Saturday, October 31, 2009

Saturday 6

I've been feeling 'kind of grumpy' lately (understatement) so rather than whinge to you all I am going to try and take the opposite approach and list 6 things that have made me smile this week. I was going to do a Friday 5 yesterday but ran out of time...so I'll do a Saturday 6 today.

Here it is...6 things that made me smile this week...

1. I won a free chocolate bar this week - can't complain about that! I eat a lot of chocolate and I often think when they have competitions 'How can I not win, I am such a faithful consumer'. Well this week it finally happened - I won!

2. You have no idea how much of a laugh the girls and I got out of this picture of a gift wrapped chicken on the Compassion Christmas catalogue we received this week...



3.We received our confirmation letter for the Lord Mayor's New Years Eve picnic. We went last year and it was fantastic. Even better - this year we are allowed to bring Aunty Carolin.

4. Carolin saw these while on her trip overseas - Jesus bandaids and a magnetic dress-up Jesus for the fridge. Only in America!



5. The Australian version of Beauty and the Geek - hilarious!

6. It's the weekend, the sun is shining and I have almost caught up on my washing.

What made you smile this week?

Wednesday, October 28, 2009

Special Exposure Wednesday






Is W-sitting genetic???

Don't forget to check out all the other Special Exposure Wednesday pics here.

Tuesday, October 27, 2009

Dreams

Last night I had a dream that Ashlea was walking. She had just started to learn to take some independent steps and was toddling around.

I remember thinking how amazing the botox was to have had such an incredible effect on her.

I remember being so relieved and excited that things had turned out so well compared to what the doctors had predicted.

I even remember worrying (see I even do it in my dreams) how she would be able to walk once the botox wore off.

Ever have a dream like that? Where it takes a few minutes after you have woken up to realise that it was all just a dream?

Back to reality now.

Sunday, October 25, 2009

New IFSP

Ashlea had a new IFSP (Individual Family Service Plan) drawn up on Friday at the Spastic Centre. We have been on the waiting list for the last few months - and I was expecting to wait even longer, however Ashlea's botox and her upcoming transition to preschool mean that she has been picked up for services sooner than expected. My memory is so bad that I thought we were just going in for a post-botox physio appoinment only to be reminded on arrival that it was actually her IFSP meeting - which means the issues I raised as being of highest importance to be dealt with were really just the issues that I could think of on the day. Hopefully I wasn't too far off the mark.

They seem to be using a new type of IFSP - some Canadian Occupational something or other - can't remember the exact name. It is a bit different in that it has several sections where the family picks areas that need working on, and then at the end you grade all the areas you talked about from 1 - 10 (least important to most important). You then pick your top 5 and they are the ones that get worked on with this IFSP.

So our top 5 - that I came up with off the top of my head and just hope in hindsight are the most important things at present...

1. Obtaining a cognitive assessment for Ashlea. Ever since she had her physical GMFCS assessment I have been wondering if there is a cognitive equivalent. Knowing where she is cognitively - and more importantly what her potential might be - is important for many of the other goals we have chosen to work on, and further in the future will be important for school selection.

2. Bathing. As I said in my recent post Ashlea is getting too big for me to lift in and out of the bath - we need to find an alternative arrangement.

3. Carrying and transferring issues - same as above - I can't keep carrying Ashlea around. This will cover issues such as wheelchairs, working on standing and standing transfers. This is also a little dependent on her cognitive assessment - how much can she understand and therefore co-operate when I ask her to do something? For example, if she had no cognitive impairment I could ask her to crawl to her bed, then stand up against the bed (with help) and then I'd just have to lift her that last step rather than lift her off the floor and carry her the whole way.

4. Developing play skills. Ashlea is very curious about the world but still has quite limited play skills. She often just bashes toys or can only do simple press button activities. We want to work on doing more things with her hands, and also work on developing imaginitive play. I think preschool is going to be GREAT for this.

5. Ashlea's access to the backyard. We need a ramp for Ashlea to access the backyard. I am also hoping we can work on her use of the walking frame - more independence and control - especially coming in to summer. I want her to be able to be outside joining in the play when Emma and Audrey are out there.

I hope I haven't left out anything glaringly obvious. I am hoping that seeing as goal number 2 (showering) should be fairly easy to achieve, that we will be able to tick that one off and possibly move on to goal number 6 on our sheet - not that I have any idea what that was.

Thursday, October 22, 2009

While you were sleeping...

Ashlea had her EUA this week - Evaluation (of the Eyes) Under Anaesthesia. It went smoothly and no new surprises were discovered - always a good thing!

She hated the eye drops and the anaesthesia - I had to hold her down as usual and almost anaesthetised myself by putting my face too close to hers while she was sucking in the gas. Otherwise it all went very well.

