A Different Life

Happy New Year!

2011-01-02T20:46:00.005Z

2011 all ready and we have just returned from a lovely new year in the borders with friends, one of whom reminded me to write on the blog, so here I am!
I have just realised we started this blog in Jan 2007 just after we had our scan and found out the news about Summer. Four years and another child later, I do not think I could have imagined how good life (and God) are to us.

Summer never fails to amaze me with how well she is doing. 2011 is the year she will start school, something she is very excitied about. I have spoken to the school we hope she will attend, it has a lovely attitude. She feels too young, but she keeps reminding me that she is allowed to grow up!

She is walking a little more with her splints and frame and she is a complete whizz in her wheelchair. We are about to look at getting a new chair. The NHS one on offer is rubbish, she can barely move it, so we will buy her one, finally using some money some lovely friends raised for us by running very long distances.

Another answer to prayer is that Social services have finally agreed that we do need some adaptations to the property, so we can start on them soon.

Summer and Katie are such a blessing to us, as are our friends, family and church family. Life as you can see from the photo is very normal, whatever normal is! I hope to write a little more often than every six months. Feel free to nag! Thank you for reading.

some photos and an update.

2010-08-29T20:57:00.003+01:00

Summer is doing so well, growing up so quickly. we have moved her to a big girl bed as Katie is now far to big for her cot, so needs Summer's bed.

Summer is a complete wizz in her wheelchair, it is lovely to see her so independent. Only problem with her growing up is that we need to start shopping for a new wheelchair.

Thankfully we are not awaiting any operations at the moment and have reduced our hospital visits. She is developing really well and looking forward to starting school next year.
Praise God.

Happy third birthday Summer!

2010-05-16T21:24:00.002+01:00

We have just finished celebrating Summers third birthday. She has had a party with 12 friends ( not at our house thankfully) and gone to bed full of chocolate cake and too many presents, just like any other three year old. Katie is also happily asleep hense writing this.

When we think back to the day of her birth and the few months that followed, I do not think we could have believed we would be able to have such a " normal" day as this.

I am reminded that it says that God can do much more than we can ever ask or imagine and its true.

An overdue update and prayer request.

2010-04-28T20:57:00.003+01:00

The general con census of the last post is that there are some really faithful blog watchers out there, so I would love to give people an update.

Summer is now almost three...How did that happen? Katie is 15 months and walking about, which still amazes me.
Summer has moved nursery, as we needed a one to one worker, but this was not available where she was. This has been a really positive move and she is a lot more outgoing, has made some friends and its really close to home.

She has had quite a few urine infections recently which does seem to be an on going problem. Summer can now say Trimethroprine though!

Physically she has done a lot of developing this past year. She has her wheelchair which we mainly use outside and on Sundays, she is pretty skilled in using it.

Walking/standing has not been going quite as well. We are blessed with a great physiotherapist who is trying a number of things with Summer. We have looked at increasing the level of splinting, because her Right leg in particular is able to do very little in standing. I have found the last 6 months quite frustrating as we started quite well with the walking, but have had to go back to a standing frame and it feels like we are going backwards at times. Saying that, we tried her new splints and walked outside today and she did really well.

The other main news, and the main prayer point relates to her Surgeon looking at the possibility of surgery to try and stabilise her hips. Its quite major surgery involving muscle transfers and things and it is not very clear whether it will benefit her or not. If we do go ahead there are a lot of very practical implications as she will be in a full cast from waist down.

So if people could pray for real wisdom in which course of action to take and that the medical team may really guide us ( that is our physio, Orthopedic surgeon and Orthotist).

Finally we as a family are well, I will be starting a new job as an OT in a disabled childrens team, which is nearer to home and a new opportunity. Nic is well, ran the Leicester half marathon last year. We are off to camp at the France Spring Harvest site in June which we are looking forward too, oh and we have just been given a hand powered trike tonight, so Summer can try it in the morning.

If anyone is still reading this mammoth post, a big thank you for all your support and I will try and update on a monthly basis...no promises though. Kathy.

Is anyone still out there?

2010-04-20T15:56:00.002+01:00

Just a quick post as I know we have not written for ages. Does anyone still attempt to read the blog and would they like some updated info? We are at a bit of a turning point with Summer again.

Send us a comment if you can.

Thank You.

Kathy, Nic Summer and Katie

When I am Three

2009-11-06T21:32:00.003Z

I really struggle to write things on the blog at the moment, Life is just so full and I am really not a computer person.
Summer is doing really well, growing up so fast. She has been informing us of all the things she wants when she is "free", or three as I think she means.
She still has her walker, "spotty" as it is known and we try and practise with that every day. We are about to get a wheelchair assessment, so she can have another form of mobility!

We talk about a different life, but really this is our life and feels very normal to us. It has been a joy and shock at times to see how quickly Katie does things. she is all ready up and cruising along furniture getting into all kinds of mischief.

I am off to bed as my girls have not bothered with the clock change and choose to be up around 5 ish, which is just FAR to early.

2009-08-28T17:58:00.005+01:00

Happy girls
Where the chooclit
Pretty girl
There were no steps nearby so we named this field "The Naughty field"

Walking, of sorts.

2009-08-28T17:25:00.004+01:00

About 5 months ago, our new Physio then said shell be walking within 6 months. Today she actually did, a month early. Using a frame across the room and back with a little help turning. When she told us her goal I initially smiled and said "Sure" thinking maybe, but that's a huge challenge. Then about a month ago with very little progress I gave up all together with the 6 month goal, "Maybe in a year or two". After a month of good practice, a bit more motivation from Summer and a lot of effort from Kathy she did a distance with the frame all on her own. Just amazing, what a good God we have.

Of course that isn't the end of the story by any means; just a step on the way to her increased mobility. shes go to fond that walking is better than crawling for a start which will be a challenge, especially at home. Then maybe after a while crutches. A chair is still going to be needed as well. Unless God decides otherwise of course, well keep praying.

Summers bowells are a big source of frustration at the moment.She is on a dairy free diet which takes some getting used too and they still don't know the cause of the change yet. Please pray that her bowels will get alot better and easier to manage for us.

Katie's doing well, not sleeping great but manageable (by Kathy!). We are learning just how easy somethings were with Summer that we didn't appreciate at the time, for example wriggling during nappy changing!! We haven't even got to crawling, walking yet. That will certainly be different!!

Some piccies to appear soon...

Summer update

2009-06-30T08:31:00.003+01:00

I am aware I have not really written for ages about how Summer is doing, its easy to just muddle along taking everything as it comes when you are with her everyday.
So how is she? Apart from amazing, vivacious and cheeky she is doing really well. We are still working on standing with her splints and we have a little walking frame which we are trying to use, she is quite reluctant so we just keep perservering. She has a wheeled standing frame at nursery which means that she can propel herself around, which she likes to do.

