We had a chance today to meet with the orthopaedic consultant who will probably follow Summer until she is 18. It was a chance to find out a little more about how the damage to her spine may affect her functionally. We always knew that she would have problems with her feet, bladder & bowels, but it seems that she will also have problems with her hips which was a bit more of a shock. I do not want to say what she will or will not be able to, as that depends so much on what Summer wants to do. It does seem that she will be a wheelchair user, but hopefully quite independent with that.
Are we disappointed? Yes… Does it change how much we love our little girl? No.
Tuesday, 31 July 2007
Thursday, 26 July 2007
Another photo!
Its been a bit of a hard week, the appointment about her hips did not go as well as I thought it would, and it may be that the brace will not work. We have an appointment with the ortheopedic consultant in Leicester next week to chat through Summer and discuss things related to her lower limbs and prognosis.
My Mum and Dad have been up for a few days and we took this photo yesterday. She is still very cute!
My Mum and Dad have been up for a few days and we took this photo yesterday. She is still very cute!
Friday, 20 July 2007
Sleeping by Washing machines!
We are home....yet again. Her Sodium seems to be ok, We are having another test tomorrow just to check. So we are trying to settle again into some kind of routine. I think Summer quite likes hospitals and the noises, so has been a little fretful here. She is currently sitting next to the washing machine in the hope that she will want to sleep for a little bit.
What an emotional roller coaster we are on, had lost all sense of normalilty, untill I realised that there is still the bathroom to be cleaned and washing to do!
There is a sense of where is God in all of this? but I was reading the Message, which is a version of the bible that is really easy to read. A bit in ephesians 4.
This IS the road we have been called to travel on, and any sorrow I have for us and Summer, does not lead anywhere.
There is another bit just before this verse and it says
What an emotional roller coaster we are on, had lost all sense of normalilty, untill I realised that there is still the bathroom to be cleaned and washing to do!
There is a sense of where is God in all of this? but I was reading the Message, which is a version of the bible that is really easy to read. A bit in ephesians 4.
"I want you to get out there and walk, better still run on the road God called you to travel. I do not want you sitting around on your hands. I do not want anyone strolling off, down some path that leads nowhere"
This IS the road we have been called to travel on, and any sorrow I have for us and Summer, does not lead anywhere.
There is another bit just before this verse and it says
" God can do anything you know - far more than you could ever imagine or guess or request in your wildest dreams"
Isn't that great!
Monday, 16 July 2007
How best to spend 99p
I've calmed down a bit now. Needed to let off some steam and glad I did. That's the point of this blog to say how we are feeling, to record it all for the time Summer can read it her self and understand.
Her sodium levels are still low but they are on their way up slowly. She has to drink a salt solution 3 times a day which she hates, just as we would if asked to drink some salted water!
Still no sign of her coming home but she seems much happier and has some colour back. She is also coping well with a vastly reduced diet, less than half her previous amount, all thanks to the best 99p we have ever spent.....a dummy!!! (or pacifier to you Yanks)
Her sodium levels are still low but they are on their way up slowly. She has to drink a salt solution 3 times a day which she hates, just as we would if asked to drink some salted water!
Still no sign of her coming home but she seems much happier and has some colour back. She is also coping well with a vastly reduced diet, less than half her previous amount, all thanks to the best 99p we have ever spent.....a dummy!!! (or pacifier to you Yanks)
Sunday, 15 July 2007
Summers back in Hospital
Summer has been admitted to the Leicester Infirmary again after getting poorly. Yesterday she just wasn't herself. She was very grizzly, vomiting and had diarrhoea so we took her to A & E in Leicester to have her checked out. They did some blood tests and some other tests which all came back OK so at 2am we came home.
We had a call at about 9am the next morning asking us to go back in sometime after 12pm as on a second look she had a sodium deficiency. So we casually went in after a nice lunch with friends to find out her sodium levels were very low, and this was indicated by the previous nights results. They were re checked by the registrar the following day who found the error. We were both a little mad about that mistake as you would imagine but the next error really got to me.
Apparently the reason for this sodium deficiency is due to over feeding. Since she started on a bottle at 2 weeks old we have been telling all the doctors and nurses how she was eating a lot and we were always told you cannot over feed a baby. I even had one of the doctors light heatedly repeat to a worrying Kathy 3 times - "You cannot overfeed a baby". How wrong I was. I have to say that I got mad, not with anyone in particular but it was just such a devastating thing to hear after everything.
So tonight Summer is poorly in hospital with Kathy. She ate her full days feed by 2pm today so they will not feed her till 5am tomorrow except for a little if she is desperate. And from then she is now to eat below her recommend daily amount to try and build up her sodium levels again slowly. She will be in for a few days now until she is back to her old self.
We are angry this has happened and disappointed that she is ill again. All the prayer she has had and then his happens. Why? What is all this for? How is this "prospering us" as we are promised. Please pray for Summer that she will get and that we well see some real benefit coming from all this. I think we need that right now.
We had a call at about 9am the next morning asking us to go back in sometime after 12pm as on a second look she had a sodium deficiency. So we casually went in after a nice lunch with friends to find out her sodium levels were very low, and this was indicated by the previous nights results. They were re checked by the registrar the following day who found the error. We were both a little mad about that mistake as you would imagine but the next error really got to me.
Apparently the reason for this sodium deficiency is due to over feeding. Since she started on a bottle at 2 weeks old we have been telling all the doctors and nurses how she was eating a lot and we were always told you cannot over feed a baby. I even had one of the doctors light heatedly repeat to a worrying Kathy 3 times - "You cannot overfeed a baby". How wrong I was. I have to say that I got mad, not with anyone in particular but it was just such a devastating thing to hear after everything.
So tonight Summer is poorly in hospital with Kathy. She ate her full days feed by 2pm today so they will not feed her till 5am tomorrow except for a little if she is desperate. And from then she is now to eat below her recommend daily amount to try and build up her sodium levels again slowly. She will be in for a few days now until she is back to her old self.
We are angry this has happened and disappointed that she is ill again. All the prayer she has had and then his happens. Why? What is all this for? How is this "prospering us" as we are promised. Please pray for Summer that she will get and that we well see some real benefit coming from all this. I think we need that right now.
Friday, 13 July 2007
Thursday, 12 July 2007
Update
We thought Summer would be home yesterday or today bu she is still at Queens in Nottingham. for the last 24hours or so she has been running a temperature which is causing us all some concern.
The doctors are obviously concerned about meningitis, an infection caught from the operation. Another possibility I was told about was there there may be some bleeding in the brain which incredibly so is not so serious but can cause just a high temperature when she is otherwise OK. I may have misunderstood that as it doesn't sound right. if they are still concerned tomorrow they may give her a lumber puncture which i think is where they inject antibiotics straight into the spinal cord. Any of you doctor types reading can correct me if I'm wrong on that. We would rather that didn't happen as it will knock her for 6 for a while I'm sure. She is in the best place possible however have regular obs every 4 hours so we are confident she will be OK.
The doctors are obviously concerned about meningitis, an infection caught from the operation. Another possibility I was told about was there there may be some bleeding in the brain which incredibly so is not so serious but can cause just a high temperature when she is otherwise OK. I may have misunderstood that as it doesn't sound right. if they are still concerned tomorrow they may give her a lumber puncture which i think is where they inject antibiotics straight into the spinal cord. Any of you doctor types reading can correct me if I'm wrong on that. We would rather that didn't happen as it will knock her for 6 for a while I'm sure. She is in the best place possible however have regular obs every 4 hours so we are confident she will be OK.
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