The amazing Miss M

Its been a while

2012-01-28T20:00:00.000+10:00

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

2011-11-28T15:54:00.000+10:00

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

2011-09-27T11:16:00.000+10:00

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

2011-09-07T17:27:00.001+10:00

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

2011-08-25T12:23:00.000+10:00

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

2011-07-20T19:56:00.001+10:00

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

2011-07-16T20:49:00.001+10:00

Photos

2011-07-16T20:23:00.000+10:00

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

2011-07-16T20:15:00.000+10:00

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

2011-03-16T16:46:00.003+10:00

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...

2011-01-18T17:01:00.003+10:00

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...

2010-12-28T20:31:00.003+10:00

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

2010-09-03T11:45:00.004+10:00

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!

2010-05-28T19:32:00.003+10:00

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

2010-03-10T13:11:00.003+10:00

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.

Happy 6 months hearing Miss M

2010-03-07T13:50:00.002+10:00

Today marks 6 months of hearing for Matilda's right ear (the activation was done over two days). In many ways I have been dreading this day. When I think back to 6 months ago, this is not how I thought things would look. I thought that my very bright, intelligent little girl would be babbling, talking alot of the time, and have a few words in her vocabulary. I think that I have high expectations, but I didn't think that they were unrealistic. The past few months particularly have been frustrating. Matilda's therapist and audiologist think that she is doing fine, but I don't think fine is good enough. My mummy instinct tells me that there's a reason that she isn't talking, but I just haven't worked out what it is. We're still in the process of getting a 2nd opinion (we access the only AVT service in our state, and the next closest service is 11 hours away, but it will be happening soon.

I have decided though, that even though it is important for me to advocate for my little girl, I also need to be mindful of just how far she has come. 6 months ago my little girl wouldn't turn her head when someone was clapping. Now she will smirk and laugh when I whisper her name. 6 months ago Matilda had no real way of communicating. Now she will crawl to the door and yell ee-ah to indicate to me that she wants to go on the swing.

So my little princess, what a huge 6 months it has been. You have come so far in your short little life and I know that the next 6 months will bring many new and wonderful experiences for you.

Happy 1st birthday my princess.

2010-02-01T07:58:00.003+10:00

Wow, I can't believe that today, my little princess is 1. It seems like such a long time ago that we calmly drove to the hospital and had a wonderful waterbirth and first met our beautiful Matilda. We had two days of newborn baby bliss before being thrown into the world of hearing loss. I could never imagine what we have been through over the last 12 months, but it has definitely been worth it.

At 12 months, my little girl has been hearing for just under 5 months. Receptive language appears to be fantastic. She understands countless words and phrases, including up, down, outside, swing, park, ducks, Daddy, Mummy, the boys, car, walk, baby, eat, drink, food, Anzac slice, milk and so many more. Expressively, we're getting there. We've heard (on at least a few occasions)

- 'ahh' (aeroplane)

- 'ee-ee' (monkey)

- 'eeow' (cat)

- 'eeee' (food/hungry)

- 'mm' and 'or' (more)

- 'ee-ah' (swing)

- 'eee' (slide)

- 'oo' (train)

- 'bbrr brr beep (car)

- 'wah' (baby crying)

- 'heyo' (hello)

Her favourite sound at the moment is 'ee-ah'. We are still really lacking in consonant sounds, but I'm trying to be patient.

Most of all, Matilda is a happy, cheeky, funny little girl who loves people, but particularly her little family.

We love you little girl.

Getting the food in...

2010-01-17T11:01:00.003+10:00

In anticipation of Matilda's weigh-in tomorrow, we've been trying to tempt her with lots of food. While I was out, someone decided to let her loose on a bowl of yoghurt and this was the result (and yes, she's in the bathroom - my husband was cutting the boys' hair).

We try to give her fruit every day, but she won't have a bar of it. See what happened to the poor banana.