Her prescription in her good eye seems to have improved somewhat - although I am a bit confused about this and need to clarify with her doctor. He seemed to be implying that she doesn't need to wear her glasses anymore. This doesn't mean she is no longer legally blind - just that the vision she has, she doesn't need glasses for. If that even makes sense.

Her bad eye is a bit of a problem. She has no vision in this eye, but has quite bad glaucoma - her eye pressure was 40 (should be under 21). I had been saying to the doctor for awhile that it was getting worse - but you know how sometimes you get the feeling that they don't quite believe you until they do their special test themselves. Well, he did the test. He agreed with my diagnosis. It has been getting worse - and in spite of his registrar telling me at our previous visit that there is no way the eye can rupture - he said yesterday that it is at risk of 'trauma'. I am assuming 'trauma' is his euphemism for 'bursting open and the contents spilling out'. Seeing as no one (least of all ME who would be the most likely witness) wants this, Ashlea is starting on eye drops at night to see if it makes a difference. If the eye drops don't work she may have to have laser surgery to help with the problem. I am keen to try the least invasive option first - especially as if they go overboard with the laser treatment her eye could shrink right down and become really small and then need a prosthesis to look normal - a whole other headache I don't even want to have to consider right now. We follow up with the eye doctor in 6 weeks.

While she was asleep the dentist also came for a quick look at her teeth and his report was better than expected. She has all 20 teeth more or less through and no signs of tooth decay! Her teeth are obviously 'scaley' and not great looking because of her prematurity and kidney problems, but all things considered there are no major dramas there for now. I can't believe I forgot to ask him about her habit of grinding her teeth - I guess she can't have done too much damage to them yet because he didn't say anything about it. We go back and see him in 6 months. I managed to get Audrey in to see him too - we are using the reason of 'needing to see the other twin's teeth for comparison' to get her seen in the clinic rather than me having to pay for her to go to a private dentist. Can I work the system or what???



We don't have any more procedures planned for this year and I am starting to get excited that we may go a whole calendar year without anyone having an admission to hospital. I shouldn't say those words out loud should I???

Wednesday, October 21, 2009

Special Exposure Wednesday

Look who's giving the illusion of playing together!!



The children were out in the backyard when Ashlea walked over (not sure whether on purpose or she just ended up there - she's not very good at going where she wants yet) to see what Audrey was doing in the sandpit. She even put her hand in - but only until she felt the sand at which point the hand came straight back out again!



I love that in this walker Ashlea can stand at a table or activity and participate - I am looking forward to her being able to do more of this at preschool next year.


Don't forget to check out all the other great Special Exposure Wednesday photos here.


PS RPA Where Are They Now? starts tonight on Channel 9 at 8:30pm. I'm not sure what episode number we are...will let you know when I find out.

Monday, October 19, 2009

Weighty Matters

Miss Ashlea is growing. When we saw the kidney specialist in June she decided that Ashlea wasn't growing enough and that we should increase her calories. Well the increased calories have done the trick - she has gained 1.5kg in 3 months - going from 12.5kg to 14kg. This means she is getting heavy. Too heavy for me to lift.

For some reason this difference between 12kg and 14kg has been enough to make me realise...

I can't keep carrying her around all the time.

Ashlea isn't just a young child that I carry everywhere (which has been my attitude up until now). She is a disabled young child that needs assistance with all forms of mobility. For some reason that whole vision of the future that includes wheelchairs, walking frames, bed, bath, toilet and pretty much everything else modifications has been the last thing on my mind.

I have been in denial.

Totally.

Yes I know we have a walking frame and have applied for a wheelchair, but I guess I kind of saw those items as 'sometimes' things - ie we use them when we need them - rather than 'all the time' things.

I am now realising that we need to work out a way for Ashlea to get around that doesn't involve me carrying her. At present she crawls all around the house, but as soon as we need to go somewhere I pick her up. For example I pick her up and carry her to the car and put her in the carseat. I then lift her out of the carseat into her specialised pram. If we are using the walking frame I carry it down the back stairs, then carry her down the stairs, put her in it and when she has had enough I carry her and the walker back inside. I lift her in and out of the bath. Even if she is going to move from crawling on the floor to sitting in a chair I lift her into the chair. I lift her into her cot at night. Every single thing she does involves me lifting her in some way.

I believe the Occupational Therapists call these 'manual handling' issues. Somehow I have managed to remain completely in denial about how much manual handling and the physical logistics of disability are going to effect our lives. Now that I think about it, it is quite overwhelming.

Rather than freaking out and trying to work out a solution for each and every situation RIGHT NOW - which is what I'd like to do - I'm going to try to take it one step at a time. When a task becomes too difficult to continue doing, then I will find a solution to that one task. And then when the next one becomes unmanageable I will move on to that one.

Having said that there are two issues that do spring to mind immediately: bathing and transferring.

