Tomorrow...

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.

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!

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

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

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.

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...

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

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!!!

Back Online

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

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

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

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

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

Nic

How did we live before the Internet?

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

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

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

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

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

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

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)

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!!!

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

Format change

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

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

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!

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!

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

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!

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!

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

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

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.

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

Update

We thought Summer would be home yesterday or today bu she is still at Queens in Nottingham. for the last 24hours or so she has been running a temperature which is causing us all some concern.

The doctors are obviously concerned about meningitis, an infection caught from the operation. Another possibility I was told about was there there may be some bleeding in the brain which incredibly so is not so serious but can cause just a high temperature when she is otherwise OK. I may have misunderstood that as it doesn't sound right. if they are still concerned tomorrow they may give her a lumber puncture which i think is where they inject antibiotics straight into the spinal cord. Any of you doctor types reading can correct me if I'm wrong on that. We would rather that didn't happen as it will knock her for 6 for a while I'm sure. She is in the best place possible however have regular obs every 4 hours so we are confident she will be OK.

Duckys' House

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.

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

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

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!!

Surgery Postponed

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"

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

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

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

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

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

Never forget.... We were first!!

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

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

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

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

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

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

Prayer blankets and teeth!

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

Back to work

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

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

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

The cutest baby in the world!!!

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

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

Summers at Home.... Take 2

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


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

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

Thank you all again for thinking and praying for us.

Summers Getting Better

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

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

Update

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

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

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!!!

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.

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!!

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.

Summer at 3 days old

Nic and Kathy asked us to post this photo for them. She's really beautiful. Sue and Mike.

Truly Amazing

Little Summer went in for surgery at about 9am this morning. It was one of the hardest things I have done watching her being taken away for the operation. I was so upset.

At 12.30 we were reunited with our baby. The operation went to plan, her back now has everything in its place and she was wide awake and feeding in the next 20 minutes!! Just how quickly she recovered from such an operation is truly amazing. The goal now is to keep her scar clean and to let it heal. This may take a couple of weeks.

Kathy is still recovering from the section but doing realy well. Of course she is loving every minute with her new daughter. We had a realy great nurse with us last night. She was such a help to us both and esepecially Kathy in reassuring and advising us of so many baby related things. She does not usually work our ward but was last night thankfuly. She was our own angel looking after us all through the night.

Last night before the operation I wanted to spend as much time as possible with our new baby so I spent the night holding her in the cot just the two of us. It was such a good time of bonding for us both. Not sleeping was a small price to pay but I must sleep now. here are some more photos.

Surgery Tomorrow Morning

Surgery starts at 7am tomorrow morning. Our briefing with the registrar went well but it was so sad to hear again of all her problems and difficulties. I then went back to Summer and while looking at her it all went away, we love her so much none of it matters compared to just having her in our life. She is so beautiful, just like my lovely wife.

Please pray for us all tomorrow morning, Summer especially.

Off to Nottingham

As I write Summer is in an ambulance on her way to Nottingham and Kathy is in the bath having a well deserved break. Soon I’ll be picking her up as we make our way up to Nottingham for a few days. Summer had a good night and she was moved into the lowest care nursery which is a good sign. They are going to do an MRI scan when she arrives then operate on her back maybe this afternoon or tomorrow morning. Luckily there is a bed there for both Kathy and Summer. I’m staying at my Best Mans house only a couple of miles from the hospital, very convenient!!

There have been so many kind comments and emails, thank you for each of them.

A Message from Baby Summer

Just a little message from our new baby. Isn't she just adorable!!!!

Welcome 'Summer Grace Allen'

Welcoming 'Summer Grace Allen' to the world!!


She was born today 16th May 2007 at 10.36 at Leicester Royal Infirmary weighing is a perfect 5lb and 8 oz. The exact weight for 36 weeks and rather amazing as we did the caesarean because she wasn’t growing!!


Summer has already been moved off the intensive care ward as shes breathing well and is stable. She has beautiful blonde hair. Kathy is walking around despite my protests.


