Wouldn't change a thing

We don't have Thanksgiving in this country, but we have lots of friends from the US, and some do a big celebration in our street.  It has made me think about the past few years and what we've been through with the kids.  Yes, I have a little girl who is deaf, and who struggles to grow.  Yes, I have a boy whose lung problems mean that he might spend a good portion of next year in hospital.  Some days are tough, but these are my kids, and I love them dearly.

This morning Matilda was playing the harmonica while dancing.  it was a simple thing, but I am ever so grateful that I could experience it.  The other day my five year old took photos of the insides of his lungs and an oxygen mask for show and tell.  It didn't seem strange to him at all.  He's got so many of these pictures that he thought it would be cool to show the other kids.

Life may be easier if my kids didn't have their little quirks, but I wouldn't change it.

Below is our Christmas card for this year.

2 years post assessment

So, I got Matilda's assessment report in the mail today.  I had already been given the standard scores, but I like seeing the age equivalents as it gives me a better idea of how things are going.
Here are the results (chronological age is 2 years 7 months):
Auditory comprehension - 2 years 11 months
Expressive comprehension - 3 years 7 months
Total language score - 3 years 1 month

I am stoked.  Her auditory was lower, but I think that's because she was playing games with her therapist and refusing to point to the correct picture.  She has made 15 months progress expressively in 6 months.  We're off for her audiology assessment on Thursday.

Two years

I can't believe that it has been two years since Matilda's switch on.  It seems like so long ago, but I can't still remember it vividly.

This is the little video that I did at the time for some family overseas (apologies for the poor quality).



We're having Matilda's assessment next week, but I know that she has around 800 expressive words, can say 8 - 10 word sentences, counts to 20, sings her ABCs, and keeps telling me that she wants to learn to write.  She is an amazing kid!

MAPs are important

We've had issues for the past 6 months or so with Matilda's maps. The low frequencies drop off after a few weeks so she loses sounds. We've done 3 maps over the past month and I think we're getting somewhere.

Matilda's language seems to have exploded. She is saying full sentences (6 plus words) including joining words. This morning she said "on Tuesdays I go to Karen's house and Daddy goes to work and Mummy goes to work". Her 2 year post implant assessment is coming up in a few weeks so I will be interested to see how that goes.

This is a pic of Matilda on the giant rocking horse at the Children's hospital. Fortunately for her, she was just visiting. It was her big brother that needed the treatment this time.

I need free fuel

So, after an email conversation with Matilda's audiologist today, we've decided that she does need another MAP. It will mean that I'm doing 5 trips to the city in 3 weeks. With fuel at almost $1.50 per litre it will be a hefty bill.

On the good side, we reviewed Matilda's therapy plan today and she has achieved most of her therapy goals up to 30 months.

She has also learned to put her coil back on - yay.

And she's so darn cute

Photos

For some reason I couldn't get these on the last post, but here they are.

My munchkin playing the piano

Trying to fly a fighter jet (she had to be pulled out kicking and screaming)

An update

So, maybe I should just resign myself to the fact that I don't blog well. I've been thinking of doing a post, but it hasn't actually eventuated.

Anyway, here's what's been happening:

• Matilda is now 2 years, 5 months. She weighs in at 9kg (20 pounds) and 77cm. Still nowhere near the charts but I don't really care anymore.
• Matilda has more words than I can count, and is coming up with great sentences like "that's enough talking Mummy, get off the phone", and engaging in long conversations with her baby doll.
• She can sing all the words to a bunch of songs, including Twinkle Twinkle, Open shut them, Row Row, this hallelujah song, and Happy Birthday.
• we STILL can't seem to hold a MAP well. Matilda has always had issues with her low frequencies (m/oo) so we've been mapping every 3 months or more frequently. One month ago she suddenly started jumping whenever anyone spoke. It came completely out of the blue, and went away just as quickly, but recurred every few days. Thankfully a new MAP fixed this, but her low frequencies have gone haywire again, and she's also confusing 't' and 'k'. We'll probably get a new MAP this week, but I don't have the physical or emotional energy to get a MAP every couple of weeks.
• Matilda started daycare a few weeks back, and at the end of her first day, her carer queried her date of birth. She said that she thought that maybe it was written incorrectly because her language was so good for her age. It was the best things she could have told me. Matilda held her own with the other kids, told the carer everything she needed, and enjoyed the day, so it is all going well.
• She is the most delightful little girl, albeit ridiculously stubborn (I can't imagine where she gets that from). She melts the heart of everyone she meets and really makes it worth getting out of bed in the morning (which has been a challenge for me of late).

That's about it from us. If anyone has any grand ideas about how to fix a fluctuating MAP, I'd love to hear from you, although the audiologist says that it is just the (un) luck of the draw.

18 month post implant

OK, so I am a terrible blogger. I think that it is because I don't feel that I have anything interesting to say. I am also generally unmotivated at the moment. I'm doing a photo-a-day project, and that maxes out my energy most days.

Anyhow, today we had Matilda's 18 month post implant assessment. Her speech therapist uses the PLS4. Matilda got really sick of it, so she didn't get ceilings on any of the subtests (which means that she would likely score higher) but the test showed that she is at 2 years 5 months for receptive language and 2 years 4 months for expressive language (chronological age is 2 years 1 month). I'm pretty happy with that, but happy to shoot for the stars next time.

I will try and come back in the next few days a write a few things that we've been doing.

I think she'll be OK...

When Matilda was born, and we found out that she was deaf, I didn't want to think about her future. I was too scared about the things that she'd miss out on, and wondered what kind of life she (and we) would have. A conversation that I had with a friend the other day changed that though.

The friend and I were cleaning up at a mutual friend's business that was ruined in the floods that we had here (75% of our state was affected by floods - currently the death toll is about 20 but rises daily). I was telling her that Matilda has just started telling me to "go away" when she is doing something that she doesn't want help with (flushing the toilet is a big one). The friend told me that when her son (who has autism) started lying to her, she knew that he was going to be OK, because he was doing "normal", albeit naughty, kid things. Matilda is doing so many normal things - she fights with her brothers, she tells me to go away, she says "no" when she doesn't want to do something. With my two boys, these things would have upset me, but with Matilda it helps me to realise that she's going to be fine. Yes, she'll always have struggles and there will be a few things that she can't do (like join the army, which doesn't upset me at all), but for the most part, she'll be a regular kid with a bit of extra equipment.