We had physio for the first time since Botox yesterday.

Michael is VERY pleased with the results from the Botox (which are supposed to peak 3-4 weeks after injections). Her range of movement on the right went from -10 degrees to +2 degrees. She is also walking flatter than ever, and has less swing with her hips.

Happy Days.

As expected, Isla went into plaster on her right leg again - to help maximise the stretch in the muscles while the Botox is taking effect. She stunned us all by picking green plaster, we all expected her to go with pink or purple.

She's such a trooper, I can't remember how many times she's been in casts now, and she never complains.

Pics to come soon.

Far Out.

After a frustrating time on the phone yesterday with a woman from the Hospital Isla will be going to for Botox, I finally managed to confirm her admission for the 7th.

Then, yeseterday afternoon, I receive a letter from the hospital asking me to confirm Isla's admission for the 21st. Huh? I called them and explained she's booked in for the 7th, it was confirmed earlier in the morning. Lady I'm speaking to on the phone says, "Disregard the letter about the 21st, she is booked in and ready to go for the 7th".

Excellent.

Cue phone call exactly 2 minutes after I hang up from the Hospital, from Dr L's receptionist, "Hi Mrs F, I'm just calling to let you know Isla's Botox has been rescheduled for the 21st of May". Argh!

She went on to explain that there is no anaesthetist there on the 7th, and there are only 3 children being done on that day, so they're postponing it for 2 weeks.

Now I have to call Michael the Physio and re-schedule the months worth of appointments for casting we made for her following the botox, and see if she can get in to see him again before the 21st. Thing is, I think Michael was considering another week of casting before she had botox on the 2nd of June (the original date we were given) - we'll see what he says when I call him today.

Starting to think all these changes are for a reason??????

I picked these up yesterday while Isla was at Kindy. I can't believe how big they are, my little girl isn't so little anymore!

We have a physio appointment on Wednesday to see how Isla is settling in with the new orthotics. She chose a big pair of skater shoes to wear with them last night, complete with skull and crossbones!

Her stuttering seems to be easing off a little (thankfully) but occasionally she gets a bit caught up. Still need to speak to Speechie about it.

Little Miss is still very excited about her "baby sister", and is insisting she's going to be called "Arina" as in ballerina! We picked up the new baby carseat this week, and I put some gorgeous peacock themed linen on layby for her too. Now all we need is to wait 16 weeks, and to put the cot together and we're set! How exciting!

We saw Michael for the first time in almost 6 months yesterday. He's very pleased with Isla's progress. She can now stand up on her own (without holding on to anything) and is walking well and not falling over as much.

Michael agreed with Ian and I, in that Isla walks with more control when she doesn't have her orthotics on, but it's coming at a price. The bottom of her feet are collapsing on the side, and Dr L is concerned that when she's older the bones may fuse together and she'll require surgery. I'll have to take a photo of her feet to better explain...

They're concerned about her legs, she's always had higher tone in her right leg (and it is marginally shorter than the left) but, and here's the curveball, she leads with her right which means it's her dominant leg...she should be leading with her left as it's the less effected leg, but it's weaker.

The plan is this, 1st of May, Isla is on the list to go to the Sydney Children's Hospital for the Botox injections. In the meantime, they're going to lock the hinge on the AFO's so that she can't lean forward as much with them on. She has a tendency to crouch when she walks (only slightly, I'd not really noticed until it was pointed out to me yesterday by Michael) so locking the hinge will make her stand up straighter. We need to do some strengthening exercises for her hamstrings, as the concern is that she won't be able to walk after having the botox (it will weaken her muscles initially) so we need to have her ready for that.

They give them laughing gas, but the mask needs to be held on the entire time and both Michael and I aren't too sure she'd cope very well with that. Dr L suggested pethadine as it's injected and can also knock little ones out, so there's another possibility, but it's a bit much to have to think of right now, and I honestly don't know how she'll react to it all.

When she walks with the AFO's on there's a lot of swivelling in her trunk, which is essentially because her left hand side isn't really working as well as it should, and she has to twist her trunk to swing her left side around. Again, she shouldn't be doing this as the left side is meant to be the stronger side.

