Friday, May 29, 2009

3 Year Assessments

Today we took a trip down memory lane and went back to the place where it all started...RPA's NICU. We went for the girls 3 year assessments. I can remember when we were in the nursery I would see other parents coming in for their follow up appointments and wish we could just fast-forward to that point in time.

Well, it has definitely felt like fast forward over the last 3 years, and now I can't believe it is time for my tiny babies to have their big 3 year old assessments. I don't have the final reports yet, but here are the basics on how they went...

Big A did extremely well on her developmental assessment. She scored well within the normal range in all areas - gross motor, fine motor, reasoning, speech etc. They were really happy with her progress (as are we) and it looks like there is nothing that needs following up (no surprises there).

Little A actually gave the assessors a pleasant surprise with her level of ability. I guess after the last 2 assessments they had pretty low expectations, but they were very happy to see her crawling and hear her starting to talk. They are going to assess her score against other children with a vision impairment, so it will be interesting to see where she falls on that scale. Even though she has had lots of assessments done, she has never really had her level of developmental delay assessed, so it will be interesting to see how she fares. I will post the girls 'official' results when I get them.

While we were there we took the opportunity to drop in and visit some of the nurses who helped take care of the girls. There were a few people we recognised - and they all definitely remembered us! We even bumped into the girls neonatologist which was lovely. He always reminds me of how much he was freaking out (his actual words were 'I still have nightmares about') that day when Big A lost all circulation to one of her legs. At the time I was worried but too overwhelmed by the whole situation to realise how bad it was. Now it makes me feel sick to think that Big A, my walking, talking miracle, could have lost one or both of her legs, rather than just the tip of her toe.

Surprisingly it doesn't give me cold chills to visit the NICU (mind you we didn't actually get up close to any babies or hear any of those horrible alarms sounding...that would have definitely done it). Even though it was at times incredibly traumatic to be there, I always felt like it was a safe place, THE safest place for the girls to be, so I quite like going back to visit. Our next visit isn't until 2011 when the girls will have their 5 year old assessments.

Tuesday, May 26, 2009

Hmmm...note to self....

Letting E buy a stamp pad with her birthday money may not have been such a good idea...


I keep finding Big A's red fingerprints all through the house...time to go run the bath!

Friday, May 22, 2009

The Pink Panther

Today we saw another wheelchair - called the 'Panther'. And yes, it was pink. The panther is a 'tilt-in-space' style wheelchair. After seeing it we decided that little A probably doesn't need a tilting wheelchair, especially because we can use the reclining seat of the panther on the base of a different wheelchair and have a cheaper, lighter chair that reclines if she needs to have a snooze while we're out.

While we were looking at wheelchairs, we had a twin milestone today....it was one of the first times (probably THE first time) I have seen my twins actually playing together. There was a box of lego out and they were both rummaging in it together. Both doing the same thing and laughing together. Priceless. I'm hoping for many more similar moments!

We are going to be reviewing all the wheelchairs we have looked at next week and will be (hopefully) making a decision.

Wednesday, May 20, 2009

Thanks Jaxson!

Little A got a package in the mail today - a special blankie from Jaxson, all the way from America. Jaxson's mum Lacey and her friend Julie have a great project going where they make blankies for sick kids - and they made one for us. Pop over to Jaxsons Blankies for Babies to see some other special kids who have recevied their blankies.

Here is a pic of A with hers...


And as you can see by this photo, Miss A is almost sitting unaided. Admittedly it is non-physio authorised w-sitting - but hey who cares! She sat for a good 5 minutes unaided yesterday...do you think that is good enough for me to officially declare 'she can sit'???

Friday, May 15, 2009

Who's Afraid of the Big Bad Statistic?

I have never loved statistics, and yesterday I heard a statistic I REALLY didn't like. Let me explain.

