Tuesday, June 26, 2007


Big day today! We took Poppy to the airport this morning. He's off to England and America for 2 months and Isla was fitted for new AFO's this afternoon as well!


Rob (the orthotist) couldn't believe how much she's grown since October! The AFO's she has now should fit her for another year but she's already busting out of them! Only 1 more week and we'll have a brand new pair - which means new shoes, I hope we can find "flashy shoes" in bigger sizes!


Casting went well. Isla didn't kick or pull which was what we were worried about. She cried a bit though, but once she was able to put one of her helpers and shoes back on she was fine while Brendon did the other cast.


Isla is such an entertainer these days, she has us in fits of laughter all day long. Her vocabulary is incredible, she has so many words and loves to sing and dance :o)


Isla is walking everywhere and it's amazing! Her walk is a little unconventional, she can't really go in a straight line, but it's so wonderful to watch. We've had to ditch the pram (Isla's choice not ours!) and she does her best to walk everywhere we go.


A few weeks ago we were part of a Paed training exam at C'town Hosptial. Isla and I went down for some "short exams" where some Paed's in training from Westmead and Sydney Children's Hospital. Over 2.5hours, Isla was seen by 4 different Paeds who had to determine what condition she had. All they were told was "Isla is 2.5yrs old. She was born at 35 weeks and has only just learnt to walk in the last month. Please assess"


It was really good to see the different ways Dr's worked, they all came to the same (and correct) conclusion but they all came to their answer differently, it was really interesting. One of the Dr's being assessed was amazing, and I wished I paid attention to where she was from because she had the best bedside manner - she was unreal, I wish there were more dr's like her!


Isla was weighed and measured on this day too - 10.2kgs fully dressed :o( And 79cms tall so she's in the lowest percentile for height and weight. It was strange to hear them say she was short because we get so many comments on how tall she is.

Tuesday, September 26, 2006


YIKES!


We went to the AFO Clinic today to have Isla assessed for the Orthotics she'll need to wear to help her walk. They look like what Forrest Gump wore when he was a kid but not metal & leather


She'll need one for each leg, and will more than likely have to wear them forever The Orthotist said that he wanted to cast her today and have her in them in 2 weeks time (they take 2 weeks to make!)


So our hospital physiotherapist called the PAPD who we lodged an application for funding with to see whether we could go ahead with having them made. We put in a form for funding back in June but we're still another 3-8 months down the waiting list So the Orthotist gave us the choice of calling them ourselves and pestering them until they put us on top of the list (this could take a month of calling daily), we could simply wait until we received the funding or we could fork out the $$$ ourselves - the actual dollar figure - $1484!!! I nearly fell off my chair! Mum is loaning us the $$$ until we get our bond back and can repay her.


With the PAPD we pay the first $100 and the government pays the rest, I was told they would only cost $500 each - but holy moly! Isla's will have a special locking mechanism so that she can have the hinge locked when she's learning in them then unlocked so that she'll have more movement.


They'll only fit for 12 months and only if she doesn't have a major growth spurt in that time!


So we had them made, they'll be sent to our physio when they're completed so we'll go there (and pay out more hard earned!) to have them fitted properly!


...it never ends!!...

Wednesday, August 30, 2006 Isla had her 3rd round of plastering. We lasted a little longer with the 2nd ones, but Isla was forming a blister on her heel under the 2nd plasters, so once again they were taken off early. But glad we did remove them, gave her heels a chance to recover for this lot!

Wednesday, August 23, 2006


We had round 2 of the serial casting today and Isla was an angel!! We weren't able to leave the first plasters on the full week as Isla was very unsettled and only managed less than 4hrs sleep over the weekend.


We removed them at 4.30am on Sunday after hours of screaming. Thankfully, Michael was very pleased that Isla had lasted so long!


While we would have loved to have kept them on much longer, we've already noticed a difference in the way she stood without the casts on - a HUGE improvement!! She's standing a little flatter!! Fingers crossed these ones will stay on longer than the last ones!!


Much love

Friday, August 18, 2006


Isla had her first round of serial casting on Wednesday!


She was a very brave little girl, I can only imagine how scary & uncomfortable it must have been for her :( Michael was there and was super fast at plastering her legs - I was very very grateful that he was there - his presence tends to calm me!!


Nanny also came (but I think it was more to hold Mummy's hand than Isla's ;) ) I had planned on taking pictures of the process, but it just wasn't possible.


So far, we're getting there slowly. She's only just started pulling herself up on the furniture again, this was after 2 days of laying on the floor - not able to move anywhere. She seems happy enough today, enjoying a lovely snooze at the moment!


Plasters come of on Wednesday morning, and another set put on..great...


Another WOOHOO!! to Gabby who has taken a huge 10 steps since our last update, very proud of you Miss Gabby!!


Also, to Coops who sat for 10 seconds - way to go Champ!!!


Much Love to all

Tuesday, August 01, 2006


Isla had an assessment at Campbelltown Hospital today. She had to be assessed before they could start the serial casting process. Isla was a little naughty and uncooperative during the assessment, very out of character for her.