We're going to increase physio appointments to every 2ish weeks to try and fix these issues. Poor little mite.

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, January 17, 2007


The last three days have been wonderful :)


Isla is progressing SO well, we're all thrilled with how she's doing developmentally.


So many words and sentences now, Dorothy, Kath, Hannah, Michael, Claire are the new favourite words! Isla has gone drawing crazy, and constantly asks for her "papey & draw" for paper & crayons! Too cute!


Isla managed to take 2 unaided steps on Monday and Tuesday night - it was absolutely amazing! Her standing is improving too, she's a lot more balanced than ever, I think it's partly the new shoes - they give her great stability and fit the orthotics perfectly! We're going to look for a basketball hoop for Isla, seems she only wants to stand/walk if there's a ball involved!


Still seeing Michael, our physio, he's very happy with her progress, he's hoping to have her on the treadmill next week! Would have been last week but it wasn't working. We're still going to OT too, but Isla has taken a disliking to Mel and does nothing but cry until she leaves the room - then cracks up! Not sure how much benefit it will be in all honesty. Mel said that it's really for her schooling days so that she has the co-ordination to do up buttons and use scissors etc - so I guess it is important to have that mirroring under control.


Botox Clinic is the 28th of March - very nervous leading up to this, I know she'll benefit a great deal from the injections, it's just having them done that's the hard part, but still there's lots of little ones much worse off than our little poppet, I guess you still have to count your blessings - right?


Nothing much else is happening around here at the moment. Ian is giving up smoking, so he's been going to bed around 8pm! The house is very quiet when the two of them are in dreamland!

Multidisciplinary screening clinic assessment report - 31.08.06


Background: Medical History: Isla was born via an elective caesarean for placenta praevia at 35 weeks gestation. Her Apgar scores were 9(1) and 9(5) and her birth-weight was 2585g. Her mother experienced multiple (12 in total) haemorrhages during her pregnancy, with the onset being at 22 weeks. There were no complications during the delivery.


Isla began sitting (“w” sitting) at 11 months and crawling at 12 months. Her paediatrician is Dr F. She has been seeing Dr L, rehab specialist for Botox and Dr A, neurologist.


She has been diagnosed with spastic diplegia. She is an only child.


ASSESSMENT Isla’s was assessed using the Bayley Scales of Infant and Toddler Development 3rd Ed. This test looks at different areas of development, and gives a picture of the child’s skills at one point in time, providing information to guide intervention. Repeat assessment at a later age gives further information about the rate of development.


1. Cognitive skills (Occupational therapy) The cognitive scale looks at how your child think, reacts and learns about the world around him/her. Tasks measure interest in new things, attention to familiar and unfamiliar objects and play with toys, problem solving, puzzle skills, pretend play and pre-academic skills.


Isla performed at a 16-18 month level which was on the 25th percentile for her corrected age, and within the normal range. Isla was able to place pegs in a pegboard, blocks in a cup, and place a single puzzle piece. She enjoyed listening to a story , and demonstrated relational play on herself. She had some difficulty with finding hidden toys, and was not able to complete puzzles.


2. Speech and language skills (speech Pathology) The language scale has two parts. Receptive Communication looks at how well your child recognises sounds and how much your child understands spoken words and directions.


Expressive Communication looks at how well your child communicates using sounds, gestures or words. Overall Isla displayed skills on the 8th percentile representing average development. Today Isla presented as a bubbly little girl, who was very communicative with the therapists. She readily performed for social attention and had engaging interaction skills.


Receptive Communication (Understanding): Isla performed at a 10-12 month level. Today Isla showed that she could understand the meaning of “no!” and respond to simple social requests (eg “blow a kiss”). Isla did not identify any of tour toys (eg ‘ball…cup…doll”) , but she did identify familiar people/things (eg “where’s your Mum?”). Isla is not yet able to identify pictures in books when named by an adult, although at home Isla is beginning to find familiar pictures (eg “cat”) in her favourite book.