Lifting in and out of the bath is becoming dangerous - I have nearly slipped a couple of times while holding the slippery wetness of 14 squirming kilograms. Connected to that is the issue of Ashlea standing up and weight bearing while transferring from one chair to another - eg from a wheelchair to a shower chair (otherwise I'd still be lifting her into the shower chair!). She is unable to do this at present, and up until now I haven't really thought about how important a skill this is.

So, please leave all your logistics information for me. How do you manage? What modifications have you done to your house? How do you bathe your child? Can they do a standing transfer? What 'daily living' equipment do you have in your house?

Friday, October 16, 2009

Bon Voyage Aunty Carolin!

Yesterday the girls and I took my sister to the airport. She is going to the US and Canada for a month. Did anyone say jealousy???

I don't think Audrey understands the concept of holidays because as soon as Carolin had disappeared through the departure doors, she burst into tears. And kept it up half way home with the refrain "I want Aunty Carolin to come home with us". After many explanations she seemed to understand that Carolin was on holidays and we would go and pick her up from the airport when she got back.

You can guess what Audrey's first words on getting out of bed this morning can't you?

"Are we going to get Aunty Carolin from her aeroplane?"

Just quietly I am terrified of flying and have watched far too many episodes of Air Crash Investigation so am a little nervous with all the flying Carolin is doing. I keep checking the news to make sure there have been no reports of plane crashes... only a few more hours and she will have landed safely and I can breath a sigh of relief!

Wednesday, October 14, 2009

5 Minutes for Special Needs - Special Exposure Wednesday

No words needed...look how gorgeous she is!



Edited to add: Don't forget to check out all the other great pics here.

Sunday, October 11, 2009

Karaoke - Ashlea style

I think I have blogged in the past about Ashlea's love of Abba. Yesterday my sister bought Abba for Singstar - here are the results.





As you can see Ashlea got a little messy towards the end of the night - not out of the ordinary for karaoke at all. For those wondering what she is saying at the end she starts reciting names of characters from In the Night Garden. And sorry for any camera wobble - I was laughing too much while trying to film.

Friday, October 9, 2009

The verdict is in...

Actually there are two verdicts that have come in today...
  1. Ashlea is officially a GMFCS Level 3

  2. I may in fact be losing my mind
Ashlea had her 'official' assessment today for the GMFCS and she did indeed turn out to be a level 3 - on the lower side of the level, but definitely a 3. I am sure her paediatrician and neonatologist who assessed her as a one year old (at that time she was most definitely a level 5) will be very pleasantly surprised by this news.

Here is where Ashlea lies on the graph - the 'average' level 3 at age 3 1/2 would score 46 - Ashlea scored 43.79 (by comparison a level 4 of her age would score 36 - 37).


We are pretty impressed with this outcome, and hopefully if the scale is as predictive as it claims to be then this bodes well for her future. It is also good to have this baseline so we know that if she starts slipping below it some sort of intervention is necessary.

And now onto the crazy front...today after the assessment we went to the shops to get some lunch and then decided to stay and have a little browse. About 10 minutes into our browsing I must have put my bag on the floor (or the back of the pram and it slid off) to try on a jacket I had no intention of buying. I then of course walked out of the shop without it. I have walked off without it a couple of times recently but have always realised within 5 minutes. This time how long do you think until I even realised it was missing??? At least 45 minutes. Possibly longer.

Lucky for me another honest customer pointed it out to the girl in the shop who turned it in to Centre Management so it was easily recovered - a big relief as I was having visions of walking home in the rain with the girls and then sitting on the front step until someone arrived home to let us in as my car & house keys were in the bag...and my wallet, phone, ipod, address - you name it - everything you'd need to clean me out!

Please tell me I am not the only one going crazy!

Wednesday, October 7, 2009

5 Minutes for Special Needs - Special Exposure Wednesday

We Colin!

Yesterday the kids and I went to the Colin Buchanan concert and had a great time. Colin has a great range of Christian music for kids and always puts on a great concert (and cheap - only $7 or $8 for tickets). He always stays around and meets all the kids and signs autographs.

Here are the girls with Colin...



Please excuse the quality of the pic - one of the helpers at the concert took it.

Anyway after we met him I asked if he would do us a little favour and sing Ashlea's favourite song with her - a song based on the bible verse Isaiah 53:6. Ashlea can't sing the words, but she can sing the chorus which goes 'baa baa do baa baa'. He sang the words and Ashlea obliged with the 'baa baas'. She didn't get through the whole song but Colin was very sweet with her. I think he could see what an achievement it was for her - it is always lovely when someone takes the time to really 'see' your child.

Now if I ask Ashlea if she met Colin yesterday she says proudly 'I sing the baas baas'.

Don't forget to check out all the other great photos in Special Exposure Wednesday.

