Wednesday, June 7, 2006

Wednesday, June 07, 2006 First off the bat, I really like the Dr. He is really lovely and meticulous - what I like!!

He observed Isla for a while while she played with myself and Michael (physio). He looked at her hip xrays and said they were not valid because she was twisting so much when she had them taken in January (with three people holding her down!) he cannot rule out dysplacia in the right hip. She will need to have another set of hip xrays done but we're not sure when.

He felt her legs, Isla surprised us all by not fighting him like she always fights Michael! He noticed that her right leg is still significantly stiffer than her left. Both legs, however, are not loosing spasticity - they are actually becoming more spastic - that's so disheartening. Isla is also now standing higher on her tippy toes.

She is still cruising but won't stand unassisted. Isla *let* Michael pick her up again!! He held her hands above her head and walked behind her - she was actually taking steps - you should have seen the smile on Michaels face! he was beaming!! It's something that she's only recently started doing, but not very often. He said that it was a very good sign.

Also, Isla showed off her knee walking (another new addition) and Michael was very impressed, as he said it indicates that her pelvic stability is improving (phew!) meaning she'll better be able to stand/sit etc. Previously, her pelvic muscles were weak and she would fatigue quickly.

Dr L noticed that her thumbs are sitting at a strange angle, thinking that she may have spasticity in her hands as well, but her fine motor skills are fantastic, so it isn't a real concern of his at the moment.

What is the main concern to Dr L is contracture. Contractures occur when a muscle is not put through it's entire range of motion, causing tendon shortening. If this is what's happening for Isla, it means there will be less that they can do to help her.

Isla is a fantastic candidate for the Botox injections, however, because she seems to be going slightly downhill, he wants to give her the injections before she turns 2, which isn't government approved, however, there are many injections/medicines that children are given without Government approval.

It's a bit scary to take this next step into having the injections, but if it's going to help, then how can we not? For the injections, Isla will have to be admitted into the Children's Hospital at Randwick for the day. She will be given Laughing Gas while the procedure is done - that will be awful. The injections take about 3 weeks to start working and last about 6 months. She will more than likely have the serial casting (weekly) after the injections to maximise their effect. We see Dr L again when he gets back from Overseas.

Our next step is serial casting. Isla will be in plaster probably to the knees only, with her feet at 90 degree angles. We're still waiting to hear when and where we'll be having the casting done, it will more likely be at the hospital so that Michael has more people to help him as Isla was a tad difficult when having her thermoplastic splints made.

Dr L and Michael seem confident that Isla will get out of the plaster, they said it's not uncommon in children with the same sort of spasticity as Isla - so that'll be something to watch out for. Isla will have to have special orthotics made, called AFO's (Ankle Foot Orthotics) which will need to be made in the hospital by an Orthotist. They are really expensive (over $500 each) and will need to be altered in the hospital as well. We've filled out an application for funding for the splints, but, understandably, there's a subsantial waiting list for the funding. The AFO's will be the next step after the casting, but we have to wait for Isla's feet to grow big enough to fit into "proper" shoes as the AFO's need to be worn inside boots.

So, that's the story so far. As for me, feeling quite overwhelmed. Everything seemed really positive leading up to this appointment, and it's all quite crap now really. I'm not worried about the financial side of things, because we'll be able to pay for it all, with no drama's, but I'm just concerned that all her wonderful progress has stopped.

I'm sad because Im doing this all alone (so it seems as Ian forgot about her appointments) and I seem to be forever taking her to this specialist and that specialist, it's really exhausting - not physically but emotionally. Ian doesn't seem to understand, and nobody but the EB Forum girls really understand or appreciate what the CP rollercoaster is like.

I know that we are incredibly fortunate in how mild Isla's CP is, I saw first hand just how bad some children are while at the Paed Allied Health unit, but it doesnt stop the hurt inside. I just want my little duck to have every opportunity in life and I want her to be happy and healthy. I want to stop going to specialists, I want to stop trying to put her stupid splints on her, I want to be able to sit her on the floor and not have her fall backwards. I want her to be able to stand up properly. I want her to not get cramps in her legs. I want her to stop having brusies on her legs. I want her to be able to run and jump.

Tuesday, June 6, 2006

Tuesday, June 06, 2006

Neurologist appointment

Our appointment was for 3.15pm - yet we didn't get in to see Dr Andrews until almost 5pm Isla was getting a tad cranky and I was bored out of my mind - couldn't even watch Big Brother on my mobile because I'd run out of battery!!

Once we finally got in to see him, he studied Isla quite meticulously, he is indeed a very 'unique' man. He'd be asking me questions and interrupt himself by commenting on how cute Isla was!!

He said that in his opinion she was/is a "textbook diplegic" but he wants to prove this hypothesis (his words!) he's a bit of a crack up. Basically, he said that he *thinks* Isla has CP but there is a very slight chance that it is something else (hereditary) - but what that is he didn't elaborate. He said that in order to prove his theory, he'd need to do an MRI. He said that because Ian and I are so young (both 24) and that we're both healthy/no family history, it is probably more a case of 'bad luck' that Isla has CP.

He helped me understand what role my Placenta Praevia played in the CP. He said that the part of the babies brains that control movement develop most during 25-32weeks. I suffered 12 bleeds from 22-35 weeks. He asked when I first felt movement while pregnant, and commented how 15 weeks was early and then asked if Isla was active throughout the pregnancy, which she definitely was - even when I was bleeding she would tumble & jive He said that because Isla was so active, she would require more blood from the placenta to keep up with her, and that because I was loosing blood, the part that became compromised was her brain - and as the brain cells don't regenerate she was left with CP. He also said that the Placenta Praevia was also a case of 'bad luck'.

He said that he wants to definitely confirm it is CP so that Ian and I can go on TTC#2 without any worry - which is reassuring to me. He is going to book us in for an MRI at the Sydney Children's Hospital at Randwick sometime in October - which isn't too long to wait.
Overall, Im pretty pleased with how today went. He said that the majority of Diplegic children have no intellectual impairment, and he commented that she was very very bright

We see him again in November.

One thing he did that I thought was VERY weird, while he was asking me q's about Isla, he said, "Does she look like Dad?" and I said, "yes, she's Ian all over" and he wrote in his notes, "looks like Dad" what the???