We saw the physio again yesterday and she was really happy with Summers' improvements. She is much better on her front, tolorerating a lot more. I now place her in front of a mirror which helps as she rather likes looking at herself!
She is still not great with rolling.. when she wants to she can do it fantastically, but its hard to find things she is prepared to roll and get, if its toys she does not care, medicine bottles, beer cans (Nics) and pens she will go for, all the things she is not supposed to go near!
She will be starting a group in a few weeks time run by a physio assistant which I think will be really good. It will be slightly strange as I think I know the person running it. One of the hazards of working in rehabilitation is that I will come across people I have known as collegues, but I will be in a different role as Summers' mum which is a little strange.
We are beginning to look at child care for when I have to go back to work, such a lot to think about. I do not think Summer will mind as long as she has somewhere to sleep, something to eat and people to smile at....and plenty of cuddles.
Friday, 29 February 2008
Monday, 18 February 2008
Nine months already!
Summer was nine months old a few days ago, I cannot believe she will soon be a year. she is getting so long, she has grown out of her sleep suits in the leg department, but the top half is still baggy.
We finally saw the physio last week and it was good as we now have a daily program of exercise to carry out, but she needs little splints for her feet to try and keep them straight.
I was looking at our blog intoduction before writing this and remembered the purpose of this blog is to inform and to ask for prayer and thats what I would like to do.
It sounds a small thing, but Summer really has to spend some time everyday on her front ( tummy time) to build up her arm strength which is really important for her. Without doing this, moving around or managing a wheelchair would be difficult...problem is she hates it and just yells and rolls onto her back, so I need patience and wisdom for me to know how to try and get her to do it and for Summer to realise that being on her front is fun!
I leave you with a picture as requested by Gerry & Jason
Thursday, 7 February 2008
Never leave an 8 month old with tomato soup!
I have just looked at the last post and realised we have not written for ages, how does life get to busy?
Summer and her dad are having a lie in ( its now 7.25 and all is still quiet), so a chance to catch up.
So what have we been up to? Summer looked very pretty yesterday lunchtime completely covered in tomato soup, she can reach further than I thought!
We have managed to see our new OT, who seems nice and we are waiting to see the Physio, I am quite impatient as I can see Summer wanting to roll and to do more stuff and I need the advice and equipment to help her do that.
A very good friend of ours is running the Edinbrough marathon and wants to raise sponsership jointly for Summer and for ASBAH which is the Spina bifida & hydrocephalus association which is just fab, but I am trying to think of things Summer might need, a trike or bike that can be adapted is my first idea, any others please feel free to comment.
Had better go as can hear stirrings.
Will post new picture soon, as she is changing so quickly.
Summer and her dad are having a lie in ( its now 7.25 and all is still quiet), so a chance to catch up.
So what have we been up to? Summer looked very pretty yesterday lunchtime completely covered in tomato soup, she can reach further than I thought!
We have managed to see our new OT, who seems nice and we are waiting to see the Physio, I am quite impatient as I can see Summer wanting to roll and to do more stuff and I need the advice and equipment to help her do that.
A very good friend of ours is running the Edinbrough marathon and wants to raise sponsership jointly for Summer and for ASBAH which is the Spina bifida & hydrocephalus association which is just fab, but I am trying to think of things Summer might need, a trike or bike that can be adapted is my first idea, any others please feel free to comment.
Had better go as can hear stirrings.
Will post new picture soon, as she is changing so quickly.
Tuesday, 15 January 2008
Beautiful girl with a shoe obsession!
I spent about 45 minutes yesterday on the phone to a lovely lady who has 3 children, her youngest is a gorgeous ( seen a picture), shoe obsessed teenager, oh and she happens to have spina bifida.
Talking to her mum, Summer sounds very similar functionally to what she was like when she was small.
This is the first time I have spoken to anyone else who has experience of SB and it was so positive. This girl uses a wheelchair, but is totally independent, is studying, playing tennis, driving, staying out too late and being a normal teenager... yes there are hard things too, but it was really encouraging.
Thankfully we have a few year to save up to pay for driving lessons, which by then will probably be £80 an hour!
Summers still practicing sitting and finger food, she likes broccolli, but such a mess!
Talking to her mum, Summer sounds very similar functionally to what she was like when she was small.
This is the first time I have spoken to anyone else who has experience of SB and it was so positive. This girl uses a wheelchair, but is totally independent, is studying, playing tennis, driving, staying out too late and being a normal teenager... yes there are hard things too, but it was really encouraging.
Thankfully we have a few year to save up to pay for driving lessons, which by then will probably be £80 an hour!
Summers still practicing sitting and finger food, she likes broccolli, but such a mess!
Tuesday, 8 January 2008
Woodpeckers,Sitting & Trouser.
On saturday Nic looked out the window to see a large bird on the lawn which turned out to be a woodpecker, which is very exciting as at the old house all the wildlife we had in the garden was cats mess, the neighbours football and sparrows ( not that I am knocking sparrows, I know that God cares for each of them).
It was an exciting weekend as Summer has started sitting up on her own, obviously all a bit wobbly, but great to see as she has done it on time, clever girl. She seems very proud of herself.