We had a review about her hydrocephalus and her consultant has essentially said that she should remain fine, the operation when she was 8 weeks old worked so well. We obviously can never totally forget about it, but day to day it does not affect her.

Continance. If Summer ever reads this in the future,then sorry for discussing something so personal! We have started to try and manage her toilet needs a little more, this is going quite well but is time consuming.
In general she is developing so well, she is a joy to be around, she loves her little sister and is always happy.

Prayer requests would probably be 1) For time and energy to carry out physio to get Summer standing and hopefully walking. 2) That we would have her continance managed before she gets to school ( something that cannot be garenteed) 3) That as she has more equipment around her, people would still see Summer and not the things around her.
Most of all that we would manage to parent well, teach her about Godslove and show her and Katie how special and precious they are to us.

Happy Birthday Summer

2009-05-19T12:16:00.003+01:00

Wow, what a weekend. A friends wedding on Summers birthday and party on the sunday. We cannot believe she is two. What a journey we have been on. This past year has been fantastic, She is just grown and developed so much, with very little hospital interventions. We have just had time to be a family. When I think about where we were two years ago it is amazing.
I remember such a little scrap lying on a pillow, looking so fragile and broken and now she is a gorgeous, vivacious, cheeky two year old. So many big and little miracles have happened that I can easily forget, but God has been SO good to us.
I remember the verses that people kept giving us, and they are still precious today.

Happy birthday our darling daughter.

I praise you because I am fearfully and wonderfully made.

My frame was not hidden from you when I was made in the secret place.

your eyes saw my unformed body

All the days ordained for me were written in your book before one of them came to be.

Psalm 139

How precious to me are your thoughts O God.

Climbing Stairs

2009-04-22T12:27:00.001+01:00

Summer has just climbed her first full flight of stairs at a friends house. Hopefully she can do ours once we have carpet. What a great day.

The joys of motherhood

2009-04-21T21:39:00.002+01:00

Katie in baby bouncer hanging from door,
Not long had food.
Summer is helping Katie to bounce by pushing her head into Katies tummy
Katie is Sick all over Summers head.
Both girls looked quite pleased with the result.

Both girls had bath that evening!

Sleeping and Standing

2009-03-26T13:15:00.003Z

A few people have mentioned the lack of blog entries, so in a rare daytime moment with two girls upstairs and quiet I thought I would write.
Its been quite a hard few weeks, mainly due to lack of sleep, but both girls are doing well.

We are due for an orthopeadic appointment on monday, we have not been for six months, so it will be interesting to see what her hips are doing and what the consultant thinks. Summer has some new splints to wear inside shoes( Fifi ones for those in the know!) this means that we can practise sitting to standing a bit more which is great. It is becoming more noticable that she is on the floor when her peers are running around which is something Iam finding a bit hard, and yet I only have to go back and remember all the worries we had when she was born to know that she is developing SO well. So praise God for all the amazing things he has done, and I believe will continue to do in our lives.

I leave you with photos of Summer standing and Nic and Katie sleeping!

7 weeks old

2009-03-02T21:16:00.002Z

Oh my word, I had forgotten how much time newborns take! I am up past 9pm for the first time in weeks. Katie is doing well.... noisy, very sicky, but very cute. Summer is still enjoying being a big sister, although she does grab Katies hand and say bye quite a bit, as if Katie has out stayed her welcome.
I still get amazed by the things Katie does, she can stand and move her feet, everything a normal baby can do, yet we did not experience that with Summer. I thank God that he has blessed us with two amazing girls, I feel very privileged to have been chosen to be their mum, although it is also quite scary.
I am off to get ready for bed, which I recall is an object you normally sleep the night in...oh what a distant memory!

Does her Nose beep?

2009-01-27T15:54:00.002Z

In our household, noses "beep". Summer is just checking out Katies nose to see if it works!

3.30 am!

2009-01-26T18:14:00.003Z

3.30 AM, cue both girls up, unimpressed parents, unhappy Summer & Katie, its just as well they are cute.
Not a great start to Nics First day back at work. Katie finally put on a little bit of weight which is a relief, jaundice seems to be improving.

I am dreaming of the day when I can have a big glass of wine.......and more than a few hours sleep

Being a big sister.

2009-01-20T08:45:00.002Z

Baby!, shouts Summer excitedly. She seems to have adjusted very well to another little person in the house. I got home from hospital a day earlier than expected which was great. We have had lots of visitors including excited grandparents which has made summer very happy, she loves people.

Katie is doing well, she is a little jaundiced which we are having checked out at the hospital. She is currently blissfully asleep looking very cute.

No new photos, sorry you will have to wait for Nic to do an entry, I still have baby brain and it seems far to complicated to do!

Katie Eve is Here!!!!

2009-01-12T20:13:00.005Z

She has arrived, 7lb 10oz, brown hair, green eyes, perfect...

The day has gone so smoothly, no problems delays hitches at all. If ever there was something to be thankful to God for its days like today.

One days to go

2009-01-11T09:22:00.002Z

This time tomorrow....................will be amazing. I was reminded of that first cuddle, first smell, first look of a brand new baby. I cant wait!!

I hope this little one is prepared for the amount of cuddles and kisses that are coming her way from a very happy older sister!

Photos will appear shortly....

Three days to go!

2009-01-08T14:27:00.002Z

Yes, we have three days to go before the three of us becomes four. Summer is constantly talking about babies, although she seems to think that everyone has one in their tummy including herself and her daddy! I am not sure how she will cope with the reality of the baby actually living here though.

I am writing this whilst Summer has her nap, she is trying to stop doing this, whilst I am trying to con tinue them for as long as possible. Summer won yesterday, but I won today!

Opps, spoke to soon. Hopefully Nic will update this next week with pictures of the newest Allen

Untill then.

Bittersweet

2008-12-17T14:51:00.004Z

Seven days to Christmas and about four weeks until the three of us become four. We have not panicked about Christmas at all this year, we are too busy panicking about our soon to be expanded family. Carpet has finally been laid in the bedrooms, Summer crawled over it and shouted in delight, poor depraved child!

I have been wanting to write about the bittersweet emotions that seem to catch up with me, but its hard to put down in words. Every scan we have been for indicates that this baby is perfectly fine, something worth rejoicing for and yet it does tug at me that this is what scans for Summer should have been like. I feel this baby kick and I know I will be able to kiss its feet and they will move. I watch summer sitting and dancing to music and see how much she loves it and again it tugs at your heart to know that ballet classes are not going to be where I will be sending her.

