Wolf Hirschhorn catch up

On saturday afternoon, Luke, Ellie and I drove down to Ballarat to meet up with 3 other families who have children with WHS. What a great night we had, there were the Dridans and the Sheens all who we had met before and there were also the Doecke's who we hadnt met before. There was alot of talking, and sharing things about what I kids did, do or certain things that help our kids. There is real comfort in talking to other parents who have been where you are. There is a real bond through our children. This is something that I cherish

It was amazing to see the children who are all older then Ellie, and who do so well. Some sit, some walk, and some even talk.... all things that the medical world said our kids would never do. Its nice to see that these kids are proving all that wrong. I hope Ellie also proves them wrong too.

The night ended with some challenges on the Wii... lets just say I have never played the Wii before and need alot more practice

Thanks to Anna & David for having us and hosting such a fun night. Nights like these make me even more excited about the WHS conference in 2011 where we will get to meet more parents and kiddies alike.

Plastic Surgeon update

This morning Ellie had a review appointment with her plastic surgeon. He was happy with how everything was looking. Ellie still has 2 holes in the roof of her mouth after her cleft repair, 1 at the back, which came undone not long after surgery and 1 at the front, where there wasnt enough tissue to cover the hole. He wanted to know if these were causing problems.

Problems?? Probably no... But discomfort yes.

As Ellie is starting to eat more textured foods, as she swallows, a fair amount is ending up coming through her nose, and sometimes getting stuck in her nose. That then leaves us with the horrible job of trying to dislodge leftovers from Ellies nose. So this is not a massive problem, Ellie just hates it when we try and get it out, and I have to admit it is a bit embarassing when you are out, and Ellie sneezes.... and yep you guessed it, this stuck food comes flying out

Ellies plastic surgeon is not to keen on repairing these 2 holes until Ellie is 3-4 years old. The reason being is he needs there to be more mouth tissue and for the tissue to be stronger. Apparently you only get 1 go at this surgery so we want to make sure it is done correctly.

With saying that, he doesnt want to see us for another year, then we will start seriously thinking about when to do the surgery to fix these 2 holes

Just some pics...

An open letter to all professionals - By Pia of 'The crack & the Light

Todays post is kindly borrowed from another blog called 'The crack & the light' By Pia, After I saw a beautifully written piece called 'An open letter to all professionals' on the 'Kidz' Blog

It just struck a chord with me as it rings so true. Enjoy!

Hello?

New teacher, or therapist, or doctor? Is that you?

Oh hello…

I just wanted to chat with you a second. To caution you. Or warn you.

Please, tread carefully.

You see, what you might not realize as you look at me, talk to me, tell me your opinions, our options, our lack of options, and your predictions of our outcomes is that; well… you see that heart?

The slightly broken, definitely bruised one?

Yeah, that’s my heart.

My slightly-broken, definitely-bruised heart.

Now, I realize that as you look at me you might see…a confident parent… or an angry parent…or a happy-go-lucky parent…

You might think that I understand everything… or nothing…… or that I have all the experience in the world because I have done this before… or that I know the rules… or that I don’t know the rules and that is for the best….

You might believe… that I am high maintenance… or overreacting… or maybe neurotic… or disengaged and uninterested… or that I don’t really care… or maybe I care too much…

But regardless of what you see, what you think, or what you believe, this is what you should know:

I am broken-hearted. And it doesn’t matter if it is the first day or a century later. It doesn’t matter where in the “grief cycle” I might be. It doesn’t matter if the wounds are healed, or healing, or fresh and new. This heart is bruised. Slightly broken. Different than it once was and will ever be again. And when you speak, or don’t speak, in judgment or not, my heart is out there.

Some of “us” parents… the ‘special’ ones… can be a pain in the ass. I know that. WE know that. But we are fighting a fight we never planned to fight, and it doesn’t end. We don’t get to clock out at the end of the day. We don’t get a vacation from it. We live it, everyday. We are fighting without knowing how to fight it, and we depend so much on you to help us. We have been disappointed, by you or others like you. And we are disappointed in ourselves. We are your harshest critics. We are our own harshest critics too. We are genuinely fearful, and driven, and absolutely devoted. And we also know, we need you. So please, be careful with us. Because as hard and tough as we may look outwardly, our hearts are fragile things.

Neurology update

Yesterday we had an appointment with Ellies neurologist. His first words were when he saw Ellie was, "Mel she looks well, she has grown up" He also noticed how alert Ellie was, how she was using 2 hands to explore and reach out and how much stronger she was. It just reinforced everything that we too had thought. Ellie has changed alot of the last 4-8 weeks and it was nice to hear this from someone who hadnt seen Ellie in a while.

I filled him in on how Ellie was going 'fits' wise & that since her last meds increase the fits that we were seeing 4 weks ago are no longer, however she is till having a few questionable moments every couple of days.

As Ellie is on the maximum dose of both Trileptil and Kepra, are these questionable moments enough to change Ellies meds? I dont think so and neither did Ellies neuro. Yes she still has times occasionally where here eyes roll back, or her mouth does funny things. But they both are quick and not promminent long fits. So the risk to wean her off her current meds and to try new ones brings the risk of decreased seizure control. However if we notice that over time that Ellie is having more prominenet, frequent fits then we may need to look at new meds.

We dont need to be see Ellies neuro till March/April next year... that really is a sign that things are going well. YAY!!!

Swimming... well more like a dip in the hydro pool

This morning Luke and I took Ellie to the Monash Aquatic Centre - Hydrotherapy pool. At first once we got in the water Ellie wasnt so sure, but after about 10 minutes she some what enjoyed it. I wouldnt say she loved it, but I think in time she will.

Over the next few weeks Luke and I will keep taking her just to get her used to the water and moving in it. Once she is comfortable in the water, one of Ellies physiotherapists will hold a session with us in the pool showing some exercises that will help Ellie. The plan is then for us to take her a couple of times a week and about every 6 weeks, the physio will do a pool session and review what exercises she is doing.

Ellie looked unbelievably cute in her bathers, they were a 2 piece with little bottoms and a rash vest. Would you beleive we didnt remember to take a photo of her in her bathers or in the pool.... Oh well we will do that next time.

I have to admit, this morning didnt feel like therapy, or hard work on Ellies or our behalf. It felt like normal fun, normal kid like fun... which was nice!!!

I think ill like this pool thing!!

Ellie Update

Ellie has been doing really well at the moment, she hasnt met any new milestones, but she is slowly creaping closer to some. Lately when she is rolling around, she is getting her bum up quite high in the air, as if she is ready to crawl. Crawling is definately a long way off, but when she is in this position, if I help her with her hands and give her some encouragement, she actually lifts her head up from the ground by pushing up on her hands... This is massive!!!

We also saw Ellies dietician last week, and she is very happy with the 3 meals a day that Ellie is eating. She still wants us to keep her on formula, as she still isnt eating massive amounts of iron rich foods such as red meat. But she wants us to start giving more savoury meals at lunch to help this.

We are still working on trying to get Ellie to drink herself. Its not that its not going well, but its not going to great either. I just want Ellie to be as independant as possible, and hopefully able to drink and feed herself.

We also bought Ellie a friend, a 4 legged friend called Coco. I am hoping they grow up to be best of friends.

We also gave Ellie a hair cut recently, not a big one. We just had to tame the mullett that was forming and tidy the top... thank god she has a hairdresser for a mum.