Monday, October 5, 2009

Photography 101

A few weeks ago I got a new camera. Boy do I need some photography lessons! I am actually wondering if I could use some of my lovely respite money to do an evening college course in photography???

So far I have been using the whizz bang camera as a 'point and shoot' camera as it has too many bells and whistles for me to decipher. Today I decided to try and be a little more adventurous - only a little though. Instead of using fully automatic settings I tried a couple of the camera's built-in modes - which technically is still using fully automatic settings but at least it forced me to think about what type of picture I was taking at the time. I think there are 5 settings - so far I have tried out 1 or 2. It will be a l-o-n-g time before I can even think about using fully manual settings again!

As usual the subjects for my photography practise are the children. I tried the 'portrait' mode today, although I think for Audrey the 'sport' option may have been better as she kept whizzing past me on her bike. It has also been a long time since I have used the actual eye piece of a camera (got into the habit of using the LCD screen) and unfortunately my vision has deteriorated since then so I keep accidentally cutting off people's body parts (photographically speaking of course).

Anyway, here are my favourites from today...these are straight from the camera - no photoshopping (that is another thing I need to learn...how to remove wrinkles from photos of myself - and that vein that always pops out when I yell at the children).

I have two that I like of Emma - she wasn't moving as fast so it was easier to get some photos of her.




Only one of Audrey due to her speed on the bike and her absolute refusal to look at the camera - she pretends to be shy and deliberately hides or looks away.


And this one of Ashlea - any hints for not getting sun or flash reflecting off glasses? The pig-tails were a little crazy today - almost like monkey ears. But how cute is she???


All photography tips and ideas gratefully accepted - bear in mind though that I have reduced the image sizes from 3Mb to 350Kb so as not to make the blog page too slow to load - hence a lot of the quality has been reduced. That's my excuse and I'm sticking to it!

Saturday, October 3, 2009

You've got mail...

Yesterday I got a letter in the mail regarding Ashlea's botox procedure. It contained these magical words...
"Ashlea has spastic diplegic cerebral palsy (GMFCS 3)"
Did you see that??? GMFCS LEVEL 3!!!

At one point I (and most others) would have never thought this possible. When Ashlea was first classified as a 1 year old she was a Level 5.

For those who know nothing about the GMFCS levels here are the criteria for being a Level 3 in the 2 - 4 age group:

  • Children maintain floor sitting often by "W-sitting" (sitting between flexed and internally rotated hips and knees) and may require adult assistance to assume sitting.
  • Children creep on their stomach or crawl on hands and knees (often without reciprocal leg movements) as their primary methods of selfmobility.
  • Children may pull to stand on a stable surface and cruise short distances.
  • Children may walk short distances indoors using an assistive mobility device and adult assistance for steering and turning.
Ashlea can w-sit, crawl on hands and knees and walk (very) short distances using an assistive mobility device. She is unable to pull to stand or cruise.

Unfortunately when Ashlea turns 4, the criteria for the next age group get tougher and I think she will drop back down to being a Level 4. After my initial reluctance to get her classified we are going to do the assessment this Friday. If Ashlea is well in the middle of the range for a Level 3 then that may show she will keep improving and be able to maintain that level. If however she is on the lower end of the spectrum for a Level 3 that may show that in time she will actually be closer to a Level 4. Does that make sense? These things are a little fluid until the age of 6. By the age of 6 a child's GMFCS level is usually unlikely to change.

Here are the criteria for next age bracket (4 - 6 years):

Level 3

  • Children sit on a regular chair but may require pelvic or trunk support to maximize hand function.
  • Children move in and out of chair sitting using a stable surface to push on or pull up with their arms.
  • Children walk with an assistive mobility device on level surfaces and climb stairs with assistance from an adult.
  • Children frequently are transported when travelling for long distances or outdoors on uneven terrain.

Level 4

  • Children sit on a chair but need adaptive seating for trunk control and to maximize hand function.
  • Children move in and out of chair sitting with assistance from an adult or a stable surface to push or pull up on with their arms.
  • Children may at best walk short distances with a walker and adult supervision but have difficulty turning and maintaining balance on uneven surfaces.
  • Children are transported in the community.
  • Children may achieve self-mobility using a power wheelchair.

Based on these criteria Ashlea would definitely be a Level 4 after she turns 4...but I don't believe she has finished making progress just yet! I am very hopeful that she might end up able to maintain her Level 3 status.

And for those wondering why I changed my mind about doing the assessment?

A couple of reasons:
  • one being that my curiousity got the better of me!
  • another is that it makes it easy to explain to medical people her level of function
  • and lastly the level you are has a strong correlation to the likelihood of developing hip problems in the future. If it is likely Ashlea will be a Level 4 we may pursue purchasing a standing frame as the more standing she does the less her chance of hip problems

And for those not interested in GMFCS levels at all who are still reading...here is a pic of my 'big girls' smothering my 'little girl' with love...