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!

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, 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.

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!!

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!!

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