I know that these things are so small though. We have so many things to be thankful for and so many things Summer has already achieved and will do in the future. We eagerly await this new ones arrival (although not before the New Year thank you very much!)

Trust in the lord with all your heart,
do not lean on your own understanding,
acknowledge him in all that you do
and he will give you straight paths

Meeting Eli

2008-11-26T19:59:00.002Z

I have been waiting to write on the blog as I wanted to upload some photos, but never seem to get them time.
Summer seems to be over the infections etc, although we have brought forward an appointment for Nottingham just to be on the safe side.
We went to Newcastle last weekend to stay with a good friend and to meet Eli and his mum and dad. Eli has Spina Bifida as well, he is a very cute 13 week old and God is doing amazing things with him as well. It was lovely to meet the family. There are not that many children out there with this condition, so it is good to have contacts.
Its not long until baby two arrives, I am finding carrying Summer a bit of an issue at present due to my ever expanding size. We are not ready, but are you ever?
Summer is growing up, getting lots of words and making her wishes known. Slightly confusingly she uses the word "up" if she wants to go up and down, so we have to guess which it is!

Will try and put picture of Summer and Eli on soon.

THE END OF A LONG WEEK!

2008-11-02T19:54:00.003Z

Summer is tucked up fast asleep in bed, no temperature and seems to be back to her normal self, which is great.
We spent the week in and out of hospital mainly trying to get the right antibiotic to treat her infection. She also has managed to get a nasty cold which I now have and Nic had a stomach bug...! So we are a little tired, but life returning back to normal.

One positive of this week is that we are now plug free! ( thats a dummy, or pacifier to normal folk) We are having a few broken nights, but it seems to have worked.

Summer and I are off to see some friends in Newcastle in a few weeks including a little baby who also has Spina Bifida. His mum has just told be he has started to smile, which is so exciting, it reminded me of just how far we have come. I remember praying so hard for Summer to smile and God answered that and so much more than we could ever have imagined.

Prayer request

2008-10-28T13:16:00.002Z

We have had a slightly hospital based weekend and week. We rushed summer into A&E on friday night as she was being really sick and then very lethargic. Once again cannot fault the NHS on its emergancy care for kids.
After staying a night it seems like she still has a urine infection that has not been cleared up despite lots of antibiotics, so at the moment she is back at home with us on yet another one with a high temperature. I have to take her back to the hospital tomorrow.
So request is firstly that Summer will take her medicine( i have tried putting it in yogurt, but she knows!) as if she does not they will have to give them through her veins.
Secondly that it would not indicate a more serious problem with her bladder and kidney functions.

Thank you.

Gifts from God

2008-10-18T07:21:00.003+01:00

I have a second to reflect this morning as Summer got up too early and has gone back to bed ( for how long I do not know).
I have been happily plodding through the week, giving little thought to the things that have been provided the last few weeks, some seem really small, but all I believe are answers to prayer.

1) Summers Physio. We are getting a new one in Jan and I am getting weekly sessions for a while, both of which I really wanted but did not think we would get!
2)Our Drs surgery which we had some issues with including access has now got sliding doors and the really nice christian docter has returned to work.
3) We really needed a new car to fit a double buggy in but could not really afford to replace ours. At church one was advertised which should be perfect for us!
4) With the car, we now have an off road double buggy, which is HUGE, but should make pushing Summer when she is bigger so much easier.

All little things, i know, but all of them we had prayed about and have been provided.

"Ask and you shall recieve"

Summer in Greece

2008-10-01T23:10:00.004+01:00

We have returned from a fantastic week on the island of Paxos. Great location, weather and food. Summer had a fantastic time in the sea, learning to throw pebbles and expanding her volcabulary, Ello being the latest word, I am hoping to change this to Hello, but I might have to work hard at this.

This holiday was timed very well, the island is really steep and Nic carried Summer in a back pack, whilst I waddled up the hills. I cannot see us going back there in the near future, as friendly as it was, the north pole is probably more wheelchair accessable! I am really greatful that we got to go when we did.

Throwing stones with Daddy

Its Another Girl

2008-09-12T19:11:00.004+01:00

At least that's what we are told. Its easier to be sure when it is a boy of course.

This morning was our final detailed scan for baby number 2 and everything is absolutely normal. they were measuring away, what seemed like random bits of grey on a screen apparently represent crucial signs of life and well being. I just have to let them get on with it and resist the urge to ask a question every 2 seconds about just what we are meant to be looking at. No wonder it takes doctors so long to train if they have to learn how to interpret those pictures!

And it will be a girl, a baby sis for Summer. We are about to buy a new vacuum cleaner. We are now going for the regular Henry and not the Hetty as previously intended. I cant be the only boy in this house!

It is not lost on us that this was the same scan which 18 months ago had a much bigger impact on us. So what is the result of that impact? Firstly we have a daughter that each time we look at her we are giddy that we are the ones who get to be her parents. And secondly, we know we have a good God who can do miracles in our lives if we let him.

Our Pretty Little Fairy!

2008-09-07T22:35:00.004+01:00

I just couldn't help posting this photo, she is just too gorgeous for words!!

Summers doing great, Kathy's getting bigger, and, probably not so good, I'm getting bigger too!!

Important scan this week, the detailed one. Will update after that in more detail.

Commings and Goings

2008-08-03T21:15:00.002+01:00

Well the chickens have gone, seems they didn't last long here. We did enjoy the eggs a lot but there was just too much poo in the garden. We were able to give them away to fiends which was nice and got a lot of the initial money back thanks to eBay!

That's the goings now the coming. Kathy's Pregnant again, yippee. Due date is sometime in January, Kathy would know the exact date. We are of course over the moon but not surprisingly a little apprehensive. We have been put back under our previous antenatal consultant, a really lovely lady who was a blessing the first time and is already again now, and have completed several scans already to see if there are any 'abnormalities'.

Prior to Kathy getting pregnant again we had been genetically screened to assess he probability of another problem like Summers. The result is that yes there is a higher risk but its still less than 1% especially with the Folic acid extras Kathy's taken. (She particularly enjoyed the slight slimming side effects these gave not that she needed it!!)

So we have 1 scan left in 4 weeks and every things seems fine so far. The last scan was particularly good as we took Summer with us. It was great to see the consultant see her for the first time (except for Day 1). Summer was smiling and blowing kisses, doing all her tricks right on que!

As for Summer she is doing great. getting stronger and cleverer every day. so much more than we had hoped for. I was reading something a week ago about another family in a similar position. They summed it up very well. "We would never have chosen this path but knowing what we know now about God we would never change it"

Lets hear it for God and consultants...No they are not the same thing!

