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, May 16, 2007


Today we saw our Paed again. We haven't seen him in a very long time. Isla was so good when we saw him, although she didn't take too well to him giving her a stamp on her hand and made him wash it off LOL


The things we discussed:


*Walking - He had only met with Michael that morning, and Michael was telling him how well she's doing. Isla can now walk unaided for about 10 or so metres, it depends on what's in front of her. The more excited she is, the more likely she is to fall over. Isla is also able to stand unassisted with bare feet and can even take a few wobbly steps without her AFO's :)


*Toilet Training - He asked where we were at with it. He's of the same thinking as me, we need to get her balance sorted out before we can contemplate a potty. She won't be able to handle it if she's uncomfortable. We'll get there :)


*Weight - He's convinced that she's just petite, she's only just reached 11kgs so it's taken her about 18 months to gain 1.5kgs. He's not concerned about her weight.


*Seizures - We were given a referral for Liverpool Hospital for Clinical Neurophysiology. There she'll have a "Sleep Deprived EEG" to see whether these "episodes" are infact seizures or simply Isla just zoning out. He seems to think the latter as there's no convulsions etc associated with them. I do hope he's right.


and finally
*MRI results - I informed him that we'd been waiting since October for the results, so after a quick phone call to the Sydney Children's, his receptionist appears with the report in her hands :) It reads as follows:


CLINICAL HISTORY:
Spastic Diplegia. Born at 35weeks gestation. Second Trimester antepartum haemmorhage.


TECHNIQUE:
The following sequences were performed through the brain:
T1-weighter sagittals
T2, FLAIR and gradient-echo axials
Diffusion on weighted imaging
Axial true IR
MPRAGE


REPORT:
There is excessive abnormal signal (hyperintense on T2 and FLAIR and relatively hypointense on T1) in the peritrigonal periventricular white matter and centrum semi ovule bilaterally. There is also a reduction in the volume of the peritrigonal white matter bilaterally. Ventricular size is normal but there is a slightly wavy contour to the lateral wall of the trigone of the right lateral ventricle. The surface CSF spaces are normal in size and appearance. There is no shift of midline structures or other evidence of mass-effect. There is no structural abnormality. Myelination is appropriate for age. There is no evidence of space occupying lesion, extra-axial coillection or past parenchymal haemmorhage.


COMMENT:
The appearance are consistent with periventricular leucomalacia.


So there you go.


From the way Dr F explained it to me, it basically means that parts of the brain that supply the spinal column with fluid aren't perfect in Isla's brain. She has some tissue missing. It is most often found in children born prematurely (Below 37wks), with birth weight under 2.5kgs (Isla was 2585g). It could have been caused by those two factors. I may be because of a virus I had while I was pregnant (which I had while in hospital). It may have been caused by the placenta praevia - or a combination of all of the above...we'll never know.


Anyway, good news is that it won't get any worse. Also, if there are to be any more little people in this family, we are at the same risk level as the rest of the population :) He also said that I was a slight risk of PP again, although some other OB's have said that I'm at a 90% - who knows!

Tuesday, January 30, 2007

We had another physio session yesterday and little miss sunshine took 6 unaided steps to me, then back again to Michael and kept doing it for about 15 minutes! Would have to be my proudest moment ever! We didn't get to use the treadmill this time, not sure if it's working or not. We were doing a lot of work with bending and stretching!


He did suggest that perhaps Isla may be having "blank seizures" so we're waiting for a call from her neurologist to go over her MRI results as the wait to see him privately is over 3 months and through the clinic is about 6-8! Reassuring at least that he's so booked out - shows just how lucky we are to be able to see such a well respected professional.


Completely blown away by how well Isla is talking, it doesn't stop! She'd have more than 200 words now (easily) so glad that she's on track with her speech!


We have 2 two-year old molars that have come through. Can't wait for the next 2 to come through, she's never really been troubled by teething, but this time round she's so grizzly and the dribble is amazing!


We've (read: Isla!) has dropped her day-sleep and is bright-eyed and bushy-tailed from about 9am-7.30pm. It's not as bad as I thought it would be, she's such a happy go lucky little cherub, an absolute treasure to be around! I'm so pleased now that I stuck to my guns and mothered her the way I wanted to and didn't conform to routines and the like. I'm so happy that my choices are so beautifully reflected in the wonderful little girl I am privileged enough to call my daughter.


Life is good.