Monday, December 04, 2006


YaHoOoOoOoOoOoOoOoOoOoO!


Today in the bank (of all places!!) Isla stood on her own, completely unaided and bent over to rummage through her bag! She would have been standing for at least 30 seconds before realising!! She kept doing it too! I was so pleased that Ian was there with us and was able to see it.


THEN


as if that wasn't HUGE enough, Isla decided when we got home that she'd take off and walk behind her wooden trolley! 45 minutes of walking like a seasoned pro'!! Just incredible.


So proud of my little girl!

Thursday, November 30, 2006


Just wanted to do an update on my wonderful Uncle Steve.


He's not doing too well now and we've been told he doesn't have much longer left to fight.


To my beautiful Uncle Steve -- We love you more than words can ever express.

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, November 14, 2006


So much has happened and I haven't had the chance to come in here and update.


We were so incredibly lucky to have a very special and beautiful person, Erin, organise a Charity Golf Day to raise funds for Isla. Erin is, without question, the most wonderful and selfless person on the face of this Earth. She put in so much hard work and so many hours which culminated in an amazing day, all for our little Isla.


We flew up to Brisbane on Thursday Nov 2nd, the Golf day was on the 3rd. It was incredible... :)


While in BrisVegas, we met the gorgeous Rel & Gabs!! Was definitely a highlight of our trip! Little Gabby is such an inspiration to us, she is almost 3 and has Ataxic Cerebral Palsy. Her improvements in the past 6 or so months have been absolutely mindblowing!!!

Hmmm what else has been going on....

Isla has lots of new words, too many to name, about 70 - 80 all up :) She has her gorgeous new AFO's too, no longer cries when they're being put on, but starts to pull on her shoe laces to take them off once she's had enough of them! She wears them for anywhere between 8-12 hours a day depending on when she wakes up! They are definitely making a difference though. Even though she rarely stands up in them, once they're off she can stand completely flat footed and cruises most of the time :)


The entry above is what we were given today at the PAHU - the assessment report from the Multidisc. screeing...


We had our first appointment with our speechie Kate, and our OT Melinda who are both really lovely!! Isla did pretty well until she cracked it when Ian took the playdough off her!


They're stoked with her fine motor skills, they're bang on where they should be :D Her gross motor skills are being looked after by Michael but they're improving ever so slightly every single day :)


Speechie is over the moon with little Missy's language skills since the screening! We're still going to see her just to get some tips on how we can best encourage her language, but they're stoked with what we've been doing with her.


OT is concerned about her associated tone/mirroring. She tried to show us some exercises to do today but Isla wasn't playing the game! Basically, we need to make the two halves of her brain function separately. To do this, we have to make her reach across her body for objects by holding down one side and putting toys etc on the other side...seems easy enough...in theory...we'll see both Kate & Mel every two weeks.

Tuesday, September 26, 2006


YIKES!


We went to the AFO Clinic today to have Isla assessed for the Orthotics she'll need to wear to help her walk. They look like what Forrest Gump wore when he was a kid but not metal & leather


She'll need one for each leg, and will more than likely have to wear them forever The Orthotist said that he wanted to cast her today and have her in them in 2 weeks time (they take 2 weeks to make!)


So our hospital physiotherapist called the PAPD who we lodged an application for funding with to see whether we could go ahead with having them made. We put in a form for funding back in June but we're still another 3-8 months down the waiting list So the Orthotist gave us the choice of calling them ourselves and pestering them until they put us on top of the list (this could take a month of calling daily), we could simply wait until we received the funding or we could fork out the $$$ ourselves - the actual dollar figure - $1484!!! I nearly fell off my chair! Mum is loaning us the $$$ until we get our bond back and can repay her.


With the PAPD we pay the first $100 and the government pays the rest, I was told they would only cost $500 each - but holy moly! Isla's will have a special locking mechanism so that she can have the hinge locked when she's learning in them then unlocked so that she'll have more movement.


They'll only fit for 12 months and only if she doesn't have a major growth spurt in that time!


So we had them made, they'll be sent to our physio when they're completed so we'll go there (and pay out more hard earned!) to have them fitted properly!


...it never ends!!...

Wednesday, September 20, 2006


Dr L was running late as usual...we didn't get in to see him until 12 and our appointment was for 10.45!


Anyway he's happy with the progress Isla has made since he saw her last time (in June I think) He said that the casting made a real difference so he's not going to go ahead with Botox just yet because Isla responded so well to the casting he's going to wait and see what the AFO Clinic says next Tuesday and try to get her into some AFO's ASAP. He wants them to have a fixed hinge so that she can wear them like her Thermoplastic Splints that Michael made her, but they'll also be able to move freely when she's built her confidence up more.


He was very pleased with her knee walking because he said that she's opening up her hip joint well (most kids with Spastic Diplegia can't do this) so he said it's a good sign (he smiled a lot while she did it!) He thinks she'll do well with the AFO's and will see her again at his next Clinic which isn't until March next year!


He explained that it's better for us to try the AFO before the Botox because she'd need to wear the AFO's once she's had the injections anyway (and will probably need injections in her ankles as well to stop them from rolling) so she'll need to be used to it - and also because it's non-invasive.


So it all went pretty well. Michael and Dr L said to just continue putting her boots on her (will have to get her another pair, these ones are ruined already!) and encouraging her to walk!

Tuesday, September 05, 2006


Welcome to the World little Ava!


Congratulations to Ian's big sister Meghann & Husband Graham, who had a little girl early this morning!! Can't wait to meet you little Miss!