Any Cerebral Palsy parents out there :)

[essie0828]

Scum of scum if you ask me. Not sure if we will have a chance at getting it back but account is canceled so no more damage can be done. Hows simon feeling? Getting over the croup? He probably wont be up for standing for a while until he feels better. Hayley always does that when shes feeling bad. Hates standing and walking then. I cant wait till he walks hun. He will. I promise. But it will take a little while. Hayley is almost 3 and she still cant walk unaided. She just had to.take her time. Got some of the preliminary genetics back, she has all her chromosomes with no large pieces missing or added. This doesnt mean she is free of genetic defect but this rules out some of the dangerous disorders. Waiting on more in depth results but things are looking up thst this may be "static", or non progressive. Her tsh test came back normal, so thankful for that. It seems her brainstem and the area around her pituitary gland are undamaged. MS may not be whats going on in her brain. Only time will tell i suppose. For now shes happy and healthy and that keeps us going. In the hospital she beamed for everyone, huge smiles even though she was sick. On new years eve some sweet volunteers brought her a goodie bag with party hats and necklaces. She wanted them on at once and paraded around the halls showing off.

 

[lilesMom]

Some days I'm impatient for,walking
Other days o know he needs to do it in his time :-D

So glad testing is going,well
Xxx
hope it keeps looking great Xx

Hope they'll catch who took ur money
Its seriously awfull
Hugs

Is,hayley a girlie little girl so
Into handbags and jewellery :-D
Cuteness

 

[essie0828]

Lol ,yes the little thing is turning into quite the princess. And I have no clue where she gets it because I am Not, lol. I only occasionally wear makeup and do my hair and when I do she is fascinated with my face. She will touch my eyelashes and lips really gently and smile. She tried to do her own makeup and spilled a whole bottle of foundation on my bed and proceded to paint herself with it. Hands, legs, bellybutton, a huge swath of my sheets.....all covered. I underestimated her ability to twist off lids. And the more glitter on something the more she likes it.

 

[essie0828]

Oh and as far as jewelry. She walked some of her first steps to collect jewelry. Her PT wears tons of jewelry and would take it off piece by piece and lay on the floor. Hayley would walk and pick up all her jewelry. This lady has some expensive jewelry to! Im sure her bracelet costs more than my car but she always lets Hayley play with it. Shes the sweetest lady ever.

 

[essie0828]

How is S doing with his seizures? Meds working better? I worry sometimes that DD may be having them and Im missing them. All the docs seem surprised when I say she doesn't have seizure activity. She does this thing where she moans a lot but shes active when it happens. Does it walking, or while she plays. Ive seen her daze out but i can always get her attention after a couple seconds. I dunno really. I get what the docs are confused about. Theres some undirected electrical activity in her brain from the lack of myelin but I havent identified a seizure for sure. How did you notice them in S?

 

[lilesMom]

Aw cuteness :-D
I hve a 3 yr old niece the same
Loves getting new clothes
And had done since she was tiny :-D
She would do a great fashion show for us :-D
Loves handbags

S loves his grannys jewellery
The more colour the better
She wears big chunky coloured stuff
That's my mom,
I never wear it cos I'd be tormented
And it would be broken :-D

 

[lilesMom]

S seizures were very obvious without medication
Its only now when getting more controlled
Its hard to tell I'd dystonia or seizure
He is still having them now
But mild and not full blown or as often anymore
A Doc in hospital ages ago said to me
That everyone has a seizure threshold,
If u have enough damage or stresses to break that threshold anyone will hve a Seizure.
Simons threshold is lowered by his stroke, sickness, cobwtipation etc which is why he has them.
Maybe hayley has a high threshold to begin with?
I'd that makes sense.
The spacing out u sometimes see could be mils seizure activity without being full blown seizure.
Does she cone out if it with distraction or touch.

 

[essie0828]

Comes out of it mostly with touch. I can say her name and get nothing, a favored toy or fingers snapping works most of the time, but im always touching her at point to. Im not sure really. She will also take toys that have flashing lights and sorta space out whilst pressing it close to her face and pressing the switch over and over. Ive seen this behavior just 3 or 4 times with a paticular phone toy that has a red light. Mostly when she was very tired, or sick. Also seen her do this with another light up toy.

