Another year on

I realise that it has been a year since I've updated this blog, but tomorrow is the 4 year anniversary of Matilda's surgery. It seems like so long ago - these miraculous devices are an integral part of her (and us) and I can't imagine what life would be like without them.

These are just some of Miss M's amazing achievements over the past 12 months.
- getting an award for leadership at pre-prep
- singing in front of 450 people
- mastering the 'l' sound and getting close with her 'th'
- Having the first meeting with the school in preparation for prep next year
- growing a few more centimetres
- swimming some strokes independently

My girl is pretty darn amazing. Each week the school that all of the kids for to has a chapel service. She likes to attend and we sit a few rows from the front. Most weeks, she will make her way to the front and sing her little heart out and do the actions in perfect timing. Most weeks I cry, but there are a few others who know some of our story and shed a tear as well.

The amazing Miss M strikes again

A few weeks back Miss M's pre-prep teacher asked of I'd bring her to chapel (the whole-school assembly) to accept a student of the week award. One child is each class across the school (pre-prep to year 6) is presented with an award. Miss M was super excited to hear her name called out and confidently marched into the stage and accepted her award. She stood with all of the other children (many of whom were twice as tall as her) and the entire school oohed and ahhed at her. The deputy principal commented about how everyone thinks that she is so cute. I shed a few tears thinking about jar far we have come in three years. Shortly after she was born, it was difficult to imagine that we would make it to this day. I am so proud of how hard my little girl has worked, and how determined she is already to succeed. Her teachers have said that she is one of the most determined children they have seen, and that they are sure that she will be able to do whatever she chooses to in life.

New headbands

Little Miss M's ears are still not quite big enough to keep her processors on without assistance. I've been getting a little bored of her lace headbands, so I found some sequined ribbon in the fabric store a few weeks back and created these little numbers.

They work really well because the ear hook slides in between the sequins.

A reality check

Miss M has been doing amazingly well. She is loving kindy, and has lots of great friends. She is recalling incidental facts ("Mummy, the baby we saw today was 4 months old"), and growing up everyday ("so, yeh, alright Mum, see you this afternoon"). While I thought she was going so well, a brief conversation with some of the staff jolted me back into reality. You see, Miss M is small; not just little, but extremely small ... Smaller than every other child her age. While she copes really well, it is becoming obvious to me that others find it a challenge. The staff at school say that they are concerned about her safety around other children; that they can be rough and knock her over; that she can't walk with them as they are too tall/too rough/too fast. It seems crazy to me that after all the work we have put in to getting Miss M's language on par with her peers, that it is her size (something we have zero control over) that might be a greater influence on school life. It is frustrating me to no end, and I am not really sure what I can do about it. I know that my little girl is confident, self-assured, assertive, and strong, and I believe that she will succeed at whatever she wants to. I just need to convince everyone else of this ...

Feeling blessed

I've been a little down lately, for lots of reasons unrelated to Miss M's hearing loss.  Because of this, I've been trying to make a conscious decision to look for the positives around me.  These are a few things that I've seen and heard.

- Matilda started pre-prep at a mainstream school in February (when she turned three).  The school has minimal (i.e NO) experience with deaf kids).  She is loving it.  She comes home singing songs that she has only heard at school.  She is talking about her friends, and her favourite things, and can spend 5 minutes just telling me what happened that day.

- While driving home in the car the other day, Matilda was singing a Letterland song that she learned at school.  One of her brothers joined in.  At the end of the song Matilda said "good singing Emerson, now let's give it one more try".

- Matilda now has favourite tracks on a few CDs in the car.  She can tell me the track number, and can pick the song just by hearing the first few bars.  Who said that deaf kids can't distinguish between tunes!

So, despite all that has been going on here, I am feeling amazingly blessed that my three year old, profoundly deaf child, is thriving at a mainstream pre-prep, and is just soaking up her surroundings.  We are fortunate that she will be able to attend this school until she is in grade 12 (so another 14 1/2 years).  I'm sure by then she'll think that she owns the place :)

Its been a while

Still haven't quite got this regular blogging thing going, but we've had some good times, so I thought that I'd share them.

Matilda turns 3 next week.  She has decided that singing is her most favourite thing.  Anything can be turned into a microphone - a cup, or even a toilet roll.  I get a tear in my eye every time I hear or see her sing.  It is truly a miracle that my little girl, profoundly deaf, can sing, and even in tune (as much as a three year old can be).

Miss M is also starting pre-prep in two weeks (our version of kindy).  She will be on the same campus as her two big brothers.  When we went for a meeting last week, Matilda sat down at a table, and chatted to one of the teachers about the play dough shapes she was making, just like any other kids - AMAZING!

It has been a tough three years, but we've come so far.

This is a pic of her after yet another trip to the Children's Hospital for another test to see why she is so small.

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.

A video to melt your heart...

OK, so I am a slack blogger. I should work out how to do it from my phone, and then I would be far more frequent. Matilda came out with this line today, so I had to get her to repeat it so I could capture it on video. As a bit of background, it has been raining where we live for almost two months straight. I think we've had 2 or 3 days without rain in December, and I heard on the radio today that it is the wettest since 1850. That should explain how she came up with this phrase all by herself.

The first time she said it, she looked outside, held up her hand to signal stop, and yelled "stop raining". Hmm, wonder if she's got the hint that Daddy wants to get outside and do some yardwork!

Almost one year

Next week will mark one year since Matilda's cochlear implant activation. The last year seems to have flown by, although it has still been such a long road. I am so grateful for the technology that has allowed my little girl to hear, and for the professionals who have supported us throughout the past 18 months or so.

For those of you who have done this already, did you do anything special for the people who helped you? I am considering sending a card to Matilda's surgeon, audiologist, and therapist. I don't really know what else I could do. I'd love to send a DVD of her talking to the surgeon (because we don't see him often) but Matilda's new 'trick' when she sees a camera is to instantly freeze in a 'cute girl' pose, so I doubt I'd get any language on tape.

Matilda will have her one year assessments over the next few weeks. It is both scary and exciting. I know that she is doing really well - she has about 40 words, and her listening skills are great, but I also know that there are gaps and I'm a little concerned about how I'll cope if the results aren't what I'd like.

Fortunately, after the assessments we'll be travelling to Tasmania (an island at the bottom of Australia, for those of you overseas) for 4 weeks. I think I really need the time away from therapy just to spend some fun time with the kids.

As always, a cute pic of my princess to end.

Size does matter!

I'm back. Its been a while between posts but I really haven't been coping well with life so I haven't had anything constructive to say. I'm finding it hard to balance the needs of all 3 kids, as well as other things, but I know that its just a matter of getting through each day.

My bonus for today is that we got Matilda's speech processor upgrades. Because she is so small, she was able to get the upgrades funded - the first time that her size has been an advantage. We've hit a few hiccups (missing items and magnets that are WAY too strong) but I still love the possibilities that the N5s bring. They are much smaller, lighter and have better programming, so hopefully that will help in the long run. Here are some pics of the old and new processors, and some of the princess running around the house.

PLS scores are in

Today Matilda had her 6 month post-implant communication assessment. Her therapist used the PLS (Preschool Language Scale). She is 13 months old and her score for auditory comprehension and expressive communication was .... 13 months! I was honestly surprised because there are SO many things that she isn't doing yet, but she still scored the same as an average 13 month old who has been hearing their whole life. It still doesn't make me feel 100% happy with how therapy is progressing, but I am so proud of my little princess.