Monday, December 11, 2006
Monday, December 11, 2006
Wednesday, December 6th we said goodbye to Uncle Steve.
A beautiful service, which I think he would have really loved.
To Aunty Helen, Ashlie, Lindsay, Mitchell, Paul & Sally - you're all in our thoughts. We love you all. xx
Tuesday, December 5, 2006
Tuesday, December 05, 2006
We had our 2nd appointment with the Speechie (Kate) and the OT (Mel).
It went really well, Isla did really well, even though she was a bit cranky at first thanks to sleeping in!
Kate is really pleased with how Isla is doing, and said that her tongue tie isn't an issue for her! It was something that I'd always been concerned about, but she assured me that because Isla is able to make "T" sounds it won't be an issue for her. Kate gave us a list of action verbs for us to encourage Isla to use. Kate doesn't think Isla needs any more Speechie appointments, but will meet up with us again in February to see how she's progressing. :D
OT, well, it's all very confusing on that front. Mel has noticed that Isla has 'tremors' in her hands when she's concentrating, and said in order to get rid of them, we need to encourage her to crawl :S Isla's been crawling for 13 months so I'm a bit baffled as to why we need to push her to do it now, but I will discuss it with Michael. Seems like we'd be going backwards making her crawl now that she's started walking with her trolley
Monday, December 4, 2006
Monday, December 04, 2006
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.
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
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.
Tuesday, November 14, 2006
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
Tuesday, September 26, 2006
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
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 5, 2006
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!
Thursday, August 31, 2006
Thursday, August 31, 2006 Isla had her multi-disciplinary screening at Campbelltown Hospital today.
They use something called the Bayley Scale, where they ask a lot of questions and plot the answers accordingly (I guess it's similar to the Edinburgh Scale for ante-natal screening) Isla was cranky (she's not well) so personally, I think she may have performed/responded much better than she did..but here are the results:
Gross Motor Skills - functioning at 10month level - her biggest delay Fine Motor Skills - functioning at 18 month level - right on track
Cognitive Skills - functioning at 17 month level - so slightly behind
The Speechie thinks Isla is behind with her speech because she only heard her say "no" and "ta" - but she can say "Mum, Dad, Nana, Pop, Pen, Ball, Bath (nearly), Dance (nearly), Isla, Tigger, teddy, no, yep, wow, uh-oh, hiss (for snake), baa (for sheep), eieio for Old Mc Donald, pretty (almost), yum, at, hi, bye..." so I think it's crap.
They also said that her behavioural delay (only by a couple of months) is because it "appears to be a case of what Isla wants she gets" so we have to try to break her of this habit, and make her ask us or tell us (point/say) what it is that she wants rather than solving the problem for her.
We also have to point out more things when we read to her (she scored low points because she'd rather play on her own than with us - when it comes to reading etc) and we also need to do more puzzles with her, although she did really well with the ones they had. We also need to encourage her to be more interactive with her toys...
So, as if we weren't already busy enough and completely sick of that bloody hospital - now, in addition to the weekly Physio sessions, the Botox and Rehabilitation sessions, Isla will have to attend Speech Pathology & Occupational Therapy.
I'm really angry and upset, I can't be around people, I just don't have it in me anymore. I'm so mad and hurt that there are so many struggles that Isla has to go through while others don't. It's completely unfair. I'm sick of everyone taking everything for granted.
Wednesday, August 30, 2006
Wednesday, August 30, 2006 Isla had her 3rd round of plastering. We lasted a little longer with the 2nd ones, but Isla was forming a blister on her heel under the 2nd plasters, so once again they were taken off early. But glad we did remove them, gave her heels a chance to recover for this lot!
Thursday, August 24, 2006
Thursday, August 24, 2006
Isla can stand alone!! Woot Woot!
We tried this on Wednesday and she shocked herself! Will there be a repeat performance? Stay tuned! LOL
Wednesday, August 23, 2006
Wednesday, August 23, 2006
We had round 2 of the serial casting today and Isla was an angel!! We weren't able to leave the first plasters on the full week as Isla was very unsettled and only managed less than 4hrs sleep over the weekend.