Yesterday there was a seminar at the Spastic Centre by the Rehabilitation Team at our kids hospital (I have written previously about Little A's appointment there). The head of the team spoke about CP and about the GMFCS (Gross Motor Function Classification Scale), which I have also written about previously. As you may remember I have been hesitant to get A classified as I don't really want her "put in a box" as such. Also, the classification has quite a strong predictive component, so you can guesstimate your child's level of function in the future based on their score. This is the part I baulk at because if the future looks 'bad' then I don't think I won't to know about that just yet.

Anyway, after listening to the talk and seeing descriptions of the different levels it is obvious Little A would be at best a level 4, or possibly even a 5 (1 being the 'best' and 5 being the 'worst'). And now for the statistic I didn't like:

"70% of Level 4's and 90% of Level 5's develop hip problems requiring surgery"

I thought I was unshockable by now and had the whole CP thing sussed out, but I was completely unaware of the high risk of hip problems requiring surgery. Just when you think things are travelling along smoothly something new to worry about always pops up.

More alarming statistics came my way from this study (I really should stay away from Dr Google). The study is trying to predict which children with CP will be able to walk based on their level of ability at age 2 (eg ability to roll, sit and pull to stand). Basically from these graphs it looks like A's chances of walking are slim. More disturbing though is the fact that around 10% of the children in her graph (rolls at age 2 but doesn't sit or pull up to stand) had died by age 14. Now THAT is frightening.

All these statistics do is encourage the fear (that is always with me) to grow bigger. I don't know if it is something all SN mums carry with them, or if it is specific to having nearly lost your child, but for me the fear is always there. Sometimes you can almost ignore it but at other times it is all consuming. Which leads to the question "Does the fear ever go away?"

OK, I'm going to turn the comuter OFF now and stop reading statistics!

Sunday, May 10, 2009

Happy Mothers Day

I hope all you mums out there had a great day today. I've had a lovely day with all the family - my favourite bit was getting the presents the girls made at preschool. The girls hid them after bringing them home and then gave me strict instructions "not to look under the bed until Mothers Day".

Friday, May 8, 2009

I've found "The One"

Yes, after much searching I have found THE ONE. I went into today's appointment at the Spastic Centre hoping finally to find THE ONE, and today I found it. The right ONE for Little A. The right Walker that is. We have decided to go with the KidWalk from Durable Medical Equipment.

It is definitely the best walker for A (of the ones we have tried).

She was happy in it!
She will be able to stand at a table and participate in activities while in it!
It doesn't rub on her button!
She can take steps in it!

Here she is:






































And the best part is that because we have been given the money for it from our church we can order it straight away and will hopefully have it in a couple of weeks - YIPPEE!

I also found another great thing yesterday at hydro. For awhile I have been thinking I would like to get together with some other Christian mums who have children with disabilities. I was starting to think I would have to start my own support group...until I met a new mum at swimming yesterday who is part of a small support group that meets in the next suburb to me! It will be great to meet up with other mums who 'get it'. Don't get me wrong - I have a lot of supportive friends who have children with disabilities, but they mostly live inside my computer and I don't get to meet up in person very often! It will be nice to get together In Real Life with other mums.

AND our other good news for the week is that one of our services that was meant to decrease to fortnightly therapy (now that Little A is 3) have decided to allow us to continue having weekly therapy for the rest of the year. VERY happy about that as A is making so much progress at the moment.

All 3 of these things are an answer to prayer and we are very thankful.

Tuesday, May 5, 2009

New family pics...

As you can probably tell by my new header, we got some family photos taken last week. We are really happy with how they turned out. So here are some snaps of the whole family....I'll even put in some of me (shock horror).

First up is Big A, Aunty C, Little A, Me, M and E













This one is E and I













Big A



















Little A



















E













All 3 girls...













M and I














Thanks so much to Tim and May from Images by timnmay we are really happy with our photos. No prizes for guessing what all the grandparents are getting for mothers day!

Saturday, May 2, 2009

Fun with Aunty C

Today M and I went to a wedding sans children. The girls stayed home and had messy fun with Aunty C. They had a great time, although I think Aunty C was a bit shattered by the time we got home!

Here are the girls having messy fun...


Here is Little A's rendition of Twinkle Twinkle...as you can see it is a work in progress!