Any Cerebral Palsy parents out there :)

[lilesMom]

hugs nearlythere xxx
glad ye r moving from hosp but so sorry its all scary xxx
how is she in between episodes? xxx

 

[nearlythere38]

Shes not herself hun. Been a different baby for the last month

 

[lilesMom]

sorry to hear hon. xx
was hoping ye had some good time in between, big hugs xxx

 

[essie0828]

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

Oh hun I can't even imagine how you feel. I am so sorry. We are all pulling for you and little Ava. Stay strong mama. You can do this.

 

[essie0828]

Hi ladies

Was wondering about the kiddos. How's Simon? How's little Ava?

Hayley is doing great and for that I'm thankful. She's becoming so strong willed......I'm worried she's gonna be a hell cat. Hitting, kicking and throwing toddler tantrums when she does not get her way Wow terrible twos here we come. She's soooo big to! 36inches and 30lbs. For u metric gals, 13.6 kg and 91.5cm! She's not yet 2.

 

[nearlythere38]

Sounds like hayley is keeping you on your toes! The terrible twos are fun :-/ my toddler is 2.5 and very strong willed!! Character really starts to show. Hes so different to ny oldest, oldest is shy, quite serious and quiet. My two year old will speak to anyone and is best described as a whirlwind lol.

Ava is not great. We left hospital on tuesday and came to a hospice for some respite. We are goinghome tomorrow, which is going to be strange after 7 weeks.

Things have progressed in terms of a diagnosis, a test came back positive for a rare metabolic condition called CDG - Congenital Disorder of Glycosylation. It explains everything with her. Got to wait a few more weeks for further results on exactly which type it is, as they all have different prognosis and symptoms. At present her epilepsy is uncontrollable.

The other night sh was fitting for 2 hours and her heart rate n oxygen were going low, so at 4.45am they say me down to discuss whether Ava should be rescusitated if her heart stops or if she should be intubated. So that wasnt great weve made a plan with the palliative care consultant now for these things

 

[essie0828]

Oh hun. I'm so sorry. I hope coming home will make things a little better on your family. Will you have help with her nursing care at home?? Your 2.5 yr old sounds like a hoot, I bet he's so funny. Praying for your family hun. Stay strong busy momma

Well things have gone a bit nuts here. I've had a faint positive/evap on a pregnancy test and my period is late. I don't trust the result so I'm waiting to take another test with FMU. We've had to put DDs therapy on hold for a few weeks until we clear up some things with her insurance. I'm upset about that. We are in a limbo until her disability benifits are approved (applied 2 months ago). Or until our application for private insurance goes through. I hate this health system. DD is obviously disabled and we are still waiting but my sorry ass inlaws got coverage within 2 weeks just because they won't work. So in the meantime we have to pay out of pocket for any medical treatments. Also got labs back for DD and her vitamin D levels are low. Hoping the supplements and some sun help.

 

[essie0828]

Well girls my suprise Valentines day present is a BFP. Got an obvious line on a 100miu test, so I guess that makes it official. I guess make up turned into baby making Well nothing left to do now but wait and see. I hate that part.

to you all and give those beautiful kiddos a big Valentines day kiss for me Off to make kiddo a heart shaped strawberry pancake for breakfast

 

[lilesMom]

nearly there hugs honey xxx
what a horrible thing to plan regards resuss, hope ur holding up as well as u can hon xxx
glad ye r gettin home xx
hope her tests come back with best kind of it, if there is a better kind xxx

essie congrats honey xx
im jealous xx
best of luck for happy and healthy preg xxx
hope insurance comes through soon xxx
i know how upsettin it is to be put back therapy wise but sounds like she is doing just great xxx

over here simon is having seizures again.
been onto hosp for 3 weeks,
finally got rescue meds yest and goin for eeg again next week.
prob startin epilam as well as vigabatrin soon.
hope it doesnt make him too sleepy.
we had to hold his therapy too cos of seizures.
i satrted crying into therapists faces when they told me i couldnt have stander and cast in case he injured himself in it.
was really looking forward to progressing.
but hopefully really soon we will have epilepsy under control and be able to get them.
he is in good form today anyway

 

[essie0828]

Poor Simon, I hope he responds well to new meds. Glad he's doing good today and hope it continues. Girls I swear Iwould go nuts being in a hospital that long, but I understand the need to be with your baby no matter what. You ladies are AWESOME mamas! An inspiration for sure!

