Any Cerebral Palsy parents out there :)

[lilesMom]

Sorry I'm typing,with my thumb and light from phone is making s,stir in his sleep.
Il do my,best to proper post tomorrow
Glad mri went well
Some kids,get upset by,sedation.
Xxx

 

[essie0828]

My kiddo has sensory issues and doesn't react to pain very much as well. We are actually in the waiting room while she gets her MRI now. Hated watching her go to sleep. Hate waiting even more, I want my baby girl

Ladies hug those babies for me. Wishing y'all well. Hope to get some free time soon to catch up.

 

[lilesMom]

Ye ok essie Xx
Things a bit crappy and hectic here too.
Still having fits and feeling off from medicine.
Another raise on Fri again.
My money got stoped due to Office mistake
Heading into fourth week trying to get it back
But was told today I will get payments again
Thank God
No Xmas shopping finished cos of it
And bills mounting
My car needs more repairs too
Failed car test twice
I spent most of yest crying
But I'm ok again todaay.
Simon hates his afo,
I really want to get him crawling so he is less frustrated
Sorry huge moans
But needed to vent :-D
Hope ye ok xxx

 

[mummy3]

Essie, how did the MRI go? Its so hard watching them go off to sleep Alasdhair had his scopes yesterday too so had to watch him go to sleep again. When do you get results?

The pain thing is odd, I wonder what it is!

Lilesmom, 4 weeks no payments? That's awful!!! Will they at least backdate? Really not fair of them to do that this time of year I hope Simon is feeling better? Vent away The frustration affects them so so much, whether its motor, communication, social etc, when they cant get across what they want or do it when they want to, it makes for very grumpy little ones

We got Alasdhairs report back from the MRI, basically, bilateral periventricular white matter signal most likely representing gliosis from perinatal insult, corresponding with mild thinning of the isthmus of the corpus callosum seen. So something called periventricular gliosis/leukomalacia is giving his delays and CP. He was 9 weeks early with a emergency delivery deprived of oxygen so was at a high risk. We are happy that the fluid levels appear to be in normal range now

 

[lilesMom]

Were the mri results what u were expecting mummy 3
Hopefully better than expected Xx
How u doin yourself?
How did scopes go today

Hope all's well with ye essie x,

 

[essie0828]

Hi ladies.

lilesmum. That's a lot to have to deal with hun. Hope they get everything straight soon! Hugs to little man. I hope he feels better soon.

Mummy3 I hope you get good info from his scope report.

Well we were delt a blow with DDs MRI results. She's showing demylenization inconsistent with CP. We've been referred to genetics and have way more questions than answers at this point. Multiple Sclerosis seems to be a possible diagnosis. It's all overwhelming really. Feeling sort of lost and unsure of where to go from here. It's possible her condition can.deteriorate over time, but we are mostly unsure right now. I expect lots more testing to come. Love to my bnb girls! Be back soon!

 

[essie0828]

Lilesmum sorry about the car test It's hard to concentrate when you have a lot of stressful things going on. I got a speeding ticket a little while back. $177 worth of speeding supposedly, according to the cop. Merry Christmas to me. Grr. Do you get another shot at it? Hope Simon takes to his afo soon. DD didn't like hers at first either. It was a gradual acclamation and she still will try to take them off at any chance. But she also knows that they help her move faster now so she will tolerate them for that. He will take to it. If he gets frustrated give him a few days out of them and start over. Took Hayley months to get used to them. I have not finished my Christmas shopping either. Have a few bits for DD and DH and some vanilla curing to give to friends and such. Going frugal this year, making candies and cooking more than spending $ in the malls. DD is getting thoroughly spoiled and I'm satisfied with that At least we can afford to buy gas for the vehicles now Gas prices dropped over a dollar a gallon here, me and hubs danced a Lil jig

Mummy3 the report you got from A's MRI was what I was expecting to hear about DD. Was really expecting periventricular involvement but she had none. Her brainstem however was lit up like a Christmas tree. I've not spoken to anyone formally except a nurse, but I have the MRI images on my computer. All 1588 of them. My brain aches from studying them, literally aches. DH took my power cord to work with him today to keep me out of them for a bit. I need a break. The nurse was very vague in her description of the results and informed me the doc was out for the next few days. Great! So I'm getting the radiologist report and I'm gonna figure it out myself. I am not much for waiting. Her scan pics are very different from the hundreds of CP MRI images I've seen researching over the last couple years. I saw that immediately, with a very untrained eye. It's a big shock, we've went a little numb over it and are just enjoying the weekend spending time with DD. I'll have more details in a few days.

Love to y'all and those beautiful babies!

 

[lilesMom]

Hugs essie.
Hoping,Doc gives u good news
And a clearer picture.
Damn them making u wait Xxx
Huge hugs xxx

 

[mummy3]

Big hugs ladies

Lilesmom, how are you guys doing? Everything getting ready now for Christmas? How is Simon?

Essie Genetics are a great resource, we would be totally lost without ours. If you want I can help you look at the images? Seen a lot between mine and the kids. My sister has MS, I have epilepsy/isaacs/CP and my 3 year old had an abnormal MRI with inconsistent demylination. We still don't fully know the answers for her though, she is on meds for epilepsy, has ASD (lost all language), development delay and doesn't feel pain. Geneticist initially said retts syndrome but now she doesn't show the hand movements. Anytime you need to talk

$177 of speeding

Alasdhair's scope procedure went well, the results were not the improvement needed though. Had to take him to childrens urgent care yesterday and it turns out he has an ear infection. This means antibiotic capsules we have to open, mix with water and syringe in as he's allergic to all foods and dyes He's not been eating much for awhile now and he's lost weight, he refuses his formula! He has no safe foods though so with refusing the doctor said the clinic will want to put the tube back in She sent the message to them with the measurements on same scale. Urgent care is the same system as main childrens where the clinic is.

