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
02202222222222222222222202222222222200231

^^^^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.

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???

Monday, May 01, 2006


Another physio update!


We had all of Isla's measurements etc done today, she wasn't too pleased with having everything tugged and stretched so Michael had to estimate as best he could.


Next month will be very busy for us, we have an appointment with the Neurologist, Dr A, as well as a booking in the Botox clinic with Dr L.


We'll wait until she's been assessed by Dr L before considering serial plaster. Michael said that Dr L will see whether or not she will be a suitable candidate for the injections as it's extremely expensive ($450 for 100mL vile and children need anywhere from 1 -3 vials per visit, and not all children respond to it). Dr L will let us know whether to continue with the Thermoplastic splints or whether to move to hinged Ankle Foot Orthotics (AFO's) which is most likely to be the case. Dr L will also advise us on what further treatments, if any, Isla needs. Isla is still too young to have the Botox (Botulinum toxin) she'll have to wait until she is 2 - but given that she's 16 months on Saturday, it's not too long of a wait.


All a little daunting at the moment, but the reassuring thing is that Michael helps run the Clinic at Campbelltown Hospital, so while I swore black and blue that we'd NEVER go back there after the debarcle that was her Opthamologist appointment and CT scan, alas, we have to return, but at least this time there'll be a friendly face. (Isla even let Michael pick her up and play with her today!!)


Isla's pelvic stability is still a bit of an issue, but Michael seems to think it's more of a case of fatigue than lack of strength. We'll still continue on learning to sit properly and we have some new games to play that should help too.


After the clinic and the Neuro appointments, Isla will be scheduled in for an MRI - NOT LOOKING FORWARD TO THIS!!! She'll be under General Anaesthetic, which will be horrible, but it needs to be done.


Her standing and cruising is still going well. Her left foot is turning outwards now so we're going to try removing the right splint and only using the left to help stop the turn. We also have to look out for a trolley/barrow for her to walk behind. Last night and today she's trying to take her hands away to stand without assistance but she's not quite ready yet!!

Aunty Kate, Poppy, Daddy, Mummy & Isla all drove down to Victoria & South Australia for the Sprintcar Easter Trail.

Wet weather cancelled the first night's racing in Lara, so we stayed in Geelong and played cards and laughed all night long.

Next day we drove to Mt Gambier in South Australia - a good night's racing, lots of clay everywhere, which made pushing a pram a HUGE challenge.

Night 3 was in Warrnambool - oh how I love this place. It was absolutely FREEZING but good racing! Poor Isla was so wrapped up in layer after layer. Ian and I spent the night passing her from one another to use her body warmth LOL

We drove home along the Great Ocean Road. Will make another entry and post some pics of that. It was beautiful (again!) and I'm so glad that we took Isla. Can't wait to take her back when she's a bit bigger and can really appreciate it all.