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.
Friday, 6 November 2009
Friday, 28 August 2009
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...
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...
Tuesday, 30 June 2009
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.
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.
Tuesday, 19 May 2009
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.
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.
Wednesday, 22 April 2009
Climbing Stairs
Summer has just climbed her first full flight of stairs at a friends house. Hopefully she can do ours once we have carpet. What a great day.
Tuesday, 21 April 2009
The joys of motherhood
Katie in baby bouncer hanging from door,
Not long had food.
Summer is helping Katie to bounce by pushing her head into Katies tummy
Katie is Sick all over Summers head.
Both girls looked quite pleased with the result.
Both girls had bath that evening!
Not long had food.
Summer is helping Katie to bounce by pushing her head into Katies tummy
Katie is Sick all over Summers head.
Both girls looked quite pleased with the result.
Both girls had bath that evening!
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