Bittersweet

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

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!

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

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

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

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

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!

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

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!

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!

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!

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

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!!

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

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

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

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

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

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

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

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

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

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!

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!

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!

I spent about 45 minutes yesterday on the phone to a lovely lady who has 3 children, her youngest is a gorgeous ( seen a picture), shoe obsessed teenager, oh and she happens to have spina bifida.
Talking to her mum, Summer sounds very similar functionally to what she was like when she was small.
This is the first time I have spoken to anyone else who has experience of SB and it was so positive. This girl uses a wheelchair, but is totally independent, is studying, playing tennis, driving, staying out too late and being a normal teenager... yes there are hard things too, but it was really encouraging.

Thankfully we have a few year to save up to pay for driving lessons, which by then will probably be £80 an hour!

Summers still practicing sitting and finger food, she likes broccolli, but such a mess!

Woodpeckers,Sitting & Trouser.

On saturday Nic looked out the window to see a large bird on the lawn which turned out to be a woodpecker, which is very exciting as at the old house all the wildlife we had in the garden was cats mess, the neighbours football and sparrows ( not that I am knocking sparrows, I know that God cares for each of them).



It was an exciting weekend as Summer has started sitting up on her own, obviously all a bit wobbly, but great to see as she has done it on time, clever girl. She seems very proud of herself.



I have had great fun this week, a friend came to visit and suggested a trip to the Monsoon sales for Summer, so I reluctantly went along, and brought her some trousers and she has been given some to. Very exciting to see her in her first pair. I can see shopping trips being high on things we do!

An Unexpected Twist....

During the arthrogram yesterday the surgeon did not find what he was expecting. Instead of a dislocated and rather poorly formed ball and socket they found that it was surprisingly well formed and stable after all. Summers problem seems to be associated with a lack of twist in the femur caused by poor muscle control during her development. This is all great news as instead of having to do complicated things around the joint all they need to do is cut to rotate the lower part of the femur to bring it into the correct alignment. They want to wait until late 2008 to do this next op so we can have a great start to the year without all the things to cope with we were expecting.

This all means that Summer and Kathy were back home yesterday afternoon and we were all able to celebrate at a great New Years Party with friends! No brace, no changes, just our beautiful daughter smiling away as ever!!

Our surgeon seems to be enjoying the challenge of Summer He has never seen anything like this before and she is in his top two of his interesting patients. This twist is measured to be at 110degrees. He has never seen or heard of this this greater than 70 degrees before so was certainly surprised that things are as they are.

As a separate issue there seems to be something else rather remarkable happening in her hip which also hasn't been seen by our surgeon before. Summer has much better control of the hip muscles on the inside of the joint than the outside due to the spinal defect. This is a problem as it is the outside muscles which are more useful in mobility and hip control than these inside ones. Due to the rotation of the femur the muscle which works well may now be on the outside of the hip giving her the movement and control where there previously wouldn't have been any.

He will check this idea out some more as he was thinking on his feet a bit talking to us but what an amazing scenario if it’s right. The relocation of this muscle from the inside to the outside is something he has done before surgically but in Summer’s case it seems that it is happening all by itself!! I will update if this theory is correct.

So we are starting the new year in a much better place than we expected. May it continue through out the year. If its anything like last year its going to be exciting for sure!!

Thanks to everyone who is praying for Summer, no doubt God is at work in her life and those around her who all, especially us, seem to growing though this beautiful little girl. Take a look back to the first entry on this blog to remind yourself of how it all started, remarkable really.

Happy new Year...