Monday, March 30, 2009

IFSP Review

Today A1 had her 6 monthly IFSP review at the Spastic Centre. This is where we look back over the goals we set 6 months ago and set new ones for the next 6 months. Today's review was slightly different to previous ones in two ways.

Firstly, we were able to actually tick off some goals as ACHIEVED! Previous meetings most of the goals have just rolled over onto the new plan, but this time we were able to say "YES she can crawl" and "YES she has started using words". Obviously speech continues to be an ongoing goal but it was great to be able to see that she had reached the targets we set 6 months ago.

Secondly, we aren't planning for the next 6 months of therapy, we are kind of planning for the next 6 months of non-therapy. When the twins turn 3 next month, A1 is no longer eligible for continuous services from the Spastic Centre, but has to go onto the waiting list in order to receive services. The wait list can be as long as a year. Previously I felt quite frustrated about the idea of all of a sudden stopping therapy, but to be honest at the moment I am so exhausted that I am actually looking forward to having a break. I need a rest. Next year the twins will be at preschool (which will be very therapeutic - for me as well as them), so it is really just the remainder of the year that we won't have as much therapy. We still have hydrotherapy and vision stuff through RIDBC, and we'll probably throw in some private speech therapy so I guess it isn't that much of a break after all! I'll be happy even if we are just slightly less busy.

So, what goals did we set for the next 6 months???
* we are still working on sitting
* improving speech
* preschool transition
* applying for equipment (walker, wheelchair and bed modifications)
* learning cause and effect (through using switch adapted devices)
* learning to pull up to stand

That's all I can remember for now. Hopefully I can report in 6 months that some of these goals have also been achieved - even if only the equipment ones. You never know with Miss A though - she may surprise us all - it wouldn't be the first time.

Sunday, March 29, 2009

Overwhelmed...

Usually when I feel overwhelmed about 'disability stuff' it is bad overwhelmed, not good overwhelmed. Today I am overwhelmed in a good way - by people's kindness and generosity.

At church this morning this leaflet was in amongst all the other bits of paper they give out...obviously they used our real names but the Paranoid Android that I am married to worries about identity theft so for now we will remain anonymous on this blog (ridiculous really since you all know our names anyway!).

From the Pastoral Care Group - March 2009

Dear Friends

In addition to our regular planned giving to the general finances of the church, from time to time we also ask you to consider the specific needs of members of our congregation who are experiencing financial difficulties. One such family at the moment is the A family. Some of you will know them but for those who don't allow us to introduce them to you. Alison and M have been part of Christ Church for many years. They have three daughters, E who is five and twins A1 and A2 who will be three in April. A1 was born with multiple disabilities. She has cerebral palsy, she is blind, she needs to be tube fed and will eventually need a kidney transplant. A1, as you can imagine has many special needs and these needs create financial difficulties for M and Alison. One of A1's most urgent needs at the moment is a specialized walking frame, the cost of which is between $3500 and $4000.


The Pastoral Care Group would like to encourage our church family to support A1. We would ask you to pray about this need for A1 and if the Lord lays it on your heart, to contribute in some way to the purchase of this equipment.

After this there were details of how people could donate.

How amazing!!! Our church is going to help buy A1 her walker so that we don't have to wait for 12 months (or however long) for the funding to come through! THANK YOU GOD!!! I knew the church wanted to help in some way, but I was not expecting this. I can't wait to see the physio tomorrow to discuss trying some other walkers so we can decide which one to get.

I spoke to a few people after church and they all sounded really positive about supporting us. I think a few hadn't realized the extent of A1's disabilities - when they see her she is often in the pram and looks like a younger child so it isn't so in your face. But when they are listed like that it can be pretty confronting - I know because I still find it confronting sometimes to see a list of her disabilities like that (and that wasn't even the complete list!).

Today, however, I am not overwhelmed by what is on her list, but by the kindness and generosity of God's people in wanting to help us like this. Lets get us a walker!!!

And just in case you have forgotten how cute she is, here is a picture ofA1 'rumbling' with E.

Saturday, March 28, 2009

Friday, March 27, 2009

Party preparation day

Tomorrow is E's 5th birthday party, so I have been madly trying to get things organised in time.

The cake is made. The pass-the-parcel is wrapped, and the lolly bags ready. We've got the essentials covered.