 

[lilesMom]

Simon does tXx s with lights too
But I thunk it's a sensory thing
Not an epilepsy thing.
In eeg he doesn't react to the lights,
He loves looking at them but they don't trigger epilepsy
So they reckon he isn't photosensitive
Another Doc told me only a small percentage of people with epilepsy are
I think he said ten percent but I'm not sure on number
If she stops with touch, I reckon it's prob sensory overload a little
or old fashioned day dreaming
I'm a deadly spacer sometimes from day dreaming :-D
S slowly coming round to standing again.
Thought I was goosed with it :-D
He has just started erythromycin for reflux
Just to trial it
Fingers crossed :-D
How ye doin xx

 

[lilesMom]

We started ttc
Still nervous but fingers crossed things go ok this time :-D

 

[essie0828]

Aww hun that's awesome! Me and mine wish y'all the best, I really hope you catch quick . God, the waiting to get pregnant always drove me batty. Lol. I'm very impatient. My insurance agent and one of Hayleys PTs both said they were trying to have a little one. Both are doing IUI or IVF. Our insurance agent is sweet, he and his wife are both in their early 40s with no children. They are trying despite the "Advanced maternal age riskis". They are really sweet to Hayley, I think they will make great parents. When are you testing? Sorry for being nosey.

I think your right about sensory overload being an issue with DD. She has issues with being really fascinated with anything that lights up really. Tablets, toys, christmas lights, to name a few. I still have my tree up and lights on one window by the tree. That's really kinda considered tacky where we live but DD LOVES the lights. They are all on one switch and she flips it first thing everyday. Shes not as grabby with them anymore. Still has to gently touch them sometimes though. We had a living tree this year, root ball still attached. We planned on planting it at my mums over the new years holiday....lol. Well we were in hospital, got robbed and all that so the tree has been kept inside too long. It has broken dormancy and cant survive the temps outside right now, (7°F yesterday) so Im sorta stuck with it indoors until spring. Its beautiful, smells nice and isn't making a mess so were keeping it. My dog thinks her home is under it, she sleeps under it every night

 

[essie0828]

We are "in talks" about ttc. DH and I still aren't on good enough terms to bring another baby into this now. But both would like another someday, mabey, lol. Things would have to change a lot before ttc would be an option.

 

[essie0828]

Erythromyacin for reflux, they are thinking he has h pyloric ulcer? My husband and cousin had this. A course of antibiotics, a month of acid reducers to heal the stomach and all was well. My husband was very sick with this for a while when we were younger.

 

[essie0828]

Wow just read they are using erythromyacin in little ones with cns damage to stimulate stomach and intestinal contractions. Interesting! Is this what they are thinking with S? DD doesn't throw up much but constipation is a problem. She is having trouble adjusting after these massive doses of antibiotics for her eye. Loose stools one week constipated and not eating the next.

 

[mummy3]

Trying to catch up! :wave:

That's just awful about the stealing Some people just have no shame and no heart, I'm so sorry

Hope the LOs are starting to feel better?

Essie, that's good news about the first lot of results, I hope you get answers soon

Yay for TTC!!! Baby dust!!!

My little girl was born Dec 22nd, fast c section at 27+1 after pprom, born 2lb 1.5oz and 13in long. Amelya So busy holidays for us!!!!

 

[essie0828]

Shes beautiful!!! Omg I bet you are busy! Congrats! Is she still in hospital?

 

[essie0828]

Wow mummy3! I was watching the ticker before the holidays but never expected you to come back in the new year with a new little girl. I hope you both are doing ok. She's looks like she's on room air. Seriously?! What a tough little lady! Lol. Aww super congrats, ty for sharing her pics

 

[Pink_Sparkle]

Hi there, I've not been on B&B in a long time! I was wondering if I could join in this discussion? My 20 month old son was born at 23 weeks, as a result he has ******* quadraplegic cerebral palsy and poor muscle tone. I'm starting to feel a little isolated (in the parenting world anyway) as I don't know anyone who's in a similar situation with their little ones. I'm sorry I've not been able to read through all the posts but I'm happy to join in if you'll have me! Xx

 

[Pink_Sparkle]

I've just realised that the S word has been blanked out - I was using it as his full medical diagnosis but I know it's used in other terms also hope I didn't cause offence x

 

[essie0828]

You are very welcome dear. Glad to have you. Yeah its kinda ridiculous they block out sp@stic in this thread anyway. Its apart of a lot of CP diagnosis. No offence taken dear, not at all. Hows your little one doing?