Sunday, June 28, 2009

Thank You Church!

We wanted to make a little video of Ashlea using her new walker and show it in church as a way of saying thank you to everyone who contributed to buying the walker for us (and to show them what they actually spent their money on!).

We made the video this afternoon and hope to show it in church next week.


video

Friday, June 26, 2009

Official 3 Year Developmental Reports

I received the girls official reports from their 3 year developmental assessments.

Ashlea was assessed using the Reynell-Zinkin-Scales for Young Visually Handicapped Children. I don't know much about the scale and what it means, but this is how Ashlea compares to other visually impaired children.

Social adaptation 11 - 14 months
Sensori-motor understanding 10 - 12 months
Exploration of Environment 1.9 - 2 years
Response to sound and verbal comprehension 1.6 - 1.9 years
Vocalisation and expressive language 2.3 - 2.5 years (!!!!)
Expressive language (vocabulary and content) < 2 years

Now remember this is compared to other visually impaired children rather than 'neuro-typical' children. The big question is...how far delayed are other visually impaired children? I would like to know how she compares overall to a 'regular' child.

Audrey (oops - did I accidentally sneak another real name in there?) was assessed using the Bayley-III Scales of Infant Development. Her report doesn't contain a lot of information other than:

Cognitive Scale - within normal range
Language Scale - good for her age
Motor Scale - appropriately developed for her age

I'm off to google the Reynell-Zinkin Scale but so far I haven't had much luck. On another note, Ashlea had a good time in the walker today. She can now go FORWARDS as well as backwards. Very exciting. Hopefully I'll be able to get some video over the weekend.

Tuesday, June 23, 2009

Eye Clinic

Today Ashlea had her regular eye review. It has been at least 18 months since she has seen an ophthalmologist (as the Professor we used to see has retired), and 12 months since her last eye Evaluation Under Anaesthetic (EUA).

When we got there we were seen by the orthoptist who tested her vision using the teller acuity cards. These give a general idea of distance vision. With her glasses on Ashlea is usually 6/60 (legally blind - what you and I can see at 60m she would need to be 6m away from...although it is confusing because there is no way she can actually see 6m). Today they measured her at 6/36 (better) but I don't think it was that accurate - I think they moved the cards a lot closer towards the end. She had this same test last week through the RIDBC and she was 6/60. So no change in her vision from that point. One interesting thing I asked them to do was to do the test without her glasses on to try and get an idea of how much they help her - she scored 6/500+ (very BAD). So at least we know it is worth persevering with keeping the glasses on!

(As an aside...if you are interested in getting an idea of what the different vision levels look like click here).

So, Ashlea tolerated that part of the assessment OK, mainly because a) the orthoptist was female, and b) no one touched her. After that we talked to the doctor and then they put the drops in her eyes to examine them (insert loud screaming at this point).

When the time came for the examination it was a total waste of time...mainly because a) the doctor was male, and b) he tried to get near her (not even touching!). One thing kind of important for an eye exam is keeping your eyes OPEN. Unfortunately when you spend the whole time screaming and crying it usually means your eyes are clamped tightly SHUT. The doctor wasn't able to examine her eyes at all, so we are scheduling another EUA for later this year. I am not thrilled about the idea of another GA, but I would really like her prescription checked seeing as she is so dependent on her glasses. She also needs the glaucoma in her bad eye checked - although the doctor did reassure me today that it isn't possible for the eye to keep swelling to the point of explosion...kind of nice to know.

I am hoping we can kill a couple of birds with the one stone and get her EUA, her botox AND a dental exam done all under the one anaesthetic. What do you think the chances of such coordination at a hospital are???

The GREAT news from today is that it was a SUNNY day. We took the walker for a spin in the backyard, and while she wasn't unhappy to be in it, she did have something else on her mind...."BIKE!"

Sunday, June 21, 2009

It's Here! It's Here!

Ashlea's walker has arrived!




















The kidwalk arrived on Friday. So far we have tried it out inside the house - which can be a bit tricky seeing as it is quite bulky. Today we test drove it in our garage which was a bit better as there was more open space for Ashlea to potter around.




















What we really need is for it to STOP RAINING so we can try it in the backyard. That is what we are looking forward to most - Ashlea being able to have some independence in the backyard and be out there pottering around with her sisters.

Where is that bloke El Nino and his drought???

Thursday, June 18, 2009

A lovely story

Tonight a friend of mine told me a story I found really touching.