I have left her for he first night with Summer to get better acquainted. I'm exhausted.

almost....

Arrived at the hospital at 8am to find there is no bed available for the little one so the caesarean has been postponed. No photo to upload as promised I’m afraid.

Our consultant decided to rescan us to give her a better idea of just how hard she needed to fight to get us a bed and we had some very surprising results; they showed the baby was growing again which was great news. A real answer to prayer.

That said the consultant doesn’t want to change plans based on this one scan so we are still having a section when they can fit us in but we will not be an emergency. To help get us a slot they have admitted Kathy to a ward to keep pressure on the neonatal managers and we should be having it tomorrow. As it is left tonight there is a little baby boy who may need a pipe inserted to help him breath which will mean he will have the next available bed but after that it is for us assuming no more emergencies come in. They had 4 last night, the reason for our delay.

So I will say it again, this time tomorrow we will be uploading a photo of the baby. Unfortunately this will not be taken with the intended camera as when I got it out at the hospital to take a pre-caesarean photo I found the lens all smashed up. After a mild panic, appreciation of just how minor an issue this was and a brief shopping trip the camera is replaced an I’m snapping happy again but now with a few extra megapixles!! Just hope this one doesn’t break as buying 2 in 2 days would be too much to cope with!!

Our God son might get his wish to have her born on his 7th birthday tomorrow. Apparently that makes them twins??!!

Indian take away and an early night

We both woke up today so happy. This is our last day before baby comes. How lucky we are to have everything so organized and arranged for us. As you can see the magazine article has brought people to us and led them to make such kind remarks. Thank you to every one or your kind words again. We chose early on not to reply to specific comments for fear that it would become a burden on us but please know they are all read by us both and all appreciated.

Last night around 20 friends from our church gathered in one of the church rooms to pray for us. We had some worship time and then they laid hands on us and prayed. I was so good to have friends and a church around that support us so much. He repeated his words on the cross to me while we were praying “It is done”. I can’t wait till tomorrow to find out what this may mean for us right now.

It’s an Indian take away tonight, not too spicy for Kathy of course, and then an early night, we have to be in the hospital by 7.30am. What a thought to know that tomorrow night I will be uploading a photo of the little one onto this very blog!! Amazing Grace is what it is.

Answers to prayer.

This afternoon we had to go for another scan, as the amniotic fluid was very low on Tuesday and our consultant was quite concerned. We are booked in for a planned c-section on Tuesday, but this scan was to check we did not need to move it sooner.
Yesterday Nic had a strong feeling that we should be praying bigger prayers for healing this baby. We sent an email to a few people and this afternoon before we went for the scan some friends came around and prayed with us.

We went off to the appointment ( bags packed!) and saw our consultant who had arranged especially to see us and had the scan. The Amniotic fluid measurements were back up to normal which was fantastic. Our doctor was quite surprised, but obviously very pleased. It means that we will go ahead on Tuesday morning with the birth. The whole scan situation today was so different from normal (I am not normally the biggest fan of scan days!) Our doctor was very relaxed and spent ages trying to get a nice picture of her face for us. She actually got so carried away looking, we had to tell her to stop!

Our doctors passion for her job was really evident today, she seems to take a pleasure in looking at our baby as a whole, not just her problems.
She will not be doing the operation, but has said she is around if we need her.

So we have a few more days of peace, time to finish the DIY ( Nic) and put our feet up ( Kathy) before we meet her.

All very scary, and very soon!!

On Saturday Kathy noticed the little one wasn’t moving quite as normally as she was, only under considerable prodding and poking so we went into the LRI to have them both checked out. All was OK although today when our consultant heard about it she wanted us to go in for an additional scan. This scan has shown that there has been significant reduction in the amount of amniotic fluid surrounding the baby, apparently a sign that the baby is not well and not growing as she should. So the consultant has decided to bring forward the caesarean to next Tuesday at the LRI (not Nottingham due to ease of making arrangements) and to give us an additional scan on Friday where they will just make sure she is still OK. Kathy is to pay close attention to baby’s movements and at the first sign of any changes we will go in to the hospital but hopefully she will make it to Tuesday!!

