Tuesday, December 22, 2009

10 months ...

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.

Friday, December 11, 2009

2cm makes the difference :)

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 ...

Monday, November 23, 2009

More please :)

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!

Thursday, November 12, 2009

Stimulating the medical economy

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.

Thursday, October 29, 2009

Our weekend

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?

Saturday, October 17, 2009

When to worry...

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.

Wednesday, October 14, 2009

Feeling blessed

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.

Thursday, October 8, 2009

Happy One Month Hearing

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.

Sunday, October 4, 2009

Monster Truck madness

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.

Thursday, October 1, 2009

Our first ear infection :(

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.

Friday, September 25, 2009

Getting organised

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.

Thursday, September 24, 2009

A little more stress-free

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

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".

Tuesday, September 1, 2009

Our story (in brief)

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

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.