

On a lighter note, DD was acting up a bit because we had a fill in therapist, who was also very pregnant. Due next week kinda pregnant! DD got angry, stiffened up, went straight back into me and headbutted me in the nose full force. It all but leveled me right there in front of this girl. Eyes watering, nose bleeding, wrestling an angry, fairly mobile, huge, toddler with CP. Try to make that crap look graceful. You can't! I was so embarrassed and the poor therapist guarded her belly the rest of the session.

 

[lilesMom]

oh oh. x ur poor nose x
hope hayley made friends with her therapist
hope ur nose is better, that really hurts, u would be seeing stars

my car, oven and dryer have died, arrrgghh
not sure where money to fix um is gonna come from but anyway.
thats 3 so hopefully ned of bad luck for abit xx

 

[essie0828]

Oh no lilesmum. That is a stretch of bad luck. I hope you can get things fixed soon hun We are on a shoe string budget since I haven't returned to work so I understand the worry with all that. Oddly enough, our oven broke about a month back. Ugh, so frustrating! I hate when cars break but DH is a good mechanic so that saves us some money. Do you guys have public transit?
We don't here and it sucks. I think there is a service for the disabled but no regular busses and very few cabs. Our neighboring city has a full transit system and busses run all the time. Sometimes I think that's easier than keeping up with cars

 

[lilesMom]

I live in the country side so ni public transport.
Luckily oh got it running. Hopung it stays ok now
Same here cos I didnt go backk to work less money too.
I'm used to it except when things break ;-)
A car is more expensive than buses
But I love my home. Wouldn't trade t.
How ye doin?

Nearly there thinking of u and ava xxx

 

[nearlythere38]

Thank you

Not much happening here really. She had her gastrostomy fitted on thursday, so this weekends been not great for ava cos they had to starve her first, then build her feeds up slowly. Sheshad tobe sedated a few times.

We are hoping to get back to our local hospital in the morning. But they are sending some more genetics tests off tomoro first

 

[lilesMom]

aw poor dote xxx
local hosp will make things a little easier and step in right direction xxx
hope ye get good news from tests xxx
how r u now? r u exhausted hon? xx

 

[essie0828]

Poor ava, that has to be hard. Hard on mum to I hope she adjusts to the g-tube quickly dear.

 

[essie0828]

Hi ladies.

How are the kiddos?

Been thinking about little Ava, hope she is closer to home and the seizures have stopped. Also hope the g tube is getting easier for her and mum.

 

[lilesMom]

Hey. Xxx
Simons being doing a weird thing with his head and startling awake at night. Again.
Wad ontothe epilepsy nurse.
She is gonna talk to consultant and get onto me tomoro.
We e both unsure id it's behaviour or seizure so.....
Hope alls well with ye xxx

 

[nearlythere38]

We moved back to our local hospital on monday evening. Her g tube is fine and im confident feeding her now. Seizures have increased again unfortunately so they are increasing meds again. She de-sats completely during seizures, turns grey and stops breathing its so scary.

On monday we have a discharge meeting, where all people involved attend and we plan ongoing care and what equipment we need etc. They are hoping to get a night nurse for at least some nights. She has also been referred to 2 childrens hospices and to a palliative care consultant....its all becoming very real and very daunting.

Im sorry i cant read through all the thread cos of this stupid phone but i hope all the kiddies are well xx