I have had great fun this week, a friend came to visit and suggested a trip to the Monsoon sales for Summer, so I reluctantly went along, and brought her some trousers and she has been given some to. Very exciting to see her in her first pair. I can see shopping trips being high on things we do!
It was an exciting weekend as Summer has started sitting up on her own, obviously all a bit wobbly, but great to see as she has done it on time, clever girl. She seems very proud of herself.
I have had great fun this week, a friend came to visit and suggested a trip to the Monsoon sales for Summer, so I reluctantly went along, and brought her some trousers and she has been given some to. Very exciting to see her in her first pair. I can see shopping trips being high on things we do!
Tuesday, 1 January 2008
An Unexpected Twist....
During the arthrogram yesterday the surgeon did not find what he was expecting. Instead of a dislocated and rather poorly formed ball and socket they found that it was surprisingly well formed and stable after all. Summers problem seems to be associated with a lack of twist in the femur caused by poor muscle control during her development. This is all great news as instead of having to do complicated things around the joint all they need to do is cut to rotate the lower part of the femur to bring it into the correct alignment. They want to wait until late 2008 to do this next op so we can have a great start to the year without all the things to cope with we were expecting.
This all means that Summer and Kathy were back home yesterday afternoon and we were all able to celebrate at a great New Years Party with friends! No brace, no changes, just our beautiful daughter smiling away as ever!!
Our surgeon seems to be enjoying the challenge of Summer He has never seen anything like this before and she is in his top two of his interesting patients. This twist is measured to be at 110degrees. He has never seen or heard of this this greater than 70 degrees before so was certainly surprised that things are as they are.
As a separate issue there seems to be something else rather remarkable happening in her hip which also hasn't been seen by our surgeon before. Summer has much better control of the hip muscles on the inside of the joint than the outside due to the spinal defect. This is a problem as it is the outside muscles which are more useful in mobility and hip control than these inside ones. Due to the rotation of the femur the muscle which works well may now be on the outside of the hip giving her the movement and control where there previously wouldn't have been any.
He will check this idea out some more as he was thinking on his feet a bit talking to us but what an amazing scenario if it’s right. The relocation of this muscle from the inside to the outside is something he has done before surgically but in Summer’s case it seems that it is happening all by itself!! I will update if this theory is correct.
So we are starting the new year in a much better place than we expected. May it continue through out the year. If its anything like last year its going to be exciting for sure!!
Thanks to everyone who is praying for Summer, no doubt God is at work in her life and those around her who all, especially us, seem to growing though this beautiful little girl. Take a look back to the first entry on this blog to remind yourself of how it all started, remarkable really.
Happy new Year...
This all means that Summer and Kathy were back home yesterday afternoon and we were all able to celebrate at a great New Years Party with friends! No brace, no changes, just our beautiful daughter smiling away as ever!!
Our surgeon seems to be enjoying the challenge of Summer He has never seen anything like this before and she is in his top two of his interesting patients. This twist is measured to be at 110degrees. He has never seen or heard of this this greater than 70 degrees before so was certainly surprised that things are as they are.
As a separate issue there seems to be something else rather remarkable happening in her hip which also hasn't been seen by our surgeon before. Summer has much better control of the hip muscles on the inside of the joint than the outside due to the spinal defect. This is a problem as it is the outside muscles which are more useful in mobility and hip control than these inside ones. Due to the rotation of the femur the muscle which works well may now be on the outside of the hip giving her the movement and control where there previously wouldn't have been any.
He will check this idea out some more as he was thinking on his feet a bit talking to us but what an amazing scenario if it’s right. The relocation of this muscle from the inside to the outside is something he has done before surgically but in Summer’s case it seems that it is happening all by itself!! I will update if this theory is correct.
So we are starting the new year in a much better place than we expected. May it continue through out the year. If its anything like last year its going to be exciting for sure!!
Thanks to everyone who is praying for Summer, no doubt God is at work in her life and those around her who all, especially us, seem to growing though this beautiful little girl. Take a look back to the first entry on this blog to remind yourself of how it all started, remarkable really.
Happy new Year...
Sunday, 30 December 2007
Tomorrow...
Its the night before we have to take summer in for surgery on her hips. This is by far the least scary of the surgery's to date, the first was completely unknown and the second was brain surgery! This is certainly the hardest to deal with so far though.
We have had her home for about 6 months, got to know her, what she does and doesn't like but now it feels like its all going to change again. We don't know how she will sit in a seat, get in a car, how to lift her, fit her in a pram, what clothes she will wear, how to change her nappy or settle her when she cries. We just don't know how anything will work after tomorrow morning and that is scary.
Our church prayed with us this morning that all these things will be sorted out; that she will be well, that the surgery will be a success and that in 12 weeks she will be out of the plaster and back to exactly how she is right now, the perfect girl we love so so much.
We have had her home for about 6 months, got to know her, what she does and doesn't like but now it feels like its all going to change again. We don't know how she will sit in a seat, get in a car, how to lift her, fit her in a pram, what clothes she will wear, how to change her nappy or settle her when she cries. We just don't know how anything will work after tomorrow morning and that is scary.
Our church prayed with us this morning that all these things will be sorted out; that she will be well, that the surgery will be a success and that in 12 weeks she will be out of the plaster and back to exactly how she is right now, the perfect girl we love so so much.
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