I'll post party pics tomorrow or Sunday - but here is one of the cake to start with.

Tuesday, March 24, 2009

What's your score?

Your GMFCS Score that is. This score is a classification of the severity of CP. When A1 was first diagnosed (at her 12 month corrected assessment) she was classified as a Level 5 - the most severe.

The issue has come up again as her new physio wants to do the assessment again now that she is older. I have said No. Not yet anyway.

My concern is this: if her therapists assess her and she scores poorly (fairly likely), are they going to be able to put that out of their minds when choosing treatments for her? If they are expecting her (based on the score) to always be in a wheelchair, then is that what they will be aiming for (even if only unconciously)? I am not prepared to go there yet. I am still aiming for walking, talking and eating sandwiches (these are my personal measures of disability severity). I know that my hopes for her may be a little unrealistic, but it is my job as her mother to hope that she proves all doctors expectations wrong. And she already has proved them wrong in a lot of areas.

I know it can be helpful to know the score because it can be a good predictor of future abilities...but if the future looks bad (according to the score) do I really want to know that yet? My problem with getting a score is that children are not usually expected to move between levels. That is, once you are categorised at a level, you tend to stay at that level. Now A1 was initially given a level 5 score, but I think she is above that now. I would be happy to have a score if the therapists allowed for the possibility that she could move up a level, but the accepted wisdom is that generally that doesn't happen. But A1 is pretty special - she has already surpassed many people's expectations. And I am hopeful with her rate of progress to at least get to level 3...or beyond.

Usually I am not a big fan of ignorance, but at this stage I'd like to remain a bit ignorant and hold onto my hopes of walking, talking and eating. But then the 'realist' in me thinks - maybe we should find out? Maybe it is better to know? What a choice - hope or reality. I think I'll go with hope. For now anyway.

Even if we don't get walking, talking and eating in this world, we know that in the life to come A1's body will be perfect and there will be much walking, talking, leaping, jumping and eating. And praising God. Talk about a reason for hope.

Monday, March 23, 2009

Mum, where do you get babies from???

Yes, the conversation every parent wants to have with their almost 5 year old.

We were driving home from physiotherapy when we passed a reception venue. This started a discussion about weddings, which lead to...

"When you get married do you HAVE to have babies?"
No darling, only if you want to.

And then...
"But Mum, where you you get babies from anyway?"

Can I say I was totally unprepared for this question! I thought we had YEARS before this topic would come up. I was deliberately vague in my answer as I really don't think 4 year olds want or need to know all the details. So I said that the Mummy & Daddy decide they want to have a baby and then the daddy puts something in the mummy's tummy and the baby grows there. I have no idea if that was the right thing to say! Anyone been there, done that and got any tips???

My vague answer seemed to satisfy her enough, because then the conversation moved on to...

"I don't want to have babies"
Why not E?

"I don't want to have to look after them!"

Fair enough!

Sunday, March 22, 2009

Toe-cam

Anyone want to see a pic of my toe??? Thought not...but here it is anyway. I think I broke it today. A2, who as you will remember is newly toilet trained, was heading for the potty - actually reversing up to it is a better description, moaning "I need to do a poo". I was sitting on the floor feeding A1 when I realised A2 still had her undies on. PANIC! In my haste to get them off I leapt up off the floor, whacking my hip on the kitchen bench in the process, this then threw me off balance causing me to stumble and kick my toe....but I got there in time! And you know what - it was worth it - I'd rather have a broken toe than a potty disaster ANY DAY!

Aahhh - I love blogging. Without it none of you would have been blessed by knowing these exciting details from my life!

Friday, March 20, 2009

Paed Review

Today the twins had their 6 monthly check up with the paediatrician. We always do A2's review first as she is in such good shape it is ridiculous that she even has a paediatrician. But she was an ex-27 weeker too so she gets the once over every 6 months - and always gets an excellent report. She is 92.2cm and 13.5kg which puts her on the 50th centile for height and weight. Sometimes it amazes me to think she was so premature - you really can't pick it now (except for the head shape maybe!).

A1 got a really good report from the doctor too. It was so refreshing to be with a doctor who, instead of just talking about all the issues, was so happy to see A1's progress. She has been seeing the girls for 2.5 years now and was just so happy to see how A1 has progressed since our last visit 6 months ago. It is not often that you go away from an appointment feeling good not stressed - but this was a good one. Oh and she is also going to get onto the free nappies for us.