She told me about her ex-highschool-boyfriend, and how EVERY week at church, instead of sitting up the back with all his friends, he would choose to go and sit in the middle of the church next to the boy (same age) with down syndrome. And how, 15 years later, they all still go to that same church, and this man (and his whole family now) STILL sit with this man with down syndrome. Every week.

What a beautiful thing to do, and what a beautiful person to be able to see someone for who they are and not for their disabilities. This is something that breaks my heart for little Ashlea* - knowing that people will always struggle to see past her disabilities and see who she really is. Even her therapists at times struggle to see past what they are treating. Some see spasticity, others see kidney problems, still others see developmental delays. It is a rare person who sees past all this and really SEES Ashlea, really 'gets' her.

I don't know either of the people in this story from a bar of soap, but as a SN mum I found it really lovely. I just hope and pray that some equally kind souls will come into Ashlea's life as she is growing up.

* yes, I am using her real name. It is a PITA to keep using code names, especially when the paranoid android my husband (who is the one that worries about identity theft etc) DOESN'T EVEN READ MY BLOG! So I figure what he doesn't know...

Monday, June 15, 2009

Big School

Sigh...my baby is growing up! Miss E is off to Big School next year. This morning we went to an open day at the school she will attend - it is hard to imagine her in school uniform and attending school, but I'm sure it will be here before we know it. The school she will attend is our local public school and it happens to have a disability support unit, kinda cool hey? So, potentially, all 3 of my girls could attend school there in the future.

Choosing a school for E and Big A seems so simple...Find out what the local school is and enrol! Choosing a school for Little A seems much harder!

So far my school options for Little A are:
William Rose (special school)
Alice Betteridge (special school)
Jasper Road (public school with disability unit)

So far I have only visited Jasper Road. The support unit looks great. I just don't know if it will be supportive enough for her, especially with her vision impairment. The other two schools on my list are special schools that cater for children with a sensory impairment so at the moment I am thinking that may be a better option. Although if Little A continues to make good progress then who knows...maybe she could manage in the support class?

The good thing about Jasper Road is that it allows for integration with the rest of the school. The children with special needs participate in school assembly, the playground, pretty much every school activity. They even go on school camp in year 5 (GULP).

Thankfully I have another 2 years to make the decision!

As for E, the big day is getting closer and closer! I think she was a bit worried before going to the open day today, but she quite enjoyed looking around the school and she REALLY loved seeing her BFF from preschool last year who now attends the school.

Now I just have to psyche myself up for being at school by 9am for the next however many years!!

Thursday, June 11, 2009

Happy Birthday M

Today is M's birthday...45...how did that happen??? He was a young lad of but 29 when we first got together!

So of course the girls and I made him a cake. I fear this cake may be a borderline cake wreck... I was a bit out of my depth trying to make the white chocolate hearts, but I don't think it looked too bad in the end. It is an ice cream cake, with melted white chocolate over the top (tinted pink) and covered in white chocolate hearts (some tinted pink).

Monday, June 8, 2009

A Wii bit of fun!

I hope everyone had a great long weekend (those who had one anyway). On the weekend my sister (Aunty C) decided she NEEDED to spend her K-Rudd stimulus package on a Wii. Seeing as we live with Aunty C we were more than happy for her to do this!

We spent yesterday afternoon playing different Wii games - it was pretty fun. Although the irony is not lost on us that rather than being outside playing actual tennis (we have a half size court as our backyard) we spent the afternoon indoors playing Wii tennis. Surprisingly I won Wii bowling. I have never won a bowling game in my life! No surprises that I seem to be better at virtual sport than the real thing.

It was all fun and games until we plugged in the Wii Fit program. This 'game' calculates your 'Wii Age' based on your level of fitness. The program estimated my age as 56. FIFTY.SIX.

I don't want to play anymore!

Sunday, June 7, 2009

Bike!

Yesterday was the first sunny day in what seems like a month here in Sydney, We made the most of it and played outside. I took Little A for a ride on the 'bike'. She LOVED it. I think we have started something though...when we came inside she was NOT happy and almost had a little tantrum. For the rest of the afternoon she kept declaring she wanted to go "OUTSIDE" to go on the "BIKE".

Take a look...

video

Saturday, June 6, 2009

AFOs

We picked up Little A's new AFOs this week...she seems to be tolerating them a bit better than her old ones. She kept them on for 3 hours yesterday before saying "shoes off".

Here is a pic...