2008-07-11T20:23:00.003+01:00

Well since the last entry we have been back to see our orthopaedic consultant in clinic ( running over an hour late) and I had been hoping and praying that we would not have to choose between the two opinions....and praise God we didnt.
We walked in and he said "hello gorgeous", sadly not to me! He then sat down, smiled and said " well we do nothing, she is doing really well". So amazing. this was the guy who had her on the operating table in January prepared to do a huge op.

I do think that God has answered our prayers and that he has also given us a consultant that we can trust, which is so important.

On a completely different, but almost just as serious note...the chickens have to go, there is just to much poo, so anybody interested let us know, they give very nice eggs!

No two consultants think alike!

2008-07-06T22:11:00.002+01:00

I cannot believe it has been so long since we wrote on the blog, its the 6th of July already ( HAPPY BIRTHDAY DAD).

This going back to work thing is hard, I just collapse in the evening and then it is time to get up again. I am enjoying work, its a little scary because I have to use by brain and remember to talk " grown up" but it is nice for a change.

We went to Nottingham last thursday to see Summers Urologist and to see an Orthopaedic consultant for a second opinion. We went with the blessing of our consultant in Leicester, we just wanted another opinion because Summer does seem to be quite complicated in the bone department.
If I am honest I thought he would confirm what our consultant had told us about his plans for treatment, but it turns out he thinks very differently. Our consultant wants to carry out an operation on her legs, where as this Nottingham consultant feels that it would probably not make much difference functionally to Summer, therefore just leave her alone.
Wow.. I have no idea what to do. We are seeing our consultant tomorrow and hopefully the two of them have manged to talk and I am just praying that the right course of action will be really evident to us all.

Summer is doing really well, no more words, but she is now crawling, almost properly which is great. Will keep you posted on outcome of the meeting.

Oh no, I have created a monster!

2008-06-21T08:41:00.003+01:00

It is true what they say, that you should not let your children watch TV. Summer up until now has not been fussed by the box, but she caught sight of Teletubbies and is hooked, but worse than that, her new word for everything is.....eh oh.
Such a proud moment to know that your childs first recognisable sound is that uttered by four rather strange looking creatures

Summer is doing well. we have a few appointments coming up at the beginning of July with Orthopaedics. This is to take more Xrays of her legs and to see if and when they need to do an operation. Our consultant did say it was a question of when, not if... but she is doing so well, trying to get herself round the room that We pray that things have improved.

Photos

2008-06-09T21:23:00.004+01:00

I have just got some photos back from the marathon and Summers birthday and thought I would share some, just because I can! Top photo is Nat and summer before the race.

Well done Nat!!

2008-05-30T21:17:00.003+01:00

Well the little party wasn't so little. We had almost 80 people through the house during the day which was great. After about 1/2 hour it became obvious that we were no going to be able to cope alone so people started making their own drink, washing up, serving each other. It was a really good time.

And now of course we are the proud parents of a 1 year old, and nearly a toddler. Summer has this last week started to do a sort of crawl. If properly motivated for the plug mainly) she can now get about the living room enough to put the fire place strictly out of bounds and for us to fear for the CD tray. We don't mind of course as we remember a time no so long ago when we thought she may never be able to move around. What an answer to our prayers that is and who knows where it will end; will she ever stand or walk? watch this space...

That feeds nicely to our extremely mobile friend Nat who completed the Edinburgh Marathon in a better time than expected (less the 4h30m) and thoroughly beat the sweeper. She also managed to raise a large amount of money for ASBAH (Association of Spina Bifida and Hydrocephalus) and also for Summer and any special things she is going need as she grows up.

Thank you Nat for Doing this for my family You are a very good friend of ours.

We had a lovely time in Edinburgh following her around the course although it was really quite exhausting watching all those people. We needed plenty of tea beaks to keep our energy levels up!

One unexpected highlight of the trip was surprisingly on the train back. Summer was loving being the centre of attention in the carriage with those around us and the 2 girls who were encouraging her to blow raspberry's and shout at the top of her voice. It was such a happy time seeing our daughter just lighting up the train with her personality and seemingly drawing people to her. I found my self wanting to tell everyone one what had happened to us and Summer and to let them know that she has gone through so much and is here now as a beautiful girl.

This wasn't to say look at us and feel sorry for us, not at all. But to say look what God can do, see how things can change and be so much better then at first they appear. We pray that God will use Summers story to demonstrate to other family's like ours just what he can do and how he can turn situations in directions we never thought possible. I cant imagine what I'll be writing here in a years time, maybe summer will be typing with me, although probably not at 21.40; she will be in bed by then.

Full Production

2008-05-13T21:42:00.004+01:00

We got back from Toulouse after having a really good weekend. It was so nice to catch up with our old friends there and go back to the church we were at. Seeing people who we have never met ourselves recognise Summer from the blog was just amazing. Her story and this blog continue to surprise me on just how its touched people. I must write more!

Summer has really progressed well this last few weeks. Shes mumbling near words, recognising things eating lots and has expanding her circle of influence. I wouldn't say this was through crawling but more an excited wiggle in a single direction. Tonight she was even able to support her weight for a few seconds through her legs while leaning and having mummy there for stability only. This is all really encouraging of course as we had no idea she would even be able to sit let alone crawl and maybe stand.

Kathy had her fist day back at work yesterday. It was a trail day to get her back in the swing of things. As an indicator to how good she is with Summer this one morning i have to get her ready and off to nursery (another thing she has started doing recently to prepare for Kathy working) she reached a little to far off the edge of the bed and got a bruise on her forehead. I'm told I'm not the first parent to let this happen so I'm not being too hard on myself but i did feel very guilty about it.

We have a busy weekend ahead, Its Summer's first birthday on Friday so we will be having a little party at the farm park to see the ducks etc and then on Sunday she is having her Dedication at the Church followed by another party for our Church and Friends back at ours. It should be a good weekend.

We have had some really good news last week. The city council are willing to fund equipment (at least one piece) to be kept at nursery in addition to what we get at home. We have been transporting Summers standing frame in the car for the last few times ad its not easy. The seats need to come down and its really too heavy to be moving like that. We didn't think this was going to happen as bureaucracy really hits hard on the city/county boundaries but apparently the guy making the decision was new in his post and applied a bit of common sense. We do live only 5m from the boundary after all! Summers Nursery is in the same building as our church, it has great accessibility, OFSTED reports and we know a lot of the staff/children/parents there. If this hadn't worked out we may have been forced to move her to somewhere else which would have been very hard.

Today was a rather momentous day. We finally got up to full production with 3 eggs. If they keep going like this they will pay for them selves in about 80years. I will have to use them for a big birthday cake tomorrow.

Toulouse, Nurseries and Frustrating systems

2008-04-25T14:19:00.002+01:00

We are off to toulouse for the weekend tomorrow. We are leaving gatwick at 6.30am, so we will be getting up at about 3am to get there, hopefully Summer will go back to sleep in the car and we will pray that who ever is driving (probably Nic) wil not fall asleep.