A1's stats are 11.7kg and 83cm (sort of - very hard to measure her accurately). Getting further below the chart for height but still growing so no need for growth hormone just yet. Her button (PEG) is definitely getting too small so we are going to look into getting a larger size. I am not sure whether to stay with the entristar or change to a mic-key. The entristar is great because it sits really flat on the skin and is nearly impossible to remove. The mick-key sticks out a bit more and is much easier to remove (ie the child can potentially pull it out) but that also means you can change it at home if need be rather than needing a general anaesthetic. If anyone has any thoughts / preferences please leave me some feedback.

And to finish for the day here are a couple of cute pics of A1 from this afternoon. I am thinking this walker may not be the one for us if it is this comfortable and non-challenging....

Maybe this is why instead of being in bed Miss A is up crawling around and chatting??? Hmmm sleep battle score: Child 15 v Parents 0

My First Rant...

You knew it was coming sooner or later - its not possible for me to have a blog and not use it to rant about the idiots we encounter in everyday life. Maybe 'idiot' is too harsh a word - lets try something a bit more pc - how about 'neuronally challenged'?

Yesterdays 'neuronally challenged' individual works in Big W - does this surprise you? I took the twins to the shops to get supplies for E's upcoming birthday extravaganza, and while we were shopping A1 threw her glasses out of the pram. Now this is not unusual, but fortunately we haven't lost a pair yet (I'm sure it is only a matter of time though). I didn't realise we had lost them until I had packed everything in the car and was putting the girls in the car (its always the way isn't it?) so I had to put the twins back in the pram and retrace our steps. We got back to Big W and I asked if anyone had seen some baby glasses - this is where the aforementioned individual comes into the story. Her reply???

"Yes I found some on the floor so I threw them in the bin".

What the??? Do these look like something that should be thrown in the bin? Surely they have a policy of holding onto lost property to see if someone claims it?

Luckily they weren't damaged from their time in the bin and we have them back now. And thanks to this little opportunity to rant I feel much better!

You know there will be plenty more posts like this in the future don't you??? I just can't help myself and it is so therapeutic!

Monday, March 16, 2009

PDC Appointment

Today A1 had her first appointment at the Physical Disability Clinic. We were meant to be seen ages ago but our referral got lost somewhere in the ether. Anyway, we finally got there today. We were there for about an hour and a half (fun with 3 kids - who knew sibling care closes early on Mondays???)

The summary of the appointment is this:
* yes they agree with the initial diagnosis of spastic diplegia but they won't comment on the severity (we were originally told moderate severity)
* they think botox would be a good option for her so we are on the wait list for that (8 months apparently but we are hoping for a cancellation so we can get in sooner).
* we need new AFOs - so we are getting the casting done for them in early May
* A1 needs a hip x-ray which we ended up doing this afternoon - although her hips felt alright when the doctors checked them so hopefully nothing nasty will show up there

We need to go back in 6 months. In the meantime the search for a walker and a wheelchair continues. We saw this wheelchair last week - however it doesn't come in a size small enough for her so it is not an option - which is disappointing as it had everything we were looking for (and I really like the wheels). But we did see this walker (the picture is only of the basic frame - we would be getting it with all the bells and whistles that fit inside it to hold her up). We want to try it out ASAP - it is much lighter than the current one we are trialling - which I don't think I could get in and out of the car without giving myself a hernia!

Watch this space ... we also have a paed appointment this week and I will be asking about free nappies and if A1 is getting too fat for her peg!

Sunday, March 15, 2009

Women's Conference

Yesterday I had the chance to attend the SMBC Women's Conference. It is a yearly conference with 2 bible talks in the morning and then a seminar in the afternoon. This year the talks were on the resurrection - which even though I am a Christian I never used to think about all that much. But I can tell you that since having A1 I think about it all the time and long for that day in heaven where 'He will wipe every tear from our eyes. There will be no more death or mourning or crying or pain" (Rev 21:4). It was great to hear some talks about the certain hope we have of this as Christians. The seminar I went to in the afternoon was on the topic of medical ethics and euthenasia. The speaker was fantastic and raised some very interesting points. The main point of her argument is that she doesn't believe doctors should have the right to decide whose life is and isn't worth living.