Suddenly it is all very soon and very scary. It is also strangely a relief that finally something is going to happen but of course we would rather not this way. Kathy is just starting her first week off work so she will miss out on those few weeks relaxing at home unfortunately. I have decided to take a couple of day’s holiday before the birth so I am now at home for probably about a month which is certainly not a bad thing!! My work have been great with all the time of I have needed

So, just what to pray for? Firstly that over the next week the baby will not be under any distress, that the Caesarean will go OK, it is a major operation for Kathy, that we will make it to Tuesday and the Friday scan will be OK for the weekend.

Also something which seems a little strange in the circumstances but its about my knee. I tried it out last week and its now back to square one; walking ok but any twisting is very painful and after sitting down standing up can be excruciating. I really don’t want this to be an issue over the next few weeks. I have physio and orthopaedics referrals coming up.

Finally, thank you to everyone who has been thinking and praying for us recently. It has made such a difference and although baby’s not been cured so far we have certainly enjoyed this pregnancy, scans and all and that’s a great answer to prayer. We are entering a new phase with this baby and again all we can do is to trust in just how loved we are by a wonderful and powerful father God.

I have finished work!

I am officially a lady of leisure, I finished work last Thursday to a great send off. I would like to say I am missing work already, but actually I am making the most of my time off before she arrives!


A friend of mine reminded me of this old song and I have been meaning to post it for ages.

Father I place into your hands the things I cannot do
Father I place into your hands the times that I’ve been through
Father I place into your hands the way that I should go,
For I know I always can trust you.

Father I place into your hands my friends & family
Father I place into your hands the things that trouble me,
Father I place into your hands the person I would be,
For I know I always can trust you.

Father I want to be with you & do the things you do,
Father I want to speak the words that you are speaking to,
Father I want to love the ones that you will draw to you
For I know that I am one with you

J. Hewer 1975

Simple, but truthful words.

To test or not to test, that is the question....

When we first went to have this amniocentesis test at 20 weeks it was Kathy who backed out at the last minute and I am glad she did. It was my turn to pull the plug today. It just seemed a little futile still. Were the test to induce premature labour, a possibility, we would the have all the premature baby issues to contend with as well. So we are waiting now until the baby is 36/37 weeks when, even if it does induce labour there will be no additional avoidable problems.

As for the hydrocephalus, that continues to increase, now at 17mm. The difficulty is that the longer she is in the womb the more possible damage there is to the brain but the better the lung development will be. We are pretty sure now we will be having an elective caesarean at Nottingham, so when they feel the lungs are sufficiently strong and assuming the hydrocephalus isn’t too bad we will go there to have the baby. After a morning class on the intricate and gruesome details of labour a caesarean sounds like a great option to me, but of course it not happening to me is it!!

We are nearly there with the nursery now. I will upload a photo when it done. Getting that ready has made me think about two areas God has provided for us in abundance as always. Firstly financially. We have some lovely things, pram, furniture, cot, etc which have either been given to us or got second hand at exceptional prices. We know our finances are going to have to change but this has made the transition easier. Secondly and most importantly, just how lucky we are to be having this baby at all. so many people can’t have kids for one reason or another. We had a taste of what it was like to have to wait a time for this to happen and it was so hard. We are so grateful to be having this little girl who will be with us soon.

I have just been pointed by a good friend to the following verse in Isaiah that seems very appropriate.

“Then you will know that I am the LORD, those who hope in Me will not be
disappointed." Isaiah 49 v23

Scary!!

I came home from a round of golf today to see the nursery decoration completed. Kathy’s done the painting and we had the carpet laid today. Seeing the moses basket in the corner was a shock, we are actually having a baby, and she coming soon!!!