We removed them at 4.30am on Sunday after hours of screaming. Thankfully, Michael was very pleased that Isla had lasted so long!
While we would have loved to have kept them on much longer, we've already noticed a difference in the way she stood without the casts on - a HUGE improvement!! She's standing a little flatter!! Fingers crossed these ones will stay on longer than the last ones!!
Friday, August 18, 2006
Friday, August 18, 2006
Isla had her first round of serial casting on Wednesday!
She was a very brave little girl, I can only imagine how scary & uncomfortable it must have been for her :( Michael was there and was super fast at plastering her legs - I was very very grateful that he was there - his presence tends to calm me!!
Nanny also came (but I think it was more to hold Mummy's hand than Isla's ;) ) I had planned on taking pictures of the process, but it just wasn't possible.
So far, we're getting there slowly. She's only just started pulling herself up on the furniture again, this was after 2 days of laying on the floor - not able to move anywhere. She seems happy enough today, enjoying a lovely snooze at the moment!
Plasters come of on Wednesday morning, and another set put on..great...
Another WOOHOO!! to Gabby who has taken a huge 10 steps since our last update, very proud of you Miss Gabby!!
Also, to Coops who sat for 10 seconds - way to go Champ!!!
Much Love to all
Friday, August 11, 2006
Friday, August 11, 2006
Congratulations Michelle on the birth of Noah Ethan!!!!
Welcome to the world little man, can't wait to meet you and your brothers!!
Monday, August 7, 2006
Monday, August 07, 2006
A little mention today for our two friends...
To the gorgeous Elle and Andie, all the best for your appointments today - we'll be thinking of you both. Our fingers and toes are crossed for you.
To the gorgeous little Gabby Goo - we're so proud of you!! 2 steps!! You are so clever!!!
ALLY & ISLAxxx
Tuesday, August 1, 2006
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
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.
^^^^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
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 7, 2006
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.
Tuesday, June 6, 2006
Tuesday, June 06, 2006
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, May 1, 2006
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!!
Wednesday, April 19, 2006
Aunty Kate, Poppy, Daddy, Mummy & Isla all drove down to Victoria & South Australia for the Sprintcar Easter Trail.
Wet weather cancelled the first night's racing in Lara, so we stayed in Geelong and played cards and laughed all night long.
Next day we drove to Mt Gambier in South Australia - a good night's racing, lots of clay everywhere, which made pushing a pram a HUGE challenge.
Night 3 was in Warrnambool - oh how I love this place. It was absolutely FREEZING but good racing! Poor Isla was so wrapped up in layer after layer. Ian and I spent the night passing her from one another to use her body warmth LOL
We drove home along the Great Ocean Road. Will make another entry and post some pics of that. It was beautiful (again!) and I'm so glad that we took Isla. Can't wait to take her back when she's a bit bigger and can really appreciate it all.
Monday, March 20, 2006
Monday, March 20, 2006
Missy Moo had her appointment with the Opthamologist Dr H today, who we had to wait 2 1/2 hours to see - *insert cranky smilie here* Lucky he was really nice!
She was a very brave girl, despite the fact that he literally had her eye ball pushing out of her eye. Poor little mite soldiered on, although Mummy's ears are still ringing!!
The good news is that he said that her eyes are fine WOOT WOOT!! One worry to cross off the list! She is slightly long-sighted (just like her Mummy) but he believes that it will correct itself by the time she's ready for school!
We don't have to worry about having her eyes checked for another 3 1/2 years - thankfully, we're in no rush to go through it again!
We're waiting to be contacted by the Co-ordinator for Pathways so we can get involved with the Spastic Centre and then hopefully be accepted into the Cerebral Palsy Clinic at either Sydney Children's Hospital or Westmead. Fingers crossed we get in so we can kiss the Paed goodbye!
She's doing really well in all departments now, eating is still an issue, but Isla now has 11 teeth - with another 2 on the verge of cutting through! She's sleeping like a bandit now, so I think that's helping her keep the weight on!
Still trying to walk, little dare devil is even standing without holding on - I think she'd like to see her Mum with a pace-maker by the time Im 25!
Will post another physio update soon!
Monday, February 27, 2006
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