As the parent of a disabled child I totally agree with her. It would be very easy for a doctor to look at A1 on paper (blind, kidney failure, cerebral palsy, developmental delay) and conclude that she has a poor quality of life. We have already had the "we need to discuss what is best for A1" talk with A1's renal doctor. Whenever we see this doctor A1 is never at her best, so her doctor did raise with us the option of not treating her when she gets to ESRF. Now I am not judging this doctor at all - she is a great doctor and it is a discussion that does have to take place. We have obviously told the doctor that we think A1 has a good quality of life and that we would like her to receive one of our kidneys. But it does bring up the question - if M or I aren't able to donate would A1 get a kidney if she were on the waiting list? Or would someone who doesn't even know her decide based on her list of diagnoses that she shouldn't get one?

I think I have digressed from my original point....but I guess when I think of medical ethics the topic is very close to home. If the doctors had of known A1 would be this disabled they would have recommended switching off her ventilator in the nursery I am sure. And you know what we may have even listened to them. But the biggest lesson of this whole experience has been about quality of life. What makes a life worth living? "Before A1" I would have thought a child with her disabilities wouldn't have much quality of life at all, but I can tell you that we live with her and we know she has a good quality of life. She is happy. She is loved. She loves. Yes it is a different life to the lives of her sisters, but I dare anyone to suggest she has a poor quality of life.

OK, I'm getting off my soapbox now. Thanks for letting me 'think out loud'.

Thursday, March 12, 2009

I need some advice...

So I need some advice - from other parents, but particularly other parents who have children with special needs. I need advice about how to manage this crazy life with all the appointments and busy-ness and how to look after yourself as well.

My dilemma is this. I am tired. All the time. We have appointments nearly every day of the week: therapy for A1's vision, physiotherapy, occupational therapy, speech therapy, hydrotherapy, doctors appointments for kidneys, eyes, brain, hormones etc. Plus there are always little extras like looking at wheelchairs and IFSP meetings. There is always something. So I am genuinely asking other mums out there - how do you juggle all of this and still have time to take care of yourself as well? If I am going to care for A1 long term then that means I need to take care of myself too. I need a long term plan. Do you have a plan? What is your plan?

Monday, March 9, 2009

Dental Daze...

Well, fun day for me today - a visit to the dentist. For me this involves having to be sedated (seriously...major phobia) so it does end up being a little bit fun. I get to have a nice little byesie while the dentist does his thing (root canal and a crown in this case) and then I get to go home feeling ever so slightly stoned. Of course M had to take the day off work to look after me - so I made him look after the kids and then I went to bed and indulged in the biggest luxury of all for a busy mum - a long afternoon snooze. Bliss!

Although when I awoke from my drug haze (at 5pm) I discovered something a little shocking - 2 horrid metal teeth in my mouth! After a small panic attack I checked my receipt from the dentist and it appears they are only temporary crowns....phew!

And now if you would like to move your attention to the other end of the digestive tract... we have some big news! A2 had her first full day of using the potty with no accidents! We have been toilet training in preparation for preschool next month, but have been a bit half-hearted about it. But today she wore undies all day (well actually she started in undies but abandoned them by lunchtime) and did everything in the potty! She is very proud of herself and keeps saying "I ready for preschool". She is still getting the hang of the whole timing thing and will often come tearing in from outside yelling "WHERE'S THE POTTY???" and we have to clear out of the way as she bolts to the potty. But I think she has got the hang of it now, so from now on - no more nappies during the day.

It is very exciting to have one less child in nappies. My next nappy goal for the year is to try and get free nappies for A1 from the PADP. I have heard you can get them from the age of 3 so that is my next mission - I plan to be on their doorstep with the paperwork the day after the girls' birthday!

Sunday, March 8, 2009

Which Walker?

Along with the question of which wheelchair to get Miss A1, comes the question of which walking frame to get. We have had one over the weekend...I don't know what it is called but here is a picture of her in it...It is pretty chunky and relatively heavy but she doesn't hate it as much as the others we have tried so that has to be a good start!

