Summer is doing so well, growing up so quickly. we have moved her to a big girl bed as Katie is now far to big for her cot, so needs Summer's bed.
Summer is a complete wizz in her wheelchair, it is lovely to see her so independent. Only problem with her growing up is that we need to start shopping for a new wheelchair.
Thankfully we are not awaiting any operations at the moment and have reduced our hospital visits. She is developing really well and looking forward to starting school next year. Praise God.
We have just finished celebrating Summers third birthday. She has had a party with 12 friends ( not at our house thankfully) and gone to bed full of chocolate cake and too many presents, just like any other three year old. Katie is also happily asleep hense writing this.
When we think back to the day of her birth and the few months that followed, I do not think we could have believed we would be able to have such a " normal" day as this.
I am reminded that it says that God can do much more than we can ever ask or imagine and its true.
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.
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.
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, 28 August 2009
Happy girls Where the chooclit Pretty girl There were no steps nearby so we named this field "The Naughty field"
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!!
In January 2007 at our 20 week scan we were told that our first baby has spina bifida. As Christians we started this blog as away of sharing with our friends & family what has been happening and to ask for prayer. We have been really blessed by people’s responses and we hope that we may touch other people through our situation. We do not know what is going to happen, or how this will end, but we do know that God is in control.
We now have our beautiful and amazing daughter Summer and have just become a family of four!