We are off to visit friends that we made whilst living out there. we are staying with some American missionaries who lead a french church over there and have been praying for Summer loads and my friend and her new baby girl. Its Summers first trip abroad so should be fun. I have forgotten all my french except how to order wine and steak...the important things in life!

When we get back Summer is starting a few days at nursery ready for me to go back to work. I am so not ready to leave her for a while day, at least I know she will love it.
She is going to the nursery which uses our church building, we loved it because we know the place, the staff seem great and most importantly it has a huge hall and is completely accessable, so Summer could be in a wheelchair if she needed to be. we really think this is the right place for her, but we have problems with funding for equipment as we live in the city boundry (just) and the nursery is in the county, its SO frustrating, but I am trying to give it back to God knowing that if it is right things will work out. It may be that some of the money Nat raises could go towards the equipment. The only thing we can do is pray.

"Trust in the lord with all your heart and lean not on your own understanding"

Prov 3v5

Edinbrugh Marathon 2008

2008-04-21T14:12:00.004+01:00

Our Fantastic (and possibly sightly crazy) friend Nat is running the Edinburgh marathon on Sunday 25th May. She is doing this to raise money for Summer and ASBHA the Spina Bifida charity. She really wanted to run it just for Summer, but we felt it would be good if some of the money raised could go to ASBHA as well.

I do feel slightly strange writing this and asking people to sponsor her, because it feels a little cheeky what with Summer being our daughter, but it is for a good cause and I think we will be using ASBHA lots in the future for support.

I personally think that anyone prepared to run 26 miles by choice is worth sponsoring.

You can find our more about how to give on Nat's page at http://www.justgiving.com/marathon4summer

All three of us are going up by train to cheer her on and provide chocolate cake at the finish line!

Third time lucky

2008-04-12T19:32:00.002+01:00

Yes its my third attempt to finally write something on the blog, the potatoes are ready to mash and the sausages are done, but they and my stomach will have to wait.

We have had, what feels like a crazy couple of weeks. Loads of DIY, visitors and appointments.
The appointments have actually been getting to me this week. In the last two weeks I have had 12 appointments for Summer, quite often two on one day and I just find that it feels like I have no life, Summer in general does not seem to mind to much, although she is sick of her car seat and now crys as soon as the engine starts.

We have been trying to sort out her nursery as I go back to work next month. We found one we thought was brilliant, it has loads of space, a fantastic OFSTED review, reasonable location and the staff seem really good, it is actually in the building used by our church. I discover this week that because it is in the County and we live in the city getting funding for any extra help or equipment that Summer might need is going to be difficult. I am SO frustrated with the system at present. she is going to start at this nursery and see how we get on, any prayers over this matter would be greatfully received.

Enough of the complaining. Summer is doing great, she has just had both sets of grandparents visiting which both she and they enjoyed very much. Our bathrooms getting there, we have new windows and most importantly three new additions to the family, but I will keep you guessing as they are Nic's little project.

Ok, enough, ..... I must write about my friend doing a marathon to raise money for Summer and ASBHA, the Spina bifida charity but it will have to wait as my potatoes are soggy and my sausages are burnt.

Celeriac and Smoked Salmon

2008-03-30T20:21:00.003+01:00

Summer and I have escaped Leicester for the weekend as Nic and his brother are replacing the bathroom and we thought that the less people around the better. So we are in Newcastle with my friend Nat. Those of you who have been following the blog for ages may remember we came up to stay with her the weekend after the 20 week scan.

Summer and I have had a lovely time. Nat has a dog called Poppy and Summer thinks she is very funny. |I have never seen her giggle as much.

Summer and I have been very cultured over the weekend. We had lunch at the cafe royal in Newcastle where Summer experienced celeriac soup and smoked salmon, both of which she enjoyed, she was not very lady like about it, but we are working on that!

We return tomorrow to see what the bathroom looks like and to attend Summers Physio session. She can now get herself from lying to sitting which is great...except when trying to change nappies!

Oops, a late update

2008-03-25T23:31:00.002Z

I just remembered that I haven't let you know how the orthopedics appointment went. Good is the answer. He confirmed again that Summer has a good ball and socket which is the complicated bit of the hip. The problem looks like its with the femur being twisted. Anyway hes happy as things are so we have at least another 3 months before any intervention.

He did say that Summer's hips are weird......but in a good way. Well take that as a compliment!

Back from Wales

2008-03-16T21:57:00.008Z

We got back yesterday from a very relaxing time in Wales. We have not been to South Wales before and were pleasantly surprised. Here is a couple of photos apparently showing the worst weather so far this winter according to the BBC, they seem to have got it wrong again much to our gratitude!!

We have an orthopedic appointment tomorrow, we will see what he thinks is best now after having time to think about things after the cancelled surgery last year. We have had a really quite time relatively with her hips out of a brace and much fewer appointments. This will probably mark the beginning of a new round as they decide what will be best for her.

As you can see here though she is doing just fine as she is!

Her first holiday

2008-03-07T23:00:00.005Z

Very quick blog, as it is well past my bed time, have been setting up an on line shop, not convinced it is any quicker than going and doing it for real.
We are on holiday, off to Wales for a week. We booked a cottage which looks great inside, which is important in wet and wonderful Wales, hopefully should be really good.

Summer saw her neuro consultant who did the op for the excess fluid on er brain and he is please, will see her in a years time and then only if we want him to which is great news. I took her for some casts of her feet today to make some splints so the pysio can get her standing in a frame to help her hips. The orthotist says they are the smallest ones he has ever made, I got to choose the colour, she has pink and purple buterflies, I could have had teletubies, but did not realy want them.
apologies for the spelling, I really am VERY tired. Bon nuit.

Tummy Time

2008-02-29T13:09:00.002Z

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.

Nine months already!

2008-02-18T14:22:00.007Z

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

Never leave an 8 month old with tomato soup!

2008-02-07T07:30:00.000Z

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.

Beautiful girl with a shoe obsession!

2008-01-15T09:02:00.000Z

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.

2008-01-08T07:39:00.000Z

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....

2008-01-01T10:58:00.000Z

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...

2007-12-30T21:43:00.000Z

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.

2007-12-20T09:05:00.001Z

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!

2007-12-04T10:06:00.000Z

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

2007-12-02T21:10:00.000Z

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.

Another Chapter Begins

2007-11-27T22:29:00.000Z

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!!!

Six months already.

2007-11-17T19:16:00.000Z

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?!!!

A medium sized chocolate bar from 100 paces...

2007-11-13T23:03:00.000Z

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......