Therapists

2010-01-16T17:46:00.002+10:00

I'm trying to work out whether I'm just being impatient with Matilda's progress, or whether I should be investigating other options for her. We see a lovely AVT who is very dedicated and I know she cares about Matilda. BUT, I feel like I need more guidance as to what else I could do to guide Matilda's language development. She says alot of 'mmm' and squealy noises, but still not a lot of consonants. So, I've put in an application to receive therapy from an interstate service (as we currently attend the only AVT service in our state). This service would be delivered via video-conference, which is a pain in itself, but I figure that it is worth trying.

I'm not sure how it will work (seeing two different therapists) particularly when they won't be able to liaise with eachother, but I guess we'll give it a try. The only other option is moving states, which we've considered, but the place that we'd go to has no ENT services so we'd have to fly to a specialist in a different state. Crazy huh? Think I might consider doing my AVT training...

We wish you a Merry Christmas and a happy new year :)

2010-01-01T20:14:00.002+10:00

Its been a crazy few weeks, but we've got through. The kids all had a great Christmas and got way too many toys. I've made a new year's resolution not to buy anymore :).

Matilda is being stubborn with her words at the moment. There are sounds that I know she can make, but she chooses not to. She is understanding so much though, so I'm hoping that consistency in speech will come soon.

10 months ...

2009-12-22T08:24:00.003+10:00

Yesterday marked 10 months since we got Matilda's official diagnosis - severe to profound bilateral sensorineural hearing loss. 10 months seems like a short space of time, but to me it seems a lifetime ago. I remember sitting in the room with the audiologist. Originally the junior audi was there, but she kept saying that maybe the equipment wasn't working properly. I think she realised what was happening, so she got the other audi to come in, who confirmed that everything was working, and said the word 'profound'. I didn't know much about hearing loss at the time, but I knew that was bad. I looked at the tiny little girl in my arms and I just cried ... alot. The audi was great - got me tissues, reassured me that Matilda would be OK, but I could tell that she was upset too (later I found out that she'd just found out she was pregnant). I left the hospital that day wearing sunglasses (so that nobody could see that I had been crying). I ran into a work colleague and tried to make out that everything was fantastic.

Since that day, things have been a whirlwind. HEAPS of appointments, too much time in a soundbooth, CTs, MRIs, surgery, etc. But now, my girl can HEAR! Not only that, but she hears really well. She responds when I call her name most of the time - much more than her normally hearing brothers do. When I whisper her name she turns and gives me a big grin. She has started dancing. Whenever there is music on, Matilda will be bopping. Last night David was playing Christmas Carols on the piano. Matilda sat there bopping to the music and loving it! When David stopped playing, she turned to him, looked at the piano keys and did a little dance as if to say "come on Dad, I'm ready to dance". As soon as David started playing again, she continued her dance.

I could never have imagined 10 months ago, that by Christmas my little girl would be hearing at almost the same level as any other kid. That she would be rapidly catching up to her hearing peers in her language development. That she'd race to the kitchen to see who turned the tap on or what was cooking in the microwave. That she would hear the kookaburras outside and try to find them. I am still anxious about her future, but feel so blessed that in 10 short months, my little girl has come so far.

2cm makes the difference :)

2009-12-11T17:26:00.004+10:00

I took Matilda for her fortnightly weigh-in and measure today. I've been so determined to get food into her that it has almost become an obsession. Anyway, she measured in at 65cm - that's a gain of 2.5cm in 2 weeks which is fantastic. It also gets her to a great milestone - the 1st percentile :). Our paed said that when they're under the 1st percentile they really worry, but hopefully this is the start of some great growth. Her weight hadn't changed (6.2kg) but it often lags behind. We're thinking that the CMV has just battered her around so much that it has taken this long to start seeing any improvements.

On the speech side, Matilda is now saying "ah-ah-ah" for plane (very cute to hear her say it with the same intonation that I use), "ee" for monkey and "ee-ow" for cat. Still waiting for the babbling, but I'm trying to be patient ...

More please :)

2009-11-23T09:11:00.001+10:00

Things have been a little crazy here lately but its all been pretty good. Matilda's blood tests all came back OK, so I guess that's good, although we don't know why she isn't growing. We have a few more to do, and then we'll see where we head.

