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!

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!

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...

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.

New Years Eve.

Yes its true, what a way to start the New year. Summer is booked in for surgery that morning. I think the consulant cancelled some things to fit her in, so we cannot complain too much. We had the pre op chat where we consent to the operation. It sounds like they may well be breaking both her legs to get them back in the right position which sounds so horrible to me, but apparently they heal at this age in about 4 weeks.

I have been thinking as the year has almost finished about the past 12 months and I can say for myself ( Kathy) that it has had one of the worst and one of the best moments of my life, and lots in between. Our blurb on the blog says that we do not know where this journey will take us but we will trust God, and that is still the case, not sure how we would of got through this on our own.

One great thing about the operation being delayed is that I can go mad and dress Summer up in al the pretty things she has not been able to wear, which is great fun for me.

Christmas greeting to everyone, in case we do not post anything else for a while.

I leave you with Summer enjoying playing in the christmas decoration box, who needs presents at this age!

Change of Plan!

Stop press. Summer is not going to have the operation tomorrow. I rang to let them know that she has a stomach bug & cold, so it will be rescheduled when the consultant has a space. To be honest we are both a little relieved as this was just a really busy week and we could do without anymore stuff. We are keen to do the Op though, so we pray a date will be available soon.

Surgery on Wednesday

Quicker than we thought Summer is now booked in for surgery on Wednesday of this week. She has to go in for Tuesday afternoon and then back in in the morning. She is still a bit poorly with a cough and the runs. I hope this is getting the runs out the way before the brace is on as it will be much harder to manage such things then.

Please keep praying for us all. The effect it has had particularly on her hydrocephalus has been amazing. I cant wait to see the same happen on her hips now.