Eyes, kidneys & RasberrieS

2007-11-12T19:48:00.000Z

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

Weh Hey!!!

2007-11-03T09:03:00.000Z

Back Online

2007-11-01T19:10:00.000Z

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

How did we live before the Internet?

2007-10-25T12:28:00.000+01:00

We have not managed to write for ages, as we have no internet in our new house, long saga involving overseas call centres and rubbish customer services, but will not rant about it.

After a quiet few weeks we have quite a few appointments looming. an important one happened on monday this week with her hips. It started off not well, as the ultra sound was difficulty to interpret. so the Dr said the hip was dislocated. We had an X ray and they are ok which was a relief. The right hip is still outside the normal range, but only by 2 degrees. Our consultant things we can start to look at removing the brace which is fantastic. I can also take her swimming so I have been out to get swimming things for her.

We have an eye appointment and a bladder appointment coming up. Her eyes seem so much better so we hope that that will be fine. Her renal test is a bit more of a bigger deal and will determine how her bladder is working & so how we will mange her continance in the future.

Summer is doing well, trying to sit up, staring at us when we eat, so I think food is soon going to be part of her life!

New House

2007-10-04T12:41:00.001+01:00

The move went very well and without a hitch. I'm sure it helped have Dad do our conveyanceing. Thanks Dad. The house is in much better condition than we had thought making it easy to get comfortable so we can attack it slowly, 1 room at a time.

The biggest challenge with the house is what to do about the downstairs. We do not know at the moment whether Summer will need a downstairs bedroom/bathroom so don’t want to do too much that we would have to undo in a year or two. It still feels very uncertain whether walking/transferring will be possible or just difficult for her?

We have arranged for some people in our church (Meadows Community Church, Leicester) to pray for Summer after the first Sunday meeting of every month. We will of course be hoping to see continued improvement in her development and further movement in her legs. Not to mention that the hydrocephalus stays away, which it is at the moment. When we do the physio on her legs and feet I’m always hopeful to see her toes wiggle but not yet. I will continue to look.

Moving House

2007-09-26T20:27:00.000+01:00

Well it has been a quite few weeks. Summer is doing really well, smiling lots, specially at Mummy, eating lots and sleeping lots too. every night from 7pm to 6am without fail!! How would we cope with all his and a difficult baby? Thankfully we don't have to at the moment.Anyway I'm now off work till Tuesday.

We are moving house on Friday after much wranglings. Its a bigger house with more space for Summer and us all which will be great. Its right in the middle of most of our friends which will be really great, especially for Kathy. There is a lot of work to do however, it hasn't been worked on since it was built 60 years ago with the same owners who are selling it to us!

Summer still has he brace on and with her growing legs she is getting very wide! Her head is still not growing more than it should which is brilliant. How much were we all praying for the hydrocephalus to go away and now it seems like it has. We were told that if the surgery she had works in the first few months its likely to work more permanently so the last few months are really encouraging.

Born to be Different

2007-09-14T08:22:00.000+01:00

happy in daddy's arms

I watched a program last night on channel 4 called "Born to be different". It is a series that follows a group of children born with different disabilities including a little girl with SB. I was watching expecting to be upset and yet I was not. Some of the children were more disabled than Summer, some less, but all of them were there own characters and very much loved.
I was chatting to a friend who believes that by having people on this earth who have different needs it makes us into better people.
I would do anything to change what has happened to Summer, no one wants their child to have difficulties in life, but I really believe that she will teach us & those around us how to love properly.

I also believe she really is the cutest baby in the world...but thats a mothers right!

Hip appointments

2007-09-11T08:13:00.000+01:00

I took Summer yesterday for her hip appointment.
When they scanned her, her hips had not changed position, which is good because they have not got any worse, but quite frustrating because they have not got any better & there are no answers to why. Her Right hip is now a lot more stable, which the consultants are pleased about. So it looks like she is in the brace for probably a minimum of two more month’s full time.

We are still waiting for our eye appointment, but she does seem better at turning to her right a bit better. (Especially if the TV is on!)
She has her teacher coming on Friday, so hope she is in the mood to learn.
Below is one of my favourite verses, it reminds me that someone else is in charge & they know what they are doing!

Trust god from the bottom of your heart;
Do not try & figure out everything on your own,
Listen for Gods voice in everything you do, everywhere you go;
He is the one who will keep you on track.
Proverbs 3, message version.

Hospitals & Strawberies

2007-09-06T08:57:00.001+01:00

Summer is having a slightly extended morning sleep. so I thought I would grab the opportunity to write. We ae started another round of appointments. We are off to a new hospital to add to our collection in Nottingham, urology this time this afternoon. We have another scan on monday for her hips and we are really praying that the improvements have continued. She has an OT visiting and she also has a teacher already, they do start young! I believe she is coming with a big bag of toys, so Summer should enjoy it.

It looks like our house move is going ahead in the next few weeks, which is great, but slightly scarey as the house needs loads of work doing to it, but one day I am sure we will get there.

I have mountains of strawberies in the fridge which I need to do something with, so I am off to find ideas on the internet, jam possibly....we will see!

Family Portrait

2007-09-02T23:35:00.000+01:00

The new Allen family at a friends wedding on Friday, a rare family portrait!!

Things going quietly at the moment which is nice. We have our first Urology appointment this week at Nottingham City hospital making a change from Queens. they did do an early scan to check there was no immediate problems but this will be a more thorough assessment of probable outcome. This will be the benchmark that we will see the healing against!!

The last 2 Sundays at Church I have been prompted to continue in earnest praying for Summer and us as a family. As things have quietened and become less urgent the prayer requests we have made have dropped, we need to change this. It was suggested today about having a regular time after a Sunday service, say 1st Sunday of each month where a few of us gather to pray for her and us for a few minutes. I look forward to that starting soon.

I also need to say just what a good baby she is. Its now about 2 weeks at least that she has gone to bed at 7 and woke at 6.30. This parenting stuff isn't nearly as tiring as everybody makes out!!

Summer's First Bath (aged 14 weeks)

2007-08-19T21:37:00.000+01:00

Photo as promised. Summer will kill us when she's old enough to I am sure. She just better pray we dont publish any of the other photos we have!!!

2007-08-19T21:04:00.000+01:00

Turns out people didn't like it so under duress its back to what it was until agreement is reached!!

Format change

2007-08-19T06:57:00.000+01:00

Thought I would change the template of the blog shamelessly copying other blogs I like. Much nicer I'm sure you will agree!!