 

[lilesMom]

Hey :-D
Another med raise here
It upsets him for,a bit
Still mild fits,but less than before
Teething hard, poor guy.
His tummy is,a bit,all over the place from med.
But,He is in good form so not too bad

Sorry to hear about infection
Hope a feels better soon hon x
R,ye home again?
Hope so xxx


Essie hope h is good xxx

 

[lilesMom]

My money still not sorted so Xmas prep on hold
We did go to see Santa yest
He took no notice of,Santa but loved the Xmas lights
And loves his puppy toy,he got

 

[mummy3]

Oh no lilesmom!! That's getting awfully close to Christmas now for the money to get sorted Do they have an estimate time for it to be fixed? I'd be hopping mad waiting like this!!

Glad Simon's fits are less, med increases can take a lot of adjusting Teething is not fun!!! Hope his tummy settles fast

Yeah right now we are home. Yesterday the EoE (eosinophilic esophagitis) clinic called to see him at 2pm, confirmed he needed the tube back in and gave us an appointment at GI for today at 3pm to go and get it placed, collect the pump etc. They're doing NG again, not sure how that's going to go down with a 17m old!!

Essie, how are you guys?

 

[lilesMom]

I typed a,post last night but it seems to,hve,disappeared
Hope it goes well today mummy3,
Big adjustment for a,again
Hope,he takes to it ok Xx

Money will,be back the 18 th
I hve it on writing now so it should be there
Least Il,actually def get it :-D

Hope h is sell essie xxx
How u doin?
Any,better answer yet xxx
Hope ye r ok xxx

Welcome Samantha

X

 

[lilesMom]

Hey how,ye,all doin Xx

I got Simons,repeat Prescription today of his meds
One of them my chemist gave me 25 mg tablets instead of 2 mg ones he should have
I'm so lucky I spotted it.
The outside sticker they put on pack says 2 mg
But the tabs inside are 25
Iwould hve been giving him tabs 12.5 Times his dose.
Scares me
Thabk God I saw it.

Hope everyone is well.

Essie hope ur just busy xxx
And,things r ok xxx

 

[essie0828]

Hi ladies

Sorry been away so much. I keep popping in to read but never take time to answer. Shame on me. I know you ladies understand though

Lilesmum thats too damn scary. I think I would be after me a pharmacist to thrash. Thats deadly and very stupid on his/her part. Tell them to grab a cup of coffee and wake the hell up before they kill a kid. Holy cow! Wait. Is coffee a thing over there or are you guys tea people? Hows wee man? My little one loves the lights to. She just Has to touch them, so we put them all over her ball pit and let her play with them in the dark. She was very entertained to say the least. Getting her to bed after that was rough.

Mummy3 Sad to hear your little guy has to have his feeding tube back. NG tube will be tricky probably. The older they get the harder it is. We patch Hayleys eyes as a part of her eye stuff and she will rip them off in a second now. When we first started I could just swat her hand away and she wasnt fast enough to get at it. Now. Omg. Now I have to reason, and bribe, and trick, just to get a portion of the time in. If i had to tube feed her I would fully anticipate a war. Good luck!

 

[essie0828]

So its been kinda crazy around here. Kiddo has croup. We were in the er all day with her, after sitting in a urgent care clinic for a good while. They looked her over and told us to go to the ER with her. Some steroids and shes doing a little better. Shes still quite miserable, poor girl. Not much news on the MRI front. Weve been handed off to genetics for answers. Its really odd how they are avoiding my questions. Im a little suspicious. Genetics appt is thursday. Roll on Thursday!

 

[lilesMom]

Totally understand essie
Sick kiddies leave little other time
S had croup a little bit ago
Horrible thing Xx
Hope h is better soon Xx

Roll on thurs for more answers
I find our docs don't like giving answers until they aare totally sure
They like to hedgetheir bets , in case they turn out to be wrong
Hope thurs goes great aand helps u sort out stuff xxx

Aw lights like that sound lovely for h.
S has a torch with 5 coloured lights
He adores it

 

[lilesMom]

Coffee and tea are both good
:-D
I was hopping at first with tablets
Very dangerous mistake
My family hve gone yo same chemist all our lives
Never mistakes before
The guy who owns it is quite sick
He has hired new workers,
Think it was prob one of them

 

[essie0828]

When I was a kid we had a family doctor and went to an apothecary that had a soda fountain and ice cream. We knew the family that ran it and they knew all their customers. Now things have changed so much with big chain pharmacies taking over. It sounds like your chemist is similar to what we had growing up. I miss that personal feel. Way to go momma for spotting the mistake. :thumbsup: This croup thing is for the birds. This is the first time kiddo has had it, ive never heard such coughing from her. Coughing all night, nose flooded with snot, ear draining, she is pitiful. I remember you saying S had it. Hes so little to, poor lil man. I understand fully how rough you had it I woke with a sore throat and horse voice today. I do believe DD has shared her germs with me. She is feeling better today and resting well, Eating and drinking well, so im happy. Still worried over thursday but today is looking up. Hows S after his last med increase?

 

[essie0828]

Oh and how are afos going?