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.

Friday, December 30, 2005


Well, my little duck will be 1 this time next week!! I can't believe how much she's grown and each day she surprises me more and more!!


Not really much to update though, she's crawling like a champion and can go from one end of the house to the other! We play peek-a-boo and she crawls into different rooms looking for her Mummy and Daddy


Still hasn't put on much weight, seems to be stuck at 8kgs but eats like a horse. But still, she's getting longer!!


She went for her 1st swim on Xmas day and adored it loved it so much that her little jaw was chattering because it was getting cold in the water, but she kept giggling her head off...Today Nanny had to stay in the pool with her because she screamed when she tried to take her out!!


She's a real babbler now, baa is still her favourite, but also says Pa, Yum & I-yah which is her best effort at Isla - funny how she won't say Mum or Dad - Guess who runs this household


Her physio is going really well, we went from weekly visits, to fortnightly, now every three weeks. Our physio is so impressed with her progress, he, like the rest of us, is so very proud of her Isla is now pulling her self up on the furniture and is trying to stand! Although she's on her tippy-toes, she's doing it!!


Isla will be fitted for her AFO's on the day before her birthday (what a great present ) so we're not looking forward to this, but alas, it needs to be done!


Her naming day is in a week and a half, I still have nothing organised, have no idea who's coming, but hopefully it will be a good day

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...