Hi Everyone!


I've decided to blog here rather than Isla's other website, as it's a bit all over the place.


Today was a very busy one for us, we had to collect some hip x-rays before the Botox Clinic with Dr L at 8.30am. We only had a short wait before we went in to see Dr Lowe, Mel, Michael and 3 med students. Isla was observed without her shoes & AFO's initially where Dr L noted that her hips are affected by the way she W sits. Upon checking her hip xray, her left hip is at 3.0 which is within the normal range, her right hip, however, is at 13.8 which is not normal. We need to keep an eye on it as it is partially dislocating.


Dr L has decided that Isla will definitely require Botulinum Toxin injections this year. His Clinic is booked out until November, but he says she will have it after then. The reason for Isla needing the botox is that she still has quite increased tone in the calves and her hamstrings, which, despite her walking quite well, is putting extra pressure on her little hips.


So, now we wait and see whether Dr L is returning to the Hospital in the next 3 months, otherwise we need to book in to see him in his private rooms to organise for the Botox in late November/December.


We left Campbelltown Hospital and set off for Westmead Childrens Hospital, where we had to see Professor O regarding possible blank seizures.


It took forever to find a parking spot, then a good 15 minutes walking around the hospital only to find we were in the wrong building (despite being given directions from Enquiries). In the end 2 maintenance works had to take us to the right spot with their security passes. Once again we were on the wrong level and couldn't find the right suite.


Once we finally found where we were going, we saw Professor O, who is really lovely. Nowhere near as nutty as the other Neuro's we've seen. He gave Isla a full check, head circumference of 48cms, he's concerned about her weight and height, so we'll have to go back to see Dr F about. Isla was a bit cranky by this stage, and didn't take too kindly to having her shoes and "helpers" taken off again! She walked a little without them, but not too far. He checked her eyes, her reflexes, palette - everything, he was very thorough.


Isla had one of her "turns" while he was examining her, he doesn't think there's anything behind them, rather he thinks she's just "daydreaming" which is good news. He's going to schedule her in for a EEG in the near future, have to wait for his office to call us with a date.


Isla sang and danced for him, she counted to 16 which he was impressed by. He said that her overall cognitive abilities & language skills are well above average, stating that she is very smart.


So all in all not too bad, considering!


Happy birthday to Aunty Helen for today!

Wednesday, February 14, 2007
25th of July...


That's when we can get the NEXT AVAILABLE appointment with a Neuro...Holy Moly.


I was told by the secretary that if the seizures become worse, we can call back and they'll try and schedule us an urgent appointment...


Will try Andrews again...!

Wednesday, February 07, 2007

So we visited a new GP on Saturday, as we still haven't heard from the Neuro regarding the MRI results. The GP confirmed that it does definitely sound like blank seizures, and has given us a non-specific referral to Westmead Children's Hospital for whatever Neuro can see us the fastest so Isla can have an EEG which will measure the volts/electrical activity within her brain (or something equally as interesting) Sounds like lots of fun!


Botox Clinic has changed to the 21st of March now, although Michael isn't sure whether they'll go ahead with the injections or wait and see. She's progressing really well with the help of the AFO's so I think they may be reluctant to change anything at the moment. I'm very pleased with this attitude, the less invasive the better I say!


We had OT today, and again another comment about how "Michael wouldn't like to see you sitting like that Isla" Argh! It's either W sit or lay on the floor...take your pick! Isla was an angel for Mel today though - we did lots of activities and Mel was blown away by how well she's speaking.


I was under the impression that we were seeing the Speechie today too, but that's not for another 2 weeks. Kate will be stoked! I sat down the other night (thinking we had Speech Pathology as well as OT) and wrote out a list of all the words & phrases Isla can say = we're up to 247 :D BUT since then (Sunday) I've remembered a whole lot more that she can say so I'd estimate we're closer to 260+ :D :D I would like Kate to continually review Isla though. I'm not sure whether her vocabulary is on track/behind/advanced. I do know though, that her pronunciation is a lot better than a lot of children of similar age or slightly older which is wonderful.


We're reading a lot of stories at the moment, we read the Tale of Jemima Puddleduck, which was an Easter gift from last year from gorgeous Aunty Jess. We also read some Donald Duck book in the waiting room at the Paediatric Allied Health Unit...It's really making a difference with her, she's identifying so many different things now! I hope I'm never ever too busy to sit down and read to my little girl.


2 years old is a gorgeous age, Isla is such a wonderful companion, so happy, so free spirited - but becoming more headstrong (must be Ian's genes coming through! LOL) No's are becoming more adamant, but I think she's just testing the waters a little...time will tell...


Much love to everyone!


A big HAPPY BIRTHDAY to Master Coops! Hope you had a wonderful day!

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, February 27, 2006


Latest update from Isla's Paediatrician....


He's still concerned about the tone in her legs, and seems quite concerned that Im not a blubbering mess, it's as though he feels that Im not taking it seriously :S


Well, little Miss has FINALLY managed to GAIN weight!! WOOT WOOT! She's now 8.4kgs! The heaviest she's been since October 2005 :D


Other news, we have to visit a Paediatric Eye Clinic with Dr H. He's from Westmead Children's and is apparently very good. Im not sure exactly why she's being referred to him. Paed said something about "just checking her field of vision" but didn't say why...hmmm.


We are also waiting a call back from Dr A who is one of the top Neurologists. He's from the Sydney Childrens Hospital at Randwick, and he spends 1 day a month at Campbelltown Hospital. Apparently the wait to see him is quite long, so we may travel to Randwick to get it over and done with. Isla will be sent for an MRI to see what damage there is to her brain, despite the CT scan coming back all clear. She has to have a GA for this, so it won't be as stressful as the last visit to hospital for her, poor little mite.


I think that's all for now...((((HUGS)))) to all