She can't really get it moving on the carpet, but if we take her out onto the concrete she can move backwards in it. Is it the best one for her? Who knows. It is the best of the ones we have tried so far...I just don't know whether to go with this one seeing as she can't actually walk in it yet. But maybe that will come with time? The good thing with this one is that all of the inside "bits" can be removed if (I like to think when) her walking improves and then it can be used like a kaye walker. For those experienced using walkers please feel free to leave feedback - especially about how long it took your child to "get the hang of it".

So of course I have a little clip for you of her pottering around the yard in it. It was great - she was able to be outside with her sisters - participating with them. They were on their bikes and she was in her walker and they were all able to potter around together. It was fabulous. You'll have to excuse her crazy hair and the background noise - A2 was about to leap off the trampoline and was yelling for us to come and get her - I think the fairy wings she was wearing had given her the illusion of flight - she was standing on the edge "flapping" her arms and then yelled for help almost as an afterthought.
video

Here are a couple of other pics from this afternoon...














A2, A1 & E and the girls and I...

Thursday, March 5, 2009

On the hunt for a cool set of wheels

Before A1 starts preschool next year we need to get some equipment - namely a wheelchair and a walking frame. So yesterday I went to the IRSA Daily Living Expo to check out what is available. I guess like most other people there I would have never expected to be out shopping for a wheelchair - especially for one of my children - but there we were.

I went with all 3 of the kids. E & A2 had a ball trying out all the wheelchairs and collecting as many freebies as possible. I also overhead E asking some of the grown ups why they were in wheelchairs - I'm not sure what the etiquette is there....should I shush her? She was just being curious (like the time she demanded to know "Excuse me, I'm talking to you - why have you got that skin" from a rather bewildered little boy who happened to be from Sudan). We get asked questions about A1 all the time....I'd rather people were just open and asked questions instead of avoiding us (which lets face it does happen at times) so I let my kids ask questions. I hope no one was offended. I guess in time they will get sick of people asking about A1 and will learn to stop asking too.

Anyway, we looked at quite a few chairs and can I say that even after seeing all those chairs I still have NO IDEA about what is the best option for her. All I have worked out so far is that we need a fully customised one...but which one? If anyone has any tips on choosing a wheelchair please leave me a comment!

After I got used to the idea that A1 would need a wheelchair (actually truth be told I'm still not really used to the idea), I pictured her in a 'regular' looking wheelchair. Not one of those "really disabled looking ones". Surely not my baby in one of those? Not that there is anything wrong with the "really disabled looking ones" - I don' t want to offend anyone - it is just very confronting as a parent to realise that your child needs a wheelchair. And it is going to be confronting going out in public in it to begin with. Its weird - because I am not AT ALL embarrassed or ashamed of her...I think it is the "oh you poor things" looks that I hate. I'm sure all you people in the disability world know the ones I mean...I am not a "poor thing" - I am blessed beyond belief by ALL of my children.

Anyway, I fear that I am rambling so I will end this post. Feel free to leave advice about choosing equipment. We are trialling a walker over the weekend - I will post pics of A1 in it. I am also considering getting her this trike for her birthday - its not perfect but I thought it might be a fun way for her to play in the backyard with her sisters.

Monday, March 2, 2009

A Free Day!

Today we had a "free day" - no therapy appointments, no swimming lessons, no doctors appointments - NOTHING. No plans. What a luxury! So I asked the girls how they would like to spend this day of luxury...."at McDonalds" came the answer.

So off we went to Maccas for lunch - which unlike most lunches made at home was wolfed down. We then browsed at the shops (toy shops mainly) and then the girls decided they were hungry again. "I want a Krispy Kreme donut" says A2 ....well, who I am to argue with that? So off for donuts we went.

It was so lovely to have a relaxing day where we could move at our own pace. We didn't have to rush to get anywhere. We weren't running late for anything. I was much less stressed than usual. Is this what life is like for "normal" people??? Do people without multiple therapy appointments a week actually have free time like this??? On a regular basis??? I had better not think about that too much or I might get jealous.

All in all it was a great day (the "best day ever" according to E who is obviously easily pleased) - a little old lady even asked if I needed a hand - very sweet - I didn't have the heart to tell her that pushing the double pram with the twins in it and E on her skateboard on the back might actually kill her. It was a nice gesture though...and as for the other little old lady who gave me the evil eye for parking in the disabled parking space - get over it luv - we've got a permit!