I had been getting a little frustrated/anxious/impatient after reading other people's blogs and seeing that their kids were saying more things than Matilda at the same time. I've been trying to recite "in His time" over and over, but I've still been frustrated. Anyway, at dinner last night I was taking a while to feed Matilda and then she started saying "orrr". At first I though it was a coincidence, but I took a moment before filling the spoon again, and she said it again. We just have to work on the 'm' sound and we'll have another word. I am very excited.

On the other hand, not so excited that Matilda's two older brothers decided that today would be a good day to be sick. E had an asthma attack last night and then both of them woke up with croup. I am SO tired that I rung the wrong number to say that N would be away from school!

Stimulating the medical economy

2009-11-12T09:32:00.002+10:00

Over the past week I have been helping to stimulate the Australian economy by paying out lots of money to the medical profession. It started with a visit to the paed on Friday to discuss Matilda's lack of growth. Ofcourse the paed didn't know anything about CMV and its effect on growth, but he took a thorough history and ordered enough blood tests to overfill a pathology request form. The result - a $260 bill.

Next we headed to the pathology lab, who after 1 1/2 hours decided that Matilda was too small to have so many tests (which ofcourse is the REASON she's having the tests) so they need to take small amounts of blood over a few weeks. Oh, and some of the tests aren't covered by medicare, and because there are so many, some will be out-of-pocket tests. We haven't got the bill yet, but apparently some will cost $300-$400 EACH!

This week we headed to the dietician, who told us that while she can help Matilda gain weight, she can't make her grow (which is what she needs). She said that we're doing the right thing, and just to add more cream to her foods. Her bill was only $85 - how nice. Good thing is that she is happy for me to just phone her and let her know how things are going.

So, a week's worth of appointments will result in about $1000 worth of bills. Did I tell you that this is also the week that I need to resign from work because, with all these appointments and no family support, I can't go back to work in January.

I am thankful though - we have the money that we need to pay the bills and I know that whatever else we need, God will provide.

Our weekend

2009-10-29T08:17:00.003+10:00

OK, so it is Thursday, but its been a big week. I feel like the year is getting away from me. Less than two months until Christmas and just over three months until Miss M turns 1! I don't want my little girl to grow up so fast, but she has other ideas, as the photos will show. Despite being only 60cm tall, Miss M thinks that standing is the best thing to do. While the inlaws were visiting, she decided that she wanted to try and open the back door. This morning, she climbed onto our lounge - we will definitely have to watch her now.

On Sunday we were invited to a 3rd birthday party for a precious little girl. She had four horses (yes 4) at her party, and Miss M thought that horseriding was pretty cool. Maybe we could get one when we buy our acreage?

When to worry...

2009-10-17T09:28:00.004+10:00

A few weeks ago when we were at the GP for Matilda's ear infection he asked to weigh her. She hadn't put on any weight since before surgery (6 months old) so we had to return yesterday to re-weight. Well, the little munchkin STILL hasn't put on weight. Its been close to 3 months, and we're at the same height and weight. She seems fine - she's pulling herself to stand, crawls, sleeps well etc, but she just isn't growing. We'd been warned that this may be an issue with CMV, but I guess we're just going to have to deal with it.

So, if anyone has suggestions on how to get an 8 month old to gain weight, I'd love to hear them. We have a paed appointment at the end of November (yes, that's the earliest we could get - its a long story). Her current stats are 6.1kg (no idea what that is in pounds) and 61cm in length.