More to pray about

2007-08-18T21:10:00.000+01:00

We had the appointment with the paediatrician this week. She was really happy with her development and her hips etc etc. However we now have a referral to an eye consultant. It has become clear that Summer is not looking and focusing as she should, not following quite normally. We are sure that she can see something but we just don't know how much. The best scenario is that this is merely some developmental delay and all will be fine in a few weeks. We don't like to think of any other outcome. Any eye problems would not be related to the Spina Bifida or Hydrocephalus (to the degree Summer had it) we are told, so to have this on top of everything else would be hard for us all to take.

Other than that all is fine, a few more smiles each day which is great and she sleeps so well, 7pm thought till 5am!!

Really Good News

2007-08-14T19:31:00.000+01:00

Monday had the potential to be a really bad day but it was completely the opposite. Summer head size is now returning to normal for her age showing she is absorbing the extra fluid in the 3rd ventricle really well. Well done Summer!!!

Also one of her hips is now fully relocated and back where it should be and the other is just on the cusp of being in as well. The brace will stay on for the mean time but the likely hood of need a body plaster cast are dropping. An obvious relief.

We are able to remove the brace for a short period to give her a first bath!! We cant wait as flannel washing is jut not cutting it all the time. They have changed her brace which has helped the smell a bit!!

What an answer to prayer this has been. Thank you everyone who has supported us. There will be more set backs no doubt but this is a high point celebrated well last night with a little bubbly!

Will definitely take a piccy of the first bath to upload here soon!

A holiday!

2007-08-13T10:39:00.000+01:00

We have just come back from a lovely mini holiday in Sufolk. Nics parents were away, so we used their house for a few days and caught up with John, Nics brother. Summer had her first trip to the seaside, she didnt partake in the fish & chips yet! It was so nice doing normal things.

We are famous again! Siobhon wrote a second article for Practical parenting as a follow up & it is in septembers edition. Its talks about our faith and our descision not to terminate the pregnancy. It is a good summery of how we feel about Summer which is great.

I am waiting for the Health vistor at the moment and we have a scan on Summers hips this afternoon. I am really praying that both will go well.
I leave you with a picture of us on Dunwitch Heath in suffolk, it was very beautiful.

Jabs & Ale!

2007-08-02T05:50:00.000+01:00

I took Summer to the doctors today for her first lot of Jabs. I asked Sophie (our doctor) to try puting them in the back of her thighs instead of the front, because following the last conversation with our consultant, it seemed unlikily that she could feel the back of her legs due to the spinal damage. Well, she screamed at both injections in both legs. The Dr & I felt quite mean, because we were both quite pleased that we had caused her pain!

I am off today to a farm park for a 1 year olds birthday and then to work, as my work colleauges have not met Summer yet.

I leave you with a picture of what Summer gets up to with her daddy when she is not hospital!

Bad news delivered well - part two

2007-07-31T20:47:00.000+01:00

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.

Another photo!

2007-07-26T11:35:00.000+01:00

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!

Sleeping by Washing machines!

2007-07-20T12:34:00.000+01:00

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.

"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!

How best to spend 99p

2007-07-16T21:33:00.000+01:00

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)

Summers back in Hospital

2007-07-15T22:21:00.000+01:00

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.

2007-07-13T22:52:00.000+01:00

Summers home, were going to bed. Will update tomorrow. Tired.

Update

2007-07-12T22:48:00.000+01:00

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.

Duckys' House

2007-07-10T18:59:00.000+01:00

Summer went in to theatre this morning at 8am after a night I wished I was at home and Kathy was at the Hospital! Summer would not stay asleep for more that 1/2 hour after midnight, almost like she knew there was a tricky day ahead.

We met up with her again at about 11.30am in the recovery room where she was already waking and seemingly back to her old self!! The operation went really well, they saw the fluid flowing through the new hole they had made and were able to avoid cutting into the very important artery. We are completely astounded again at Summers ability to take these things in her stride so easily seemingly indifferent the the mammoth things happening around her.

The hole they have made allows the fluid building up to move into some extra space to provide a more area for it to be absorbed so by seeing the fluid moving around they have done all that they can. What we need to wait on now is whether Summer can absorb it quick enough.

And here's the best bit: If she can, and we should know in a few weeks (we are told a 50% to 60% chance), it is likely that this will stay working for the remainder of her life. Very few have failed to work after working initially we were told. As you can imagine this is very exciting for us, all the possibilities for her life and development, as well as our own lives change if hydrocephalus is not an issue!!

So that's what we pray for now. We asked for a miracle and maybe this is it? The ability of the Surgeons and doctors involved is amazing, not to mention, as we found out today, their sense of humour. We left a little duck toy with Summer in the cot and when we saw her an assistant anesthetist, apparently not very busy, had constructed a little house on the side of her cot, "Duckys' House". You can also see the duck has had some surgery of her own!

I'm at home tonight, surprised to be back in work tomorrow. I may even be able to pick them up from the hospital to come home tomorrow, not the 4 days we were originally advised of. Are we soon to have a sense of normal again????

Another operation.

2007-07-09T20:49:00.000+01:00

Summer is having her operation tomorrow morning to try and reduce the fluid in her brain. She is the first on the list, 8am.
I am at home and Nic is staying with her this evening in Nottingham. It is good that they feel they can do this operation. There is only about a 50-60% success with it, so our prayer is that we will be in that percentage, and obviously that Summer comes through this operation well. I think we will be home after a few days and then we wait and see if it has worked.

Not sure I can say much more at the moment, Will write more when tomorow is over.

Back to Hospital

2007-07-08T21:53:00.000+01:00

This maybe our last night here together for a while. Summers going in tomorrow so they can starve her ready for surgery on Tuesday morning. I'm quite glad about that as with the nurses around there is a few extra people to help comfort her! I feel or the other families near by when Summer's lungs open up for food though. Maybe I could upload her crying here so you can all share the fun???!!!

Thanks again for all the prayers and kind words. It will be difficult handing her over for surgery again, this time we will just leave her in the ward and not outside theatre to save some tears for later.

Toast and surgery

2007-07-07T09:08:00.000+01:00

Its saturday morning, 9.00 and I have been up with Summer since 5.30. Nic is still asleep having got up in the night to her. she is currently asleep on me in her sling. I am trying to eat breakfast, but keep getting crumbs in her hair!

Nic spoke to Nottingham yesterday and the operation is planned for Tuesday. The doctor managed to calm some of our fears that increased pressure on her brain is affecting her eyesight and mood. Apparently the increase in fluid is not at a level to cause any problems. They want to do the operation before it does get to that point.

So we are back in hospital again, Summer takes it all in her stride, but it is a little harder for us. We hope and pray that the operation works and that there are no infections afterwards.

It is amazing how quickly she has changed and grown. I saw a friends new baby yesterday and she looked so much smaller. Summer has had to move into her cot because with her brace on her legs hang over the sides of the moses basket which looks very funny, I cannot wait for them to come off so I can give her a bath. Not sure whether she will love or hate it.