Expressive communication (talking): Isla performed at a 16-18 month level. Today Isla used single-word approximations (eg “tuh-dah”), babbled in play (eg “ba-ba” and readily imitated babble and words. Isla said 3 words for us today (ie “Mum”, “ta”) and at home she has a reported vocabulary of approximately 15 words. She shakes her head and says ‘no!” to protest. Isla combines gesture and words to communicate her needs (eg puts hands upwards and says “Mum” to be picked up). Isla did not name any of our toys/pictures today. She was unable to answer “yes/no” questions correctly.


Feeding: Isla eats a variety of textured family foods and can drink from a sipper cup/pop top. She is also learning (open) cup drinking, which is a fantastic skill for building tongue-tip strength. Today Isla was observed to drool saliva more form the right side of her lips, because she is teething.


3. Motor (Occupational therapy & Physiotherapy) The motor scale has two parts. The fine motor part looks at how well your child can use his/her hands and fingers to make things happen. Tasks include reaching, grasping, block building and drawing. The gross motor part looks at how well your child can move his/her body. Skills include rolling, sitting walking, climbing, balance and ball skills.


Overall Isla displays skills on the 5th percentile representing low average development. This is a combination score reflecting average fine motor development, and delayed gross motor development.


Fine Motor (Occupational therapy) 17-19 month level. Isla demonstrated a mild increase in tone in her upper limbs, presenting as a stiff quality, and clumsiness rather than abnormal patterns of movement. Currently she is managing age appropriate activities, but may have difficulty as the requirements for precise control increase. Isla is able to hold a pencil in her palm, and scribble spontaneously, she can copy a stroke but not with direction. Isla is able to isolate her index fingers to point, and use a pincer to place pellets into a container, and post coins into a money box. She does not have the motor control to stack blocks on top of each other.


Gross Motor (Physiotherapy): Isla is a charming little girl who is using crawling as her main form of mobility. She crawls with an increased lumbar lordosis and with her legs abducted and externally rotated. When she sits she tends to “w” sit and is unable to sit with her legs out in long sitting or with her legs crossed . She occasionally walks up on her knees. Isla can pull herself up to stand but not yet through ½ kneeling. She was previously up on her toes when she stood or cruised but it was difficult to assess today as Isla was in bilateral short leg casts. She did however, display a tendency to incline forwards in an attempt to stand up on her toes. She has two more weeks of serial casting at PAHU and then is scheduled for a review with Dr Lowe (paediatric rehab specialist) in Botox clinic. She has increased extensor tone with the lower limbs having more tone than the upper limbs and her right side is slightly more then the left. Her deep tendon reflexes are brisk. She is currently receiving Physiotherapy with Michael in Campbelltown. Isla would benefit from ongoing physiotherapy to improve her gross motor skills as well as continue to monitor her tone.


4. Social - Emotional (occupational therapy): Isla is a delightful little girl who was a little unwell and irritable today. She tries to feed herself with a spoon and fork, and can drink small amounts from a cup. Isla assists with dressing, enjoys her bath, but W-sits for stability. She attends Family Day Care 2 days a week.


Summary and recommendations: 1. Discussion with Michael , treating Physiotherapist, regarding ongoing Physiotherapy management. Attend Botox Clinic at PAHU on the 20.09006 and AFO Clinic on 26.09.06 2. Isla will be offered Occupational therapy and Speech Pathology intervention through Campbelltown PAHU. She will be placed on our waiting list as high priority

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.

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!!

Friday, December 30, 2005


Well, my little duck will be 1 this time next week!! I can't believe how much she's grown and each day she surprises me more and more!!


Not really much to update though, she's crawling like a champion and can go from one end of the house to the other! We play peek-a-boo and she crawls into different rooms looking for her Mummy and Daddy


Still hasn't put on much weight, seems to be stuck at 8kgs but eats like a horse. But still, she's getting longer!!


She went for her 1st swim on Xmas day and adored it loved it so much that her little jaw was chattering because it was getting cold in the water, but she kept giggling her head off...Today Nanny had to stay in the pool with her because she screamed when she tried to take her out!!


