"I do talk to you"

I was sent this verse by another mummy with a special little man as she thought it was fitting to Jack. She was right, its absolutely perfect!

"I Do Talk To You"

I know you can’t hear me....but I do talk to you.

And I hear everything you say to me too.

I hear when you laugh, when I do something funny.

I hear you yell "Hooray" when I try so hard.

I hear you tell others how you’d never trade me for the world even with all the trials I came with.

I hear you thank God for what a blessing you have been given.

I hear you encourage me when I can almost do it.

I hear you cry, too, when it gets a little harder

And when you ask God "Why?!" your baby.

And I know you know I understand somehow.

And you know I listen when you talk to me too.

But, I want you to know, mom...........

I do talk to you.

Jessica Soukup 1998

Long time, no type!

Hello everyone,
Sorry I haven't got round to writing to you all for a while. Its been hectic with Christmas and then getting the kids back at school. Just to keep ourselves busy we are moving house as well. Well we don't like to keep things stale!
Alot has been happening with my boy since we last 'spoke'. We have had his test results back now and he has finally had the Von Willebrands disease confirmed. He has type 1. They have also said that his platelet count is very low as well which is not symptomatic of type 1 so yet more testing coming up for him :o(
Since the last time I updated Ive had a very lovely lady contact me and put me in touch with some other lovely people who's children have the Mosaic Monosomy 21 as well! It feels great to be able to discuss little things that we have found with Jack and find what their special people do as well. They definitely are a very special bunch of children. It can occasionally be quite scary as well though as there are things you find that haven't been discussed with you that have been discussed with others etc. Have called our genetics team and we are waiting on an appointment to go and chat about these other families and their children.

Jack also seems to be having more and more trouble with his legs. His falling has got quite bad again and he awoke twice in the night crying, rolling round and holding his knees. We have an appointment to see someone about his legs on the 8th of Feb so I will update you all then as to what they say.

He has taken SOOOO much to his little sister now and calls her Baboo which is just one of the cutest little things. His speech is still taking baby steps forward which is wonderful to see and he seems so proud when he says something that people can understand. The frustration that he must feel sometimes when he is trying to tell you something and you don't know what he means. Though bless him he never ever lets it get to him. We have to feel proud for that as we are obviously doing something right with him.

Me and my boy at christmas x

Christmas preparations

Hello all

Wow the temperature has certainly dropped just lately!
We had some snow yesterday morning and Jack was exceptionally excited by it. He was jumping up and down and shouting wowee. He is just so cute. Christmas MAD! When he says it, it sounds like "mihmah"
He seems to have a big problem with the cold though. He cries and cries when his hands and feet get cold. He walked to drop the girls off at school yesterday morning which is only 5 minutes away, he had a thick pair of socks on and his wellies. Ended up having to carry him all the way back as his feet were so sore. When I looked when we get home they were purple because they were so cold. Definitely something else that we are going to have to ask about when we next see genetics.

The girls all keep changing their minds about what they want for Christmas. The elves have now made their gifts so they aren't allowed to change again. We have managed to get them some really nice things this year so we are really looking forward to Christmas morning. Its the time of year where I most enjoy having such a big family.

Transition meeting

Hello everyone,
Whilst Ive got a minute thought I would update with how we got on with our transition meeting at nursery.
I wasn't sure at all what to expect as obviously Ive never had to go to anything like this with the other children. Luckily I had taken my dad with me as it would have been a little intimidating if I hadn't I think. I'm not great in these types of situations, although I must say I'm getting better lately at standing my ground and being able to fight my own corner instead of crawling under a rock!
Anyhoo, we discussed his needs and what we feel would be best for him. Mainstream was being banded around a couple of times, which when first said sounds wonderful and exciting and it would be very easy for us to overlook whats probably best for him with the prospect of him going to mainstream. Since his progression has been so fabulous since he started at the resourced nursery we feel that for him to continue with the same care is for the best.
He will be assessed every 12 months anyway which is great as maybe after the first 12 months he will have progressed enough to attend the school where his sisters go.
We are hoping for a mainstream school with a special unit attached to it.
I have a couple of main concerns about the mainstream route. Jack has a tendency to get pushed around by other children and instead of either crying and running away or fighting back, he just gets up and carries on. I think other children just see him as the weak one. Normal in children of this age.
Also we feel that because he is such a good little boy and causes no trouble. He could well get 'forgotten' about.
I think also the thing that we all need to keep in our minds is that because there is no literature to read about his condition, we have absolutely no way of knowing whether there will be a plateau to his learning.
So in an ideal world he will go to the special unit first. If he does this and then becomes ready got the school his sisters go to he will slip straight in as he already knows the school and most of the teachers and also his sisters would look after him. If he had started at the mainstream and then it being realised that he wasn't ready, the move to then another school he didn't know would be far far worse.
So paperwork is in and we are on a waiting game.

Blood tests!

So it was blood test day today. I wasnt able to go with him as it was at 9 in the morning and I needed to get the girls to school. His dad took him instead.
They took a load of blood for testing and are confused as to why he didnt bleed once they had finished doing the blood test. They are finding his bloods very confusing as some things dont add up like they think.
I think its going to be another long couple of weeks whilst we wait for the results back from these tests. Just hope that it turns out to be something very simple.
The not knowing is always the most worrying part of all this. I HATE it. The worst things always go through my mind and no matter how hard I try I just cant shake the dread feeling.
He's such a good boy though, he never lets these things get to him and is soooo well behaved whilst they do them.
Fingers crossed that it all just turns out to be the simplest form of Von Willebrands.

Hospital on Friday

We have a hospital appointment for Jack on Friday. This is the part that I dread with him, it feels so cruel when we have to take him for blood tests.
He is having the test to distinguish which type of Von Willebrands disease he has. None of the types are going to particularly change his life. Its just going to mean that if he needs any type of surgery in the future he will need different medications to stop him bleeding out.
I will feel ever so relieved once this test is over as we can then be given a card to carry around with us. It does worry us at times because he can be so covered in bruises that he looks like he has been hit :(
He's my little peach :)
Will let you know how we get on with the appointment.

Proud Proud Proud

Hi all,

Thank you for checking in with us. Just a quickie for now to tell you all how PROUD I am of Jack. Everyday he seems to learn something new and even though its only little steps in the bigger picture, its mountainous steps for Jack.
Today he wanted some sweets when he came home from nursery and he said...............................please :)
How fabulous that even though he has such little speech he still has really beautiful manners!