Wave to the camera!!

2007-07-04T17:30:00.000+01:00

Surgery Postponed

2007-07-04T17:12:00.000+01:00

Good news I guess but also I just hate waiting but the surgery has been postponed. We are now top of the waiting list and they will call us when a surgery slot becomes free. Earliest next Tuesday or Thursday.

What is great news is that Summer is eligible for the much safer surgical solution. Its called EVT and you can read about it here. Its says only about a quarter of patients are eligible for this so for once the long odds are working for us!!

"Summer Time"

2007-07-03T11:33:00.000+01:00

We got in for the scan yesterday when one of the first things they said to us was "Did they tell you you will probably be staying the night?" "No" I replied, so I am now sat on the couch writing after sleeping in trousers and a shirt. I probably smell as well but Kathy's being nice as it was me that had the pleasure of another sleepless night on Ward E39.

This MRI was a little different yesterday as they had to sedate Summer to stop her wriggling all the time and ruining the pictures. I'm not surprised they wriggle as its very loud in there. To sedate her they have to give some nasty medicine which before hand they told us was always difficult to give as it tasted so bad. most babies spit it out and cause all sorts of trouble. Of course Summer being a little different to most sucked the medicine out of the syringe before they had a chance to push it in. She will eat just about anything we are finding out!!

The MRI results showed that, as we had thought, the fluid on her brain has increased but not by a huge amount. They have decided to operate either this Thursday or the following Tuesday to relieve this pressure build up before it gets any worse.

They told us there is a choice of procedure. The obvious one was the shunt but this has alot of complications with it being a pretty major operation with a high risk of infection. The other is putting a hole somewhere which provides another path for the fluid to flow back down the spine. This is simpler and without having to put any hardware in the head the infection risk is much lower however the op is riskier and the success rate is only about 60%. Also this is not suitable for every baby depending on the location of some pretty crucial veins and artery's. We will find out today which option they are going for, We hope she will be suitable for the procedure without the shunt.

We have been getting alot of information on all this from the ASBAH (Association of Spina Bifida and Hydrocephalus) website, www.asbah.org.

I must fill you all in on my weekend adventures as well. I flew up to a good friends wedding on Saturday in Glasgow just to arrive a couple of hours before the terrorists drove into the airport. Of course my return flight was cancelled but I was lucky enough to get a lift back with the very generous Bride and Groom in their car. We drove from Glasgow all the way down to Luton, then Stanstead then back up to Leicester. I'm considering my self lucky however as I'm sure there are some still stuck there as I write!

So we will be back in hospital for about a week from this Thursday probably. Please pray that Summer will get the simpler operation and that it will be a success. And of course that her brain can grow and she can develop as well as possible. We have decided that all her mile stones instead of happening at 3 months or 5 months will all happen in "Summer Time".

Finally, it is amazing to see all the other family's there and how they cope. 1 family hasn't left since we were first there, another is on '3 weeks in, 1 week at home' cycle, another has been going there regularly for 5 years!! Yet still the ward is such a happy place to be and the staff are all great. Please pray they will continue to help so many families in a much more desperate situation than ours.

Another MRi scan

2007-06-28T20:48:00.000+01:00

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!!

2007-06-22T23:23:00.000+01:00

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!

2007-06-22T09:35:00.000+01:00

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

2007-06-14T20:52:00.000+01:00

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

2007-06-11T20:19:00.000+01:00

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!!!

2007-06-05T22:20:00.000+01:00

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

2007-06-03T22:27:00.000+01:00

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

2007-06-01T22:08:00.000+01:00

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!!

Update

2007-05-31T22:30:00.000+01:00

a quick update.

nic is spending the night with summer and Kathy is back at home. Her parents are staying. Summer is responding much more like the one we know which is good news. All prayers still very welcome. it looks like we will be in hospital about 5 days.

We will update when we can.

Summers back in Hospital

2007-05-31T05:27:00.000+01:00

Summer health has deteriorated and she has been admitted back into Leicester royal infirmary. She became very lethargic and while I initially thought it was just Daddy paranoia we decided to act and take her to A and E. She has been put on antibiotics for a minimum of 48 hours while further tests are done for meningitis. She has stabilised after being given some fluids and initial antibiotics and has recovered some of her spark! This may or may not be related to the weight loss.

Please pray for Summers health and that she does not have any infections. And also for us as a family to get through the next few days.

Also please spread the word about this change to get as many as possible praying for Summer.

Specific Prayer Request

2007-05-30T22:57:00.001+01:00

We had a visit from the health visitor today and when she measured Summer her weight had dropped from the last measurement about 4 days ago. Obviously this is not good so the health visitor is coming back tomorrow to see if she has grown in the last 24hrs before taking any further action.

This is worrying for us both so please pray again that she will grow and quickly. This has worked before when we prayed for rapid weight gain and certainly can again.

Thank you.

We are Home!!!

2007-05-25T19:26:00.000+01:00

Its hard to believe but all three of us are now sitting in our living room at home!! We were originally told Summer would need another week recovery but she has done so well they packed us off early!!

Of course we have lots of follow up appointment's, orthopedics for her hips which are dislocated due to the breach position, urology and neurology for the spina bifida issues as well as the mid wife, health visitor and pediatricians. I won't hand in the hospital parking season ticket just yet!

So tonight is our first night with our beautiful daughter altogether at home. I doubt we will sleep and I am sure we are going to be exhausted for the next 16 years....we cant wait!!

Things I have.

2007-05-21T13:55:00.000+01:00

I have the most beautiful daughter in the world.

A husband who has been my rock and is already a fantastic dad.

An amazing God

Fantastic Friends and family

Ankles the size of an elephants!

Visitors are welcome....just call first!!

2007-05-20T16:59:00.000+01:00

She’s in a bit of a routine now, cry, eat, sleep, cry, eat, sleep ... a routine many of you are aware of I’m sure.

We are of course anxious parents. Either she is crying too much or too little, sleeping too much or too little. She has a fine line to walk to keep us away from the many nurses there are around all trying to reassure us that she is fine.

We are really privileged to have so many professionals around us during this first couple of weeks. All those little questions and worries are answered long before any major panic begins to set in!! We have also had a couple of male midwives answering questions on an issue I would before have thought it impossible for a man to know so much about!!

We would love to have some visitors so if you would like to visit little Summer and parents please just give me a call on my mobile phone; 0772 7753603. Of course if it is not a good time for us we will let you know so please don’t be offended. I have to look after the family first of all!

Finally it is easy to see by looking at all the other children on the ward just how lucky we are with Summer. There are so many sad stories of pain and suffering around us that have made us realise just how much of a blessed family we are.