Feeling blessed

2009-10-14T13:33:00.003+10:00

Those of you that know me personally will know that this year has been pretty awful for our family. The highlight obviously was Matilda's birth, but it has been pretty bad from then on. Our first low point was Matilda's diagnosis which we thought at the time was the worst thing that could happen to us. Just three months later our wonderful neighbours lost their twin daughters and another family members in an horrific car crash just near our home. I will never forget the moment that the police arrived in our street to tell the neighbours what had happened. The next morning I had to sit with my five year-old son and tell him that two of his dear little friends had been killed. It felt so wrong and was something that I hoped I would never have to do again. Tragically just a few months later I sat down again with my son to give him similar news - his school chaplain and the chaplain's wife had been killed in another car crash. It is not fair that my children have attended more funerals in their young lives that my husband has in his 31 years of life. It isn't fair that my five year old thinks that when police come to your house, it is to tell you that someone has died. I was reminded of all these emotions when my neighbour dropped by this morning. I have been struggling to function over the past few weeks, but to see this man, obviously still overwhelmed with grief, made me remember that I am truly blessed. I have three wonderful children who I get to hug each day. My life may not be a bed of roses, but its a darn sight better than it could be.

So, not wallowing in self pity, here's the positive side of this post :). For the past few weeks Matilda has been saying something that has sounded a lot like "hello". I figured that I had my 'mummy ears' on, so I hadn't really mentioned it to anyone. Well at today's MAPing appointment, our audiologist switched Matilda back on with her new MAPs, and we all said hello, as we normally do. Matilda looked up and said "hello" as clear as day, and continued to repeat it back to us. How amazing! Only 8 months old and hearing for just over a month. It was also fantastic to hear that the right implant is working OK. Her high frequencies have gone up, but the audiologist said that the MAP has just leveled out, which is totally normal.

So today I'm feeling pretty blessed and grateful for my little family. I'm also grateful because the Nucleus 5 just got TGA approval in Australia, so hopefully they'll be released here soon (well actually, not until February, because apparently all the stock has been sent to the lovely folk in the US and they didn't leave any here).

Just to round out my happy post, here's some pics of my three beautiful cherubs.

Happy One Month Hearing

2009-10-08T09:02:00.002+10:00

Today (or yesterday, depending on which ear we're talking about) marks one month since Matilda's cochlear implants were turned on. We have seen such a difference in what she can hear (which I guess isn't hard, given that she could hear almost zero with her hearing aids). She is responding to all the Ling sounds, turns quite frequently when I say her name, always turns when I say "where's Daddy", is fascinated with the sound of the microwave and yesterday heard rain for the first time (we're in a little bit of a rain drought here).

I've been a little down though - I think that I have such high expectations of how things *should* be, that reality doesn't match up. We had a bad MAPing appointment this week, which probably didn't help. Matilda didn't respond well to quite a few electrodes in her right ear (actually she didn't respond at all). She was really distracted, and she did have an ear infection, so I'm praying that this is the reason and that next week we'll be back to normal. Does anyone else have one ear that is consistently worse than the other, despite being implanted at the same time?

I'm also trying to decide whether to put E, one of Matilda's older brothers into pre-prep next year. He is not eligible for the kindy program near us, because his birthday is in July, but I could get him into a private program. Pros are that I would have more time to do things with Matilda, and maybe some sanity time, but cons are the cost (just over $50 per day) and the fact that E doesn't want to go and I feel guilty sending him. So, still undecided on that one.

Upside is that we have therapy today, after a month's break. I feel like I need some guidance so it will be great to go.

Monster Truck madness

2009-10-04T08:41:00.003+10:00

We were given tickets to see the Monster Truck show, which was on in our area. Now I was initially a little reluctant to take Matilda, but then I figured that hey, she needs to get out, and we've got ADRO so the sound shouldn't be an issue. Well, we went along and she LOVED it. It was extremely loud, but she coped really well (probably better than most people there). Our audiologist had told us that ADRO would make a loud motorbike and a jet engine sound about the same, so this was tested when we saw a car that had a jet engine attached. Matilda wasn't phased by it at all. There was a full-on fireworks display, and she was excited about it, but not scared. There were a few moments where she looked at me, obviously saying "heck that was loud", but she was fine. My husband thinks that she's going to turn into a meathead now.

Our first ear infection :(

2009-10-01T15:50:00.002+10:00

Matilda is 8 months old today, and she has her first ear infection. I should be thankful that she's had 8 months without a single issue, but it still scares me a little. I know that the risks of complications from ear infections are rare for kids with CIs, but they are there.