Of course we then had to buy some new shoes to accommodate them. I don't think the lady in the shoe shop quite new what to make of us. She kept wanting to measure Little A's foot, and was a bit taken aback when I told her just to measure the AFO. I picked these shoes as (surprisingly) they were the easiest to get a foot and an orthotic into.




















This was our first experience buying shoes with AFOs and I can see why other parents who have children with AFOs find it so stressful. It was obviously not what the shop assistant was used to dealing with, and I pretty much had to take charge and tell her how to help us. Sometimes you have to have a pretty thick skin being a SN mum, otherwise something simple like buying shoes can trigger the sadness that comes with being reminded (again and again) that your child is different.

Wednesday, June 3, 2009

Another 5 1/2 hours lost to the ED...

But we are home and Little A is fine - so that is the main thing.

When we first arrived we were taken straight in to one of the resuscitation bays - it soon became obvious from A's demonstration of her VERY healthy lungs (screaming blue murder whenever the doctor even approached her, let alone touched her) that we didn't really need that kind of attention! So we got moved...to the corridor. It was so busy at the hospital - I have never seen it like that. Every bed full and at least 5 of us on beds in the corridor.

It seems the treatment for accidental minirin overdose is fluid restriction and observation. 'Fortunately' because of A's poor kidney function I think her kidneys don't absorb and use the drug particularly well...which probably meant it didn't effect her too much. So after some torture (blood pressure and blood draw) we were allowed to come home. I think she would have had to have been VERY sick to get admitted as the whole hospital is full.

My only complaint - which of course I AM going to share with you - was with one doctor. Don't get me wrong - he took good care of us, but when he asked me...

"So how does a mix up like that occur?" with that judgemental TONE I got kinda MAD.

How does it occur? Because
a) we're human
and b) we mix all her medications up in 10ml of water - some medications she has the whole 10ml, others she has just 1ml...not hard to see how we could get mixed up

I should have reminded him about the time when Little A was in hospital and not only was she given the wrong dose of an antibiotic - she was given the wrong antibiotic as well...by the medical staff. I wish I had of thought of it at the time so I could have asked him if he had ever accidentally given the wrong dose or drug to a patient!

Feels good to have that little rant. I can move on now!

Big A has croup at the moment....hopefully it won't necessitate a repeat trip to the ED later tonight - I am NOT keen to go back!

Aagghhh....PANIC!!!

Just realised M accidentally gave Little A the wrong dose of her medication this morning! This medication (minirin) controls her fluid / electrolyte balance....so we could end up in strife. I have put a call in to the endocrine registrar and am waiting for them to call me back. Am REALLY hoping we don't need to go to emergency.

Damn it..just got the call. We are going to emergency.

Monday, June 1, 2009

New toys!

I love getting new toys and gadgets, and today we received a parcel in the mail containing some fun things.

The big gadget at the back is called the "Speech Therapist". You can record 4 different messages on it and play them back. The idea of the mirror is that the child can see their mouth moving in the mirror and see how to make the sounds (not quite sure how that works when a) the child can't make the sounds, and b) the child is blind...but anyway). E has had great fun all afternoon recording messages for Little A to playback. The only downside that I can see to this one is that you need an adult to switch between the 4 messages. So for the moment Little A can only play back one message repeatedly until we come and change to another message.

The smaller communicator with the red button is called a 'Step by Step' communicator. I really like this one. You can record up to 2 minutes of speech on it. So far each of us has recorded a short greeting for Little A and she can play each of them back by pressing the button. I think she really likes hearing all the different voices talking to her. Each time she hits the switch a new person says hello to her!

I'm not really sure how to use these communication aids for best effect yet (feel free to leave some ideas if you have any). I like the idea I saw on Inky Ed's blog about recording the child's news or 'show and tell' onto it and then allowing the child to play it for the class. I don't really want Little A to use the devices instead of actually speaking though...I'd rather use them to teach her new words / correct pronunciation...that sort of thing. I am open to suggestions....

The other 2 buttons are just switches which will come in very handy as we have a few switch adapted toys but only one switch. My favourite switch adapted gadget is the Ipod adapter. We have our ipod and adapter permanently plugged into the stereo. It is set so that when Little A hits the switch the music starts and the next time she hits the switch the music stops. She LOVES playing with this. We keep it set up on her table so she knows where to find it by herself.

I think we have one more gadget on back order - a power box. This will allow us to plug in any "powered" device and turn it on and off with one of the big coloured switches. I'm not sure what device we will use it for yet...again, feel free to leave suggestions.