Tuesday 27 November 2007

Another Chapter Begins

With the house in upheaval and us travelling round the country we had nearly forgotten about our Monday appointment with the orthopedic doctors. Last time we saw them 5 weeks ago we were told that the brace may well come off this time so we were hopeful about that.

Things didn't go well during the scan and our consultant was brought in to take an extra look. It appears that the progress we have been seeing has only been while her hips were in the position the harness puts them; stuck out to the sides. When her legs are moved to a more normal position the are moving out of socket and are not stable.

This means that she will need surgery again and soon. Before Christmas we were told so we are waiting on the letter with the dates on now. It is likely that the surgery will be in 2 parts. Firstly doing an arthrogram and depending on the results moving bits around in each hip to make them more stable. She will need to be plastered up from her abdomen to her feet which is probably going to be the hardest thing for us, not Summer who seems to be phased at nothing, to cope with. They leave holes for the necessities of course but these will get smelly. After 6 weeks she will then have another general anesthetic to remove the plaster and complete the surgery as necessary. Then another 6(ish) weeks of plaster before it will hopefully be off for good.

So from hoping the brace will be removed to this. Not what we were expecting or wanting at all and we are both gutted. I'm sure we will get through it and of course there is nothing we can do about it so we will adjust and keep on going; "press on to the goal to win the prize". It just feels a little further away tonight than it did last week.

I like to finish these on a slightly merrier note. While the serious consultant was giving us this bad news and telling us what was going to happen now Summer wouldn't stop laughing and blowing raspberries at him. Each time I, or anyone else in the room, looked at her we couldn't help but laugh back.

We are so grateful to have such a beautiful little girl and we remind ourselves, with the surgery coming up, its not brain surgery like last time!!!

Saturday 17 November 2007

Six months already.

Yesterday Summer reached the grand old age of six months. How did that happen?
She had a dinner of pureed carrot to celebrate!

We had our renal scan yesterday. They were amazed at how chilled Summer was. As long as she has something comfortable to lie on and has lots of people giving her attention she is happy!
We were never going to get "good" news about her bladder and bowels as the nerves leading to them do not work, however it was good that there is no damage to her kidneys.
We do not have to do much at the moment, but when she is a little older we will obviously have to look at how to manage toileting. We have a really good specialist nurse and there are loads of different things & techniques out there.

In the course of discussion this nurse mentioned another couple who have a 16 year old with SB who adapted their house & thought they would be willing to chat to us, which might be great, because we have not yet spoken to anyone who has, or has a child with Spina Bifida.

I am off for the week with Summer as the house is being rewired. I am sure Nic will have it perfect by the time we return?!!!

Tuesday 13 November 2007

A medium sized chocolate bar from 100 paces...

In most of the good appointments we have had you think that's great but there is normally some little thing that's just not quite right, something insignificant but as parents its often hard not to focus on it. That was not the case today. Her eyesight is perfect, not a problem, A1, absolutely nothing negative to mention according to the nice consultant man. He thinks there may may have been a slight developmental delay which is caught up now.

I was reading this morning about how Abraham chose to believe God and it was accredited to him as Righteousness. I choose to believe this good news was as a result of the prayers of our friends and a God who loves us all.


And so to reward Summer for her perfect eyes we gave her some chocolate......


Monday 12 November 2007

Eyes, kidneys & RasberrieS

This week is one full of appoitnments. We have Summers eye apointment tomorrow morning which we really hope will just be a formality, she can certainly see a milk bottle and me from across the room!
On thursday we have the test on her bladder, this will indicate what kind of treatment she will need to protect her kidneys and for the longer term to help with toileting. This test is not that nice, so will be a bit stressful ( not as much as the brain surgery though!).

Summer is doing well herself. Enjoying the introduction of food, have yet to find something she does not like. she is also beginning to babble a little and blow rasberries. We obviously find this completely mesmerising, who needs a TV when you have a baby?

We will update after the appointments.

Kathy

Saturday 3 November 2007

Thursday 1 November 2007

Back Online

After a frustrating wait we are finally back on line and able to be part of the world again. How did life happen without the Internet??

So whats been happening over the last month. We moved house for one. We now have an extra couple of rooms and a garden which we love. Our previous house had like a box out the back which Kathy did brilliant with but it wasn't really part of the house if you know what I mean. We now have loads of DIY to do, a complete rewire happening in a few weeks ad then endless stripping of that annoying wood chip wall paper.

Summer has been doing so well. We were thinking back over what we went through in May and before and how we had no idea what was going to happen. What we would have given to know we would have such a beautiful happy girl. She really is amazing.

The week after next we have 2 important appointment. firstly her eye appointment. We were worried about her eyesight a few months back so we got the referral which has finally come through. She seems fine now so we hope it will be a quick exam and then out again. After that she has a bladder test which will show how good that it. Its quite an intrusive test but I'm sure she wont mind. Please pray for both of these specially the bladder test, it will be very revealing for us on whether she will need surgery soon or not.

Apologies to everyone i haven't emailed for a while, I will try to catch up soon.

Nic