Another MRi scan

I made my return to Nottingham hospital today. Recently Kathy has been going to the hospital without me while I work but today I wanted to go as well. We were to meet with the Neurological Registrar to talk about an apparent recent decline in in Summers health. The last 2 days things have got better but she has been tired and staring a lot into thin air. Both signs of hydrocephalus, water on the brain.

They are a little concerned also, enough to have her booked into have another MRI scan on Monday to have a good look inside her head with a view to possible surgery the following Tuesday although this is unlikely.

They also want to take a sample of this fluid which they get by sticking a needle through her soft spots!! I wont be able to watch that happen.

We also met with the orthopedic consultant about her hips. They are doing really well and are now seated nicely in their sockets. We can now move this line of treatment to Leicester to cut down on some travel time! We think the brace will be on for at least another 4 weeks full time. They will not fit it part time after that as we had previously been told which is good, that would have been a lot of work fitting and removing that each day.

Never forget.... We were first!!

I haven't written anything for a while. Things have been pretty normal I guess and it feels like there is less to talk about than when we are in the thick of it. Its strange to say, but during those times all we can do is depend on God and the comfort that gives us is amazing. When things are not so hectic I guess I start to do things on my own again and i forget the comfort it gives me to share whats happening. This post is no different.

Each week we have the health visitor come and measure Summers head circumference to watch for hydrocephalus developing. It is not looking hopeful so far. She is still OK but it is heading in a bad direction. We are aware she may be back in hospital in a couple of weeks for a shunt to be fitted, another operation. The doctors will say to us at the hospital, "We told you this was likely" or something like that and they did but it makes it no easier now I can assure you.

So I am back on my knees. We have seen her healed before, the meningitis didn't develop even though she looked so ill, the defect is low on her spine and it is healing well, the ventricles in her head stayed low during the pregnancy and the amazing growth spurt she had in her last week before being born. All just amazing provision of an amazing God.

We pray now that next week her head will not have grown more than is normal, that she will not need more surgery and I anticipate that God will provide abundantly for us as always.

I had some other disturbing news tonight. A baby has been born on Eastenders and they have named her 'Summer'. Never forget.... We were first!!

This is taken while I'm wring this, what a cutie.

Prayer blankets and teeth!

A quick entry as Summer is shouting at me from upstairs. Well we have almost made a week on our own. This week we had no hospital appointments, which was bliss. The following two weeks we have quite a few. I have had some moments this week that have been really hard, but again friends and family have known when to say the right thing and there have been some great comments on the blog. I also received a beautiful blanket in the post. The note that accompanied it said that they had prayed while knitting, so when I cover Summer with it, we also cover her with prayers and Love.


The brace for her hips has been on for a week. We go back next week to see if it is working. She does look quite funny, but very cute.

Summer has a little friend called Sam age three, who loves to give her kisses, but is confused as to why she has no teeth. He thinks I left them at home!
Love Kathy
Kathy

A new freind of ours just sent us this article. Where I lack words to explain things this takes over brilliantly.

"Welcome to Holland"
Raising A Child With a DisabilityWritten by Emily Perl Kingsley, 1987.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum, The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?," you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.

"But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around...and you begin to notice that Holland has windmills...and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned.

"And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very, very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.

Back to work

It was my first day alone with Summer today, as Nic finally had to go back to work after five weeks of. I think he found it quite hard. Summer at the moment is such a good baby, she sleeps loads and wakes for food, has a look around and then sleeps again! I am sure this will change, but its nice at the moment.

If I am honest I am finding it all quite hard, I know every new mum probably feels anxious and worried for their child and I try and remember that, but being out and seeing other children is hard, what is the future for Summer, how can I as her mum try and protect her from the hard things that may happen? The answer is that I cannot and all it does is cause me anxiety. What I have to remember and constantly remind myself is that she is in Gods hands and they are much safer than mine.

“ Cast all your anxieties on him because he cares for you” 1 Peter 5

The cutest baby in the world!!!

Todays appointments went well. All the stiches are out and her back is healing nicely. We will be back in the hospital on Thursday now hopefully to have the hip brace fitted.

Some normality or routine seems to be returning now. Of course I am soon going to have to face the reality of returning to work after 5 weeks off. I'm sure I could do with just one more week?

Summers at Home.... Take 2

Again and also sooner than expected Summer has been discharged from the Leicester Infirmary. All her cultures came back negative to meningitis so they have stopped the antibiotics and said she is free to go home. Especially good for me as it was my turn next to do the hospital night shift!


On Wednesday night we gathered people around us and prayed that there was no meningitis. An now there isn't. We do not know what had caused her to be so ill but thankfully it was only for a short time. Next week we have 3 hospital appointments in Nottingham. For those that don't know the area Nottingham is about an hours drive away compared to the 3 minutes of the Leicester hospital. We will be starting our treatment there and then hopefully transferring what we can back to the more convenient hospital. She is having the frog brace fitted to fix her hips on the Thursday so there will be lots of screaming that day!!

A lot of people have been asking about the Hydrocephalus. This was such a big issue during the pregnancy but now hardly talked about. This has confused us as well but what they are doing is each week measuring the circumference of her head and if this increases faster than normal they may then act by fitting a shunt. We had an ultrasound on her head 2 days ago which seemed to show no change from before he operation which is great. Please pray this continues to not be an issue for us. We are told that shunts, while effective in their purpose can cause a lot of additional complications we would rather avoid.

Thank you all again for thinking and praying for us.

Summers Getting Better

Both Me and Kathy are at home together for a full nights sleep together for the first time in over 2 weeks! And possibly the next 18 years! Our very good friend has is kindly spending the night at the hospital for us. Summer has had a good day and seems nearly back to her old self. Of course we've only known her 2 weeks but so quickly we got to know what she does and when enough to know something was seriously wrong 2 nights ago. I just remember how during her examination at the Royal she was completely non responsive to all the needles, poking, even the removal of a very large dressing from her back. An event that normally cracks windows!

But now Summer seems OK. She is on a 5 day course of antibiotics still and will probably be in hospital for the duration. We are so relieved. Once again our prayers for her to not have meningitis and be healed have been answered. Praise God for that!! Hopefully next week we will be able to keep to our appointments in Nottingham to put her recovery back on track. On Thursday she is to have a frog brace fitted to put her hips where they should be. She wont mind the embarrassment of resembling a frog and I'm sure her parents will get over it soon enough!!