She's a real babbler now, baa is still her favourite, but also says Pa, Yum & I-yah which is her best effort at Isla - funny how she won't say Mum or Dad - Guess who runs this household


Her physio is going really well, we went from weekly visits, to fortnightly, now every three weeks. Our physio is so impressed with her progress, he, like the rest of us, is so very proud of her Isla is now pulling her self up on the furniture and is trying to stand! Although she's on her tippy-toes, she's doing it!!


Isla will be fitted for her AFO's on the day before her birthday (what a great present ) so we're not looking forward to this, but alas, it needs to be done!


Her naming day is in a week and a half, I still have nothing organised, have no idea who's coming, but hopefully it will be a good day

Tuesday, November 15, 2005


Well, today was the day, we took Isla to the physiotherapist to be assessed for Cerebral Palsy.


She was so tired when we got there, and screamed in frustration, so he didnt get the chance to look her over properly, but he did say that there is increased muscle tone in her lower legs which could possibly be Cerebral Palsy, but without further assessment and diagnostic testing, couldn't confirm. He said whether it is CP or a gross motor development delay, the treatment is the same. He gave us lots of exercises for her to do to try to relax the muscles in her calves and to try to bend her foot into the 'proper' position (Her feet are pointed, like she's on tippy-toes) We now have a weekly session with him, and he is fabulous (and married to a girl I know as it turns out!)


So we were feeling confident going in to see the Paediatrician straight afterwards. He checked her again, and is still concerned about her muscle tone and said that he is convinced that she has Cerebral Palsy Poor little munchkin. He said that while there is signs of improvement from our last consultation (2 weeks ago) it's still not enough for him to think that it is a developmental delay.


Next step, this week sometime (awaiting call to find out when exactly) Isla has to be admitted to Hospital for bloodwork and a CT scan The Paed is going to meet us at the hospital to go over the results.


He told us it very common in prem babies and those with low birth weights and would have come from lack of oxygen during her delivery - - Which is news to me, I had a GA so Ian couldnt be in with me, but we were told she had no problems at birth (Apgar score of 9) and she went straight on to the ward. The physio was very surprised that it wasnt picked up when Isla was checked by the paediatrician before we were discharged from the hospital. I might have to chase this up with the hospital...


It still doesnt seem real, it will hit me when I least expect it I guess.


I am happy though, because other than her little legs not doing exactly what they're meant to, she's a very happy and healthy little girl, and I love her more than the stars in the sky...


I think that's all from us for now...

Wednesday, November 02, 2005


I took my Isla to the paed. today to have her tongue checked out because she's tongue tied.
He looked at her and said, "it's no real problem and will fix itself, I wouldnt worry about it"


Great I thought. So he asked if he could weigh her, and thats when the nightmare began.


She's 10 months on Sunday and still doesnt sit unassisted - so she wouldnt sit on his scale things properly. Thats when he noticed that her legs are always rigid..He asked if it was always the way, and yes, it has been ever since she was born. My ECHN said it was a sign that she wants to walk.


He tested her reflexes then tells me, he thinks she has cerebral palsy.
I'm sitting here with her now, and Im a mess, she see's the tears and laughs at me, cheeky little bugger.


I was told to make an urgent appointment with a paed. physio - who cant see me until next Tuesday - the wait is going to kill me.


The Paed. said that there is a slight chance that it's not CP and that she'll correct herself by 12 months, but it didnt seem likely.


My god, I went in there to have her tongue checked out now it seems my whole world is collapsing. I should point out though, that he said that it's not mental, she's very bright according to him, it's just that she has too much muscle tone in her lower limbs and her reflexes dont respond properly. So we have to have lots of time in the zoo pillow, lots of time in the bath and throw out the walker and the jolly jumper...


I dont know what to do, I know I have to be positive and think that it will only be a minor set back and that she'll fix herself, but what if she doesnt? I dont know what happens if it is diagnosed as Cp - at the moment I think too much info will scare me too much.