Upset that I have to post in the nursery :(

[Rae1889]

Hello everyone.

Been a while since I checked in since the baby bat was born, and unfortunate I’m back but this time not for me.

Little one had a difficult delivery into this world and initially we were told she had Erbs Palsy from the doctor dislocating her shoulder during delivery. But i would watch her and notice that she also had weakness on her right leg and side of her face (she had a crooked smile)

We also knew she wasn’t a great eater, because she wasn’t gaining the weight like she should be. She would also delatch from feedings and have a hard time staying still. I kept pushing to have someone look at et and finally got an appointment with ortho to check out her Erbs Palsy. The ortho did some tests and said right away it’s not Erbs, but that she suspects she had a stroke.

Cue mother panic. So we sent off with a referral for an MRI and neurology. She would have these foot flutters and then started to head drop. I wasn’t sure if this was from not being strong enough to hold up her head or if they were infantile spasms. So of course I’m freaking out because the last thing I want for my daughter is seizures like me.

MRI went well. They didn’t have to put her under as she’s deaf so the sound didn’t bother her and se slept right through it, although they weren’t able to put in an IV for contrast even after poking her 3 times. We got the call a few days later that the stroke was confirmed. I cried. We went to see neurology a couple days ago and she did a full exam on her and noticed the flutter and head drops and confirmed they were seizures the brain damage of her stroke is almost her entire parietal lobe. I was told kids like this don’t have much chance of learning to walk, and will need speech therapy. Mentally she should be fine.

I’m a wreck. She was started on topamax a few days ago, and it breaks my heart seeing how well it’s working because it means she’s going to need to be medicated for an inderminaite Amount of time. I’ve got to watch for side effects and other seizure types and stroke warning signs in case she has more (they are going to test her for a family illness called Antiphospholipid Antibody Syndrome) I’m pretty over whelmed and I’m grieving the future I had envisioned for her. Playing sports and walking down an aisle for her wedding one day.

 

[Nakamova]

Oh Rae, sending you and your little one many big hugs.

 

[finalpoet]

Rae, I know it isn't what you need, but I'll keep you in my thoughts. And I'll ask my sister to pray for you in your hardest of times.

 

[CQ:)]

Oh no Rae.
Sending Aussie hugs your way

 

[Fedup]

Rae

I am sorry to hear you are having such a hard and worrying time. Its not surprising you are a wreck. What you wrote sounds familiar in parts.

Hello everyone.

Been a while since I checked in since the baby bat was born, and unfortunate I’m back but this time not for me.

I’m pretty over whelmed and I’m grieving the future I had envisioned for her. Playing sports and walking down an aisle for her wedding one day.

My mother told me about the "Mother panic" and how it all affected her, she came home, went up to her bedroom and cried her eyes out, I would imagine much like you have. I forget what medication I was told they put me on but my mother and father were told how I would never mature mentally, I would not walk and as far as getting married or working went, they could forget it, it would never happen. The side effects I got from some of the old medication and what they thought was treatment at the time, leaves a lot to be desired and I am sure there are others here with other stories.

My future did not look good no matter what way you looked at it, but I guess I proved them wrong about a lot of things. I got older and I walked, ok it seems I got physio or some sort of therapy at first, as I got older I got a good education, mind you I did rebel at times, but it was boarding school. This might seem funny to you but I was sent to boarding school because I could not speak English? No, nothing to do with epilepsy or anything else, my first language is Irish not English. So I had to learn English, its like you learning French. After school I worked, I immigrated with a friend, I returned home after a long time and worked again. I started as a bar man and went on to management, I worked in some (very, a hotel is a hotel) hotels and all the time I was driving. Ok there were sports I could not play but only some.

So at this stage I guess I had proved them wrong on a few points and why? I will never forget it, I went for an appointment to my doctor, walked into his office with my parents, I was only about 10, I answered one or two questions and then sat there quietly while my parents bombarded him with question. Then he yelled at my parents to be quiet, I did not think anybody would ever say anything to my parents, then he turns to me and says you are the patient, you tell me how you are and remember you can do anything you want in life, you can sweep the roads if you want. I have never forgot that.

I have gone on to get married, this really surprised my mother, although not sure that getting married was a good idea, the wife seems to spend a lot of money, mainly mine, on getting her hair done and buying fancy clothes for herself. onder: why not her own money.onder:

So what I am trying to say is, even though its hard on you and always will be, never lose hope and always believe there is a future, no matter how dark it looks. Day comes after night eventually.

 

[Cint]

{{{HUGS}}} Rae. Sorry to hear of the dilemma you are facing. You are strong!

 

[CathyAnn31]

I'm so sorry to hear about what you and your little family is going through...I can't even begin to imagine. :hugs:

I know of a super strong mom who's baby had a stroke in the womb and has seizures, let me know if you'd like to reach out.

 

[Bernard]

I'm so sorry to hear this Rae. {Hugs}

 

[Rae1889]

Hello guys!

Just thought I’d update again!

Cielle is still on Topamax, and seems to be doing well with it. She’s been blowing all the doctors predictions out of the water and is talking up a storm in not 1, not 2, not 3, but 4 (!!!) languages (English, French, Ukrainian, and sign language) the deafness seems to have been a temporary thing but we kept up with the sign language anyway.

She started sitting up on her own at 11 months old, then stunned everyone by learning to crawl (standard hands and knees not butt scoot) at 1 year! We were told that would be impossible with one sided paralysis. Still no walking, but she did learn to pull herself up to stand on the day she turned 18 months old. Still needs to hold on and can’t stand without support. She has a cute little AFO and a hand splint, and the most amazing laugh.

So far no tonic clinics, though there are still some foot flutters and staring spells. Uncertain at this age if she’s having any simple partials as she’s sill too little to say, but I wouldn’t doubt it. She sometimes will say Ow a lot, or be unable to stop crying over seemingly nothing. Again, uncertain if this is just a toddler thing (first time mum) or not.

Hope everyone is doing well!

 

[Nakamova]

Thanks for the report Rae. It’s great to hear that your little one is exceeding all expectations. She's a champ just like her mom.

 

[Bernard]

Fantastic news. Sign language is amazing for non-verbal kids (babies/toddlers).

 

[Loopy Lou]

Hi Rae, i didn't know that you'd posted on here again!

I know about Cielle's situation from facebook, and have enjoyed seeing how amazing she is doing, and the adorable pics.

You're a great mum, you've had a lot to deal with and worry about, but Cielle is in the best possible hands.

:hugs: