An overdue update and prayer request.

The general con census of the last post is that there are some really faithful blog watchers out there, so I would love to give people an update.

Summer is now almost three...How did that happen? Katie is 15 months and walking about, which still amazes me.
Summer has moved nursery, as we needed a one to one worker, but this was not available where she was. This has been a really positive move and she is a lot more outgoing, has made some friends and its really close to home.

She has had quite a few urine infections recently which does seem to be an on going problem. Summer can now say Trimethroprine though!

Physically she has done a lot of developing this past year. She has her wheelchair which we mainly use outside and on Sundays, she is pretty skilled in using it.

Walking/standing has not been going quite as well. We are blessed with a great physiotherapist who is trying a number of things with Summer. We have looked at increasing the level of splinting, because her Right leg in particular is able to do very little in standing. I have found the last 6 months quite frustrating as we started quite well with the walking, but have had to go back to a standing frame and it feels like we are going backwards at times. Saying that, we tried her new splints and walked outside today and she did really well.

The other main news, and the main prayer point relates to her Surgeon looking at the possibility of surgery to try and stabilise her hips. Its quite major surgery involving muscle transfers and things and it is not very clear whether it will benefit her or not. If we do go ahead there are a lot of very practical implications as she will be in a full cast from waist down.

So if people could pray for real wisdom in which course of action to take and that the medical team may really guide us ( that is our physio, Orthopedic surgeon and Orthotist).

Finally we as a family are well, I will be starting a new job as an OT in a disabled childrens team, which is nearer to home and a new opportunity. Nic is well, ran the Leicester half marathon last year. We are off to camp at the France Spring Harvest site in June which we are looking forward too, oh and we have just been given a hand powered trike tonight, so Summer can try it in the morning.

If anyone is still reading this mammoth post, a big thank you for all your support and I will try and update on a monthly basis...no promises though. Kathy.

Is anyone still out there?

Just a quick post as I know we have not written for ages. Does anyone still attempt to read the blog and would they like some updated info? We are at a bit of a turning point with Summer again.

Send us a comment if you can.

Thank You.

Kathy, Nic Summer and Katie

When I am Three

I really struggle to write things on the blog at the moment, Life is just so full and I am really not a computer person.
Summer is doing really well, growing up so fast. She has been informing us of all the things she wants when she is "free", or three as I think she means.
She still has her walker, "spotty" as it is known and we try and practise with that every day. We are about to get a wheelchair assessment, so she can have another form of mobility!

We talk about a different life, but really this is our life and feels very normal to us. It has been a joy and shock at times to see how quickly Katie does things. she is all ready up and cruising along furniture getting into all kinds of mischief.

I am off to bed as my girls have not bothered with the clock change and choose to be up around 5 ish, which is just FAR to early.

Happy girls
Where the chooclit
Pretty girl
There were no steps nearby so we named this field "The Naughty field"

Walking, of sorts.

About 5 months ago, our new Physio then said shell be walking within 6 months. Today she actually did, a month early. Using a frame across the room and back with a little help turning. When she told us her goal I initially smiled and said "Sure" thinking maybe, but that's a huge challenge. Then about a month ago with very little progress I gave up all together with the 6 month goal, "Maybe in a year or two". After a month of good practice, a bit more motivation from Summer and a lot of effort from Kathy she did a distance with the frame all on her own. Just amazing, what a good God we have.

Of course that isn't the end of the story by any means; just a step on the way to her increased mobility. shes go to fond that walking is better than crawling for a start which will be a challenge, especially at home. Then maybe after a while crutches. A chair is still going to be needed as well. Unless God decides otherwise of course, well keep praying.

Summers bowells are a big source of frustration at the moment.She is on a dairy free diet which takes some getting used too and they still don't know the cause of the change yet. Please pray that her bowels will get alot better and easier to manage for us.

Katie's doing well, not sleeping great but manageable (by Kathy!). We are learning just how easy somethings were with Summer that we didn't appreciate at the time, for example wriggling during nappy changing!! We haven't even got to crawling, walking yet. That will certainly be different!!

Some piccies to appear soon...

Summer update

I am aware I have not really written for ages about how Summer is doing, its easy to just muddle along taking everything as it comes when you are with her everyday.
So how is she? Apart from amazing, vivacious and cheeky she is doing really well. We are still working on standing with her splints and we have a little walking frame which we are trying to use, she is quite reluctant so we just keep perservering. She has a wheeled standing frame at nursery which means that she can propel herself around, which she likes to do.

We had a review about her hydrocephalus and her consultant has essentially said that she should remain fine, the operation when she was 8 weeks old worked so well. We obviously can never totally forget about it, but day to day it does not affect her.

Continance. If Summer ever reads this in the future,then sorry for discussing something so personal! We have started to try and manage her toilet needs a little more, this is going quite well but is time consuming.
In general she is developing so well, she is a joy to be around, she loves her little sister and is always happy.

Prayer requests would probably be 1) For time and energy to carry out physio to get Summer standing and hopefully walking. 2) That we would have her continance managed before she gets to school ( something that cannot be garenteed) 3) That as she has more equipment around her, people would still see Summer and not the things around her.
Most of all that we would manage to parent well, teach her about Godslove and show her and Katie how special and precious they are to us.

Happy Birthday Summer

Wow, what a weekend. A friends wedding on Summers birthday and party on the sunday. We cannot believe she is two. What a journey we have been on. This past year has been fantastic, She is just grown and developed so much, with very little hospital interventions. We have just had time to be a family. When I think about where we were two years ago it is amazing.
I remember such a little scrap lying on a pillow, looking so fragile and broken and now she is a gorgeous, vivacious, cheeky two year old. So many big and little miracles have happened that I can easily forget, but God has been SO good to us.
I remember the verses that people kept giving us, and they are still precious today.

Happy birthday our darling daughter.

I praise you because I am fearfully and wonderfully made.

My frame was not hidden from you when I was made in the secret place.

your eyes saw my unformed body

All the days ordained for me were written in your book before one of them came to be.

Psalm 139

How precious to me are your thoughts O God.