Thankfully DD is doing well with her walking. She has to use the kaye walker still but she has developed a love for walking. First thing when we get downstairs in the mornings she goes to it and wiggles it so I can hear it. I'll ask her if she want s to walk and her eyes light up, then she will sit for me so I can put on her braces and shoes. Thats about 10 min. An eternity to a 2 year old but she hardly ever fusses. I'm thankful everyday she is doing so well. I've found out that we can continue some of her therapies, the home visitors, a PT once a week and a ST 2 times a month. Its no where near the 5 sessions a week we were doing but I am confident I can fill in any gaps until insurance picks up. I think with this new addition our status changes and we may get coverage sooner.

Lilesmum how long till you try for #2?? We were wanting to wait but DD broke my phone and my period/ovulation data for 2yrs was lost and I didn't properly track. Not to mention DH was pulling out. It's so odd, we've been stressed out and at each others throats and only DTD 3 or 4 times this month and Suprise. I have had 4 mc's though, one at 16weeks, so I kinda just go into denial until a baby actually gets here. Hoping this sticks even though I'm terrified of having another baby after DDs shoddy birth. I still haven't picked a new doc

 

[lilesMom]

Aw lil cutie mad to get walking ;-)
Hurray she is doing so well xx
Congrats again. Praying fir sticky bean for u xxx
No clue on me trying I change mind every day

 

[essie0828]

Lol. Its hard to make the decision to take on another baby. I put it off till we had an accident. A happy accident, DH came outta denial at work and sent me a msg with names he likes. Little soon but sweet of him. He sent mostly boy names to, I have a feeling that we won't need those boy names.

Is that a picture of your cat in your avatar? If so I have its green eyed twin. Kitty is 12 yrs old, solid black manx mix. No tail. And she loves sticking her head in bags and boxes.

 

[lilesMom]

Aw so exciting thinking of names ;-)
We most likely will at stage soonish TTC
But anytime Simon has a setback it gets pushed out ;-)
I would hve said I wanted boy abd girl before Simon
But now either be great ;-)
If boy he has a bro and f girl we gwt one of each ;-)

 

[lilesMom]

Forgot. Yup it's ny cat.
He is looking out rhe window in an envelope ;-)

 

[essie0828]

Lol. Cats are crazy creatures. Mine is so gentle with Hayley and she sleeps under her kaye walker a lot since we got it. I guess she thinks its a box or something

How's simon doing today? Meds helping or are they making the poor lil man tired? Had to take DD into the local clinic today, without insurance She has a nasty upper respiratory infection with a fever. Luckily they took it easy on us financially and we were only out 100 $ for meds and office visit. And insted of just getting 1 lollipop, they gave DD 4 of them. She was a happy girl. She did so well for the exam to, my baby is growing up

 

[essie0828]

Aw so exciting thinking of names ;-)
We most likely will at stage soonish TTC
But anytime Simon has a setback it gets pushed out ;-)
I would hve said I wanted boy abd girl before Simon
But now either be great ;-)
If boy he has a bro and f girl we gwt one of each ;-)

I don't really care about gender either, Hayley has shown me that kids are awsome no matter what. It will be much cheaper if we have girl though, I still have ALL of DD baby clothes And every thing else for that matter. I'm a packrat when it comes to baby stuff I'm a little scared of getting attached to this pregnancy but I can't help it. I keep peeing on sticks to make sure the line is getting darker. Probably lulling myself into a sense of false security.

 

[lilesMom]

Aw hugs honey.
I really hope ur bean is sticky xxx
No reason why it isn't but I know the constant worry xxx
Il keep my fx for u sweetie xxx
Hope hayley is feeling better soon xxx
I did the constant peeing with siMon too.
It is reassuring xx
Just remember it can be fainter cos of diluted pee
Or ink in test too.
I'm case u gwt a not so dark one fx

 

[lilesMom]

Simon had none today ;-)
Here's hoping that's it ;-)
Only added laxative so far.
Wed we see neurologist but he may not need extra meds now ;-)

 

[lilesMom]

Also I stopped giving him yoghurt.
My.moms epilepsy is triggered by foos so maybe that's it
Not sure but it's good it's gone for now ;-)

 

[essie0828]

That's awesome! I'm glad he's doing better on less meds. My aunt has epilepsy and she swears some foods trigger her seizures. I hope whatever the cause, that he stays seizure free. Hoping you get good news from the neurologist

We still have to give DD laxative sometimes. She hasn't been eating well because of this infection so I am sure she will get backed up. Unless the antibiotics give her loose poops. We had a horrible night last night, fever of 103.6 and she was just miserable all night. I had to actually wet her head and shirt to cool her. I was afraid she was going to have a febrile seizure. Finally fever broke around 10am today. Whew! Lol I'm still taking pregnancy tests and they are getting darker fast. Even with diluted pee. Starting to have nausea and booby pain to Have to sort out an obgyn soon, probably tuesday but they normally won't see you till 6weeks for a dating scan and pap. Eeek this is getting exciting!