She is such a happy baby that I almost dismissed the signs. She has been a little grumpier, and pulling at one ear, but she does have two huge processors sitting on her ears, so it isn't really surprising. Anyway, I decided to take her to our friendly, but CI clueless GP. He has never seen CIs before and said that he had never looked in an ear of someone with a CI (I explained that it wouldn't look any different). One of her ears is red, so we've got antibiotics and hopefully that will clear it up quickly. I'm undecided as to whether I'll ring the ENT. We live 90 minutes away, and literally only just got back from our latest trip to the big smoke so I really don't want to travel down again.

While we were at the GP the nurse also weighed Matilda (to determine the antibiotic doseage). It looks like she hasn't gained weight for two months, which is what I was fearing. All my kids have been small, but not this small. Matilda is 8 months, and weighs 6.1kg (just over 13 pounds). We have been told that growth problems may be a symptom of her CMV, but I don't know what we will be able to do about it. We're heading back to the doctor in two weeks to see if she's gained any weight, so I'll be doing my best to beef her up.

Getting organised

2009-09-25T14:24:00.003+10:00

Before we start a new term of AVT, I wanted to get a little more organised. After being inspired by this and this I decided to make our own. It is probably a little hard to read, but the headings are "sounds to focus on this week", "current goals", "current activities", "books", "Ling sounds" and "Learning to Listen sounds". Some parts we won't use much for a while, but I like the big reminder that I should always be doing something. It is also prompting me to read another book when I have a spare 5 minutes.

A little more stress-free

2009-09-24T16:57:00.006+10:00

The babyworn cables have been bugging me, probably more this week because I'm so tired. So when I saw this post about using a headband, I got inspired. I tried velcro dots, but they wouldn't stick, so I just used two layers of elasticised lace and slipped the CIs between them. It works SO well. Also note in the photo below that my 7 month old is reading a book (albeit upside down).

Thanks Lily's Mum - our audiologist loved it too. I figure that when Matilda is moving around more I'll attach a bilateral clip (like an Oliver clip) just in case it falls out (which would be unlikely).

Apologies and my update

2009-09-24T16:46:00.005+10:00

OK, so I haven't quite got the motivation to be a good blogger yet, so I'll have to do an update of the past few weeks.

Matilda's switch on was on 7/8 Sep. Despite having an audience of the Health Minister, a Rugby player, and lots of family, she wasn't worried at all, and took everything onboard.

We've already noticed that she's responding to many sounds, including most of the Ling sounds, her loud brothers, and cars driving past. It will be so exciting to see her develop over the next few months.

The first pic is us getting our photo taken with the important people and the second is Matilda excitedly telling Grandma about all the new sounds.

We've had two MAPing sessions since switch-on and both have gone really well. I wish I'd taken video of last week's, because when I sat her down, she immediately crossed her arms, turned to where the puppets appear and turned back to the audiologist as if to say "Hurry up, I know what I'm here for, let's get on with it".

Our story (in brief)

2009-09-01T09:51:00.000+10:00

Matilda was born in February 2009. She is my third child, and a very much wanted and prayed for little girl. Her labour and birth was short, and quite uneventful. She was born into water, at our local private hospital. At two days old, Matilda had her first hearing screen, which resulted in a 'refer' result on both ears. At three weeks old, Matilda had a full set of hearing tests, which showed severe to profound hearing loss in her left ear, and profound loss in her right ear. She got her first hearing aids and seven weeks old, started Auditory Verbal Therapy at eight weeks and had bilateral cochlear implant surgery at 6 1/2 months.

Despite everything that Matilda has been through in her short life, she is a delightful little girl, who has a smile that will melt you heart and just loves to communicate with anyone her will pay attention to her.

Up and running

2009-09-01T09:37:00.000+10:00

After reading so many blogs for the past few months and finding them immensely helpful, I've been thinking that I should start one of my own. So, here it is. Apologies if it is a little low in value at first, but I've never done this before.