We met the Head Physiotherapist from the hospital, Rosalee, and she is lovely. She sat in on the assessment and will be there to assist Priya with each lot of casting. We *think* Michael will be there as well. Rosalee said that Michael has indicated that he wants to continue with Isla's care - and we definitely plan on seeing him privately still - even though we have been given the option of completely switching her physio care to the hospital.


Isla has great strength in her legs and trunk, so they feel that the "ordinary" plaster casts won't hold her, so Isla's casts will be made of fibreglass. This means that they will have to be removed with the saw (and they have already told me it will scare the living daylights out of her) Her casts will be changed weekly at the hospital, and she cannot have a bath in between as the casts are not waterproof, so it means sponge-baths only, which is very sad because Isla loves to relax and have a long play in the bath.


She's learning so much now, she happily sings along to Old MacDonald - saying e-i-e-i-e-i-e-i!! She's also learning to count, says "waa, two, ree!"


Settling is proving a problem, she absolutely hates being put on her back - and has even started kicking me when I try to change her nappy/clothes...will get it all checked on Saturday when she has her immunisations.

Wednesday, July 26, 2006


I finally managed to get hold of the MRI desk at the Children's Hospital to find out when Isla's MRI will be performed - October 5th! Not too far away. We're meant to wait until the November Neuro Clinic at Campbelltown Hospital to find out the results, but I think we'll see Dr A privately at his rooms to get the results. I've had enough waiting.


Speaking of waiting, still waiting to hear back from the Physio's at the hospital re: serial casting. I'm told it would be in the next two weeks, but every time I call her to make a booking she's in a Clinic and calls back when I'm at work! I've made friend's with a few Mum's whose kid's have had plaster, so I'm sort of prepared for what we'll go through, but it's still going to be rough on all involved.


Still having a hard time with the walking, lost a little confidence this week after slipping while pulling herself up on the table. Gave herself an awful bruise under her left eye (which in turn gave her a black eye) so she's not too keen on standing near anything lately.


Still searching for the right type of walker/push toy to help her get moving. At the moment, Isla is content to knee-walk behind empty boxes.


Must have cried a million tears this week for little Isla and what the future holds for her. It's hardest when I see other little one's walking around (sepecially learning to walk) it all comes so easily, yet my little Darling can't do it - and it hurts. It makes me angry, it makes me hurt, a pain unlike anything I've ever known. I know it's a part of life (for other children at least) but I think I'll just have to distance myself from it all - at least until I have a clearer idea at what Isla's future will entail..


Isla has discovered her voice! She can now say: Mum, Dad, Nana, Pop Pop, ball, Tigger, Isla, uh-oh, sit, yay, yum, hiss (for snake), baa (for sheep), moo (for Nanny & Poppy's dog), ta (for thank-you), yep, no, pretty (or preeeeeeeeeeeeeeeety LOL) and hi! Clever little poppet!


Christmas & Birthday presents this year will be a challenge I think. I'm thinking maybe a rocking horse for her, but I'm not too sure how she'll go with her balance. Hopefully Isla will be making the transition to a big girls bed around Christmas time, so maybe we'll put in a request for bed linen etc.


3
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^^^^That's from Isla^^^^who thinks she's pretty clever being able to reach the keyboard!!

Isla has started whistling too. It's just the cutest thing!


Big hugs to everyone

Tuesday, July 11, 2006 Our Latest Physio Update. Isla performed wonderfully, Michael was very pleased with her hand movements, they were a tad jerky before, but she was grabbing toys with ease today, so he was very pleased!


Her new boots are fantastic, Isla was standing flat footed (although a little stooped) while playing, so again, Michael was very pleased!!


We're going to the next Botox Clinic on September 20th, just waiting for an actual time now. Michael is going to contact the Physio's at the hospital to get us in for the plasters before we have the Clinic, so we can see whether they are beneficial for her or not.


Our funding for the AFO's has been lodged, but we will probably have at least a 12 month wait on that. Not sure when exactly we'll be getting them, I think we're trying casting first and if that fails, we'll move on to the AFO's- in the meantime, the boots are doing a fantastic job in pulling her feet flat. All in all, we're doing really well.


Michael has noticed a definite improvement in Isla in all areas. He is particularly pleased with her speech (now says Mum, Dad, Nana, Pa, Pretty, Tigger, Yep and No) but we're still going to see the Speechie at the Multidisc which is at the end of August - very exciting! In Michael's words, we've done a "fantastic job with her" which is so nice to hear. Michael said today that these next six months before Isla turns 2 are VERY important as we have to try really hard to keep her progressing so that she doesn't become frustrated with not being able to walk like most children of her age.


I'm still a tad overwhelmed by everything, I don't think that I'll ever really be able to accept Isla's CP. I don't really think that anyone really understands what it is we're going through, all they see is her smiling face and it's easy to forget that she has a problem. The tone won't ever disappear, she'll have it for her entire life, it's just a matter of helping her deal with it the best she can so that she has all the opportunities in life.


Next step - track down Dr A and find out when in October our MRI is, then book into his November Clinic at C'town, and then back to see Michael in 1 months time!!

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.