Thursday, November 24, 2005

CT Scan

Thursday, November 24, 2005

Yesterday had to be the most heartbreaking & exhausting day of my life.

I took Isla to the hospital for her CT scan and blood tests. We were admitted at 9.30am and went for our CT scan at 12.40..She spat out most of the drops that they gave her to sedate her, so she wouldnt sleep for the CT - after 1 hour and 45 minutes of me trying to rock her to sleep!

So back up to the ward we went to have a cannula put in and her blood tests...they'd left the numbing patches on for 3 hours and her skin was red-raw poor little thing, they're meant to be left on for 45 mins max...

It took 4 people to hold her down to get the blood tests done (and this was with Isla wrapped in a bed sheet with only one arm out!) She cried to hard and for so long and there was nothing I could do about it but cry along with her....The cannula and blood tests took 20 minutes...

So back to Radiology to have the CT - this time she was given sedation through an IV - which only made her drowsy and floppy but worked well enough to get the CT done. It was so scary, they had a Paediatrician stay with her the whole time in case something went wrong because they weren't sure how much sedation they'd given her and thought she may overdose

Anyways, our Paediatrician met us at 5pm, both of us utterly exhausted and dying to leave...He gave us the fabulous news that the Cerebral Palsy is so mild that it there is absolutely no indication of it in her brain (it's that mild & minute) I was ecstatic, he checked her legs again and said that there's still stiffness, but it's getting better. He said with physio it should be corrected almost 100% and if not, then she'll have Botox injections to relax her muscles. He said we wouldnt have to see him again for a few months He showed her reflexes to some medical students and described her as having "True Spastic Depligia" but he didnt say it to me.

He's still worried about her weight, she's only 7.8kgs So he said he'd better see her again in 3 weeks just to check her weight.

All her bloodwork came back completely normal but we still have to wait 3 weeks for her chromosome inspection to come back

Tuesday, November 15, 2005

Tuesday, November 15, 2005

Well, today was the day, we took Isla to the physiotherapist to be assessed for Cerebral Palsy.

She was so tired when we got there, and screamed in frustration, so he didnt get the chance to look her over properly, but he did say that there is increased muscle tone in her lower legs which could possibly be Cerebral Palsy, but without further assessment and diagnostic testing, couldn't confirm. He said whether it is CP or a gross motor development delay, the treatment is the same. He gave us lots of exercises for her to do to try to relax the muscles in her calves and to try to bend her foot into the 'proper' position (Her feet are pointed, like she's on tippy-toes) We now have a weekly session with him, and he is fabulous (and married to a girl I know as it turns out!)

So we were feeling confident going in to see the Paediatrician straight afterwards. He checked her again, and is still concerned about her muscle tone and said that he is convinced that she has Cerebral Palsy Poor little munchkin. He said that while there is signs of improvement from our last consultation (2 weeks ago) it's still not enough for him to think that it is a developmental delay.

Next step, this week sometime (awaiting call to find out when exactly) Isla has to be admitted to Hospital for bloodwork and a CT scan The Paed is going to meet us at the hospital to go over the results.

He told us it very common in prem babies and those with low birth weights and would have come from lack of oxygen during her delivery - - Which is news to me, I had a GA so Ian couldnt be in with me, but we were told she had no problems at birth (Apgar score of 9) and she went straight on to the ward. The physio was very surprised that it wasnt picked up when Isla was checked by the paediatrician before we were discharged from the hospital. I might have to chase this up with the hospital...

It still doesnt seem real, it will hit me when I least expect it I guess.

I am happy though, because other than her little legs not doing exactly what they're meant to, she's a very happy and healthy little girl, and I love her more than the stars in the sky...

I think that's all from us for now...

Thursday, November 10, 2005

Thursday, November 10, 2005

Well, there's still another 5 days til we see the Paed and the physio, but my little angel is trying desperately to crawl!!

It's just the cutest thing. The Paed said she wasnt crawling properly (she could only go backwards) because of the problem with her legs. She's now gone 9 days without the walker and the Jolly Jumper and she's up on all fours and bunny hopping!!

What a daggy proud Mum I am...

We're still doing our best to stay positive, and each day her sitting and crawling attempts are getting better and better, it gives us more hope, but we're trying not to get ahead of ourselves.

We know that we're blessed by just having our little Isla - regardless of whether her legs work properly or not, she's the greatest thing in our lives and we'll do whatever it takes to help her get on the move

Wednesday, November 2, 2005

Wednesday, November 02, 2005

I took my Isla to the paed. today to have her tongue checked out because she's tongue tied.
He looked at her and said, "it's no real problem and will fix itself, I wouldnt worry about it"

Great I thought. So he asked if he could weigh her, and thats when the nightmare began.

She's 10 months on Sunday and still doesnt sit unassisted - so she wouldnt sit on his scale things properly. Thats when he noticed that her legs are always rigid..He asked if it was always the way, and yes, it has been ever since she was born. My ECHN said it was a sign that she wants to walk.

He tested her reflexes then tells me, he thinks she has cerebral palsy.
I'm sitting here with her now, and Im a mess, she see's the tears and laughs at me, cheeky little bugger.

I was told to make an urgent appointment with a paed. physio - who cant see me until next Tuesday - the wait is going to kill me.

The Paed. said that there is a slight chance that it's not CP and that she'll correct herself by 12 months, but it didnt seem likely.

My god, I went in there to have her tongue checked out now it seems my whole world is collapsing. I should point out though, that he said that it's not mental, she's very bright according to him, it's just that she has too much muscle tone in her lower limbs and her reflexes dont respond properly. So we have to have lots of time in the zoo pillow, lots of time in the bath and throw out the walker and the jolly jumper...

I dont know what to do, I know I have to be positive and think that it will only be a minor set back and that she'll fix herself, but what if she doesnt? I dont know what happens if it is diagnosed as Cp - at the moment I think too much info will scare me too much.