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.