Tomorrow will be a difficult day. With not having had a scan for over 3 weeks now or spirits are high but we don’t know what we will find out tomorrow or next week when we get the amnio results. Well just have to wait, see and keep praying. We know we are being well looked after!!

Getting there!

Well, we are getting there. After months of wishing I was more pregnant and had a bigger bump, I finally have it and realise that not being able to see my feet & getting out of breath going up stairs is not all that fun!
We have not had a scan for about three weeks and it has been lovely to feel ‘normal’.
I brought a book recently about baby’s first year ( I did also buy the Gina Ford book, but only got through the first chapter and got very scared!). I flicked to the end of this book and it had comments from people this lady had worked with. One of them thanked her for helping them to be a normal family living with their special needs daughter and I realised that I wanted that for us. We are facing a different life, but it is really important for us and our daughter to have as much normality as possible & this is my wish & prayer.
Our nursery is getting there thanks to help from my mum, so should be done before our scan & Amnio on Friday. I also only have four working days left, which is great. I am ready to sit in the garden and put my feet up while I still can!

Time to get ready

Finally back from Spring Harvest. A week in a Butlins chalet can certainly wear you out! We had a good week especially a talk on the last day about how to live with disabled children. A little premature I know as we don’t know the extent of our girls problems as yet but it was a really reassuring talk. We also got to meet the lady who was leading the talk and she lives in Leicester and also goes to our parent church. It was our first time with other familys who have difficulties and it was a really positive one. Thankyou Spring Harvest.

As always on these conferences there are a couple of key things that we try to take away with us and remember. I’m sure Kathy has her own but for me there were two things. Firstly, about seeing a ‘Glimpse of his Glory’, like Peter did on the mountain that time. I have had glimpses such as when we first found about our baby and how God cradled us and, although not quite so prolific, will try to remember them when things get harder as they are almost surely going to.

Secondly about being a ‘Big Picture’ Christian. So many times I’ve got wound up in things and completely missed what was really happening; too many to mention here. I must do better!

We have cancelled with our consultant’s permission our scan this week. We have the amnio the week after so didn’t want to go through any more unless absolutely necessary. She told us there is nothing they will do anyway as she’s in the best place possible at the moment. We were told however that if the hydrocephalus gets very bad they may induce at 36 weeks. Only 4 weeks away. I pray this won’t be necessary.

Another thing I remember from the Xtra Special Children course is about the importance of praying for specifics. I think this blog helps with that but I will try harder to be more explicit in prayer requests. We will keep up to date the prayer request list on the right of the blog.

Fame at last!!

I was asked ages ago if I would do a diary of the pregnancy for the national magazine Practical Parenting. It is one of there regular features on regular peoples pregnancies and I was in this month’s edition as the 2nd trimester example. It felt slightly strange reading it as it spans the time before and after our scan. After we told them what had/was/is happening I was pleased they were still keen to go ahead.

Thankfully most pregnancies do go without any problems, but the reality (as we found out) that there are always those exceptions. I still wanted to do it however, because small numbers as they are, there are other people out there who do not get the news they hoped for at their scans. Maybe this will help them? Part of the reason for this blog is to share whats happening and we are pleased they published the blog address.

We have had no scans for over a week which feels really great. I am not sure how helpful they are to us. We are off to sunny (hopefully!!) Skegness this week for ‘Spring Harvest’ with some good friends. It will be our last holiday just the two of us, as she is due to arrive within the next nine weeks. I had best try and get all the sleep I can.

P.S. I'm sure Nic will post a copy of the article soon!!

Bad News Delivered Well

We went though the results of the MRI scan baby had last week and our baby’s now has hydrocephalus. 13.5 mm, in the ‘Moderate’ hydrocephalus range. After yesterdays scan we were prepared but it is still very hard. We knew it might happen and was even likely too but it could have not happened at all or it could have been later.

Of course again we don’t know what impact this will have. We are told 60 – 70% chance of there being little effect which is good and also that the baby has had 29 weeks of good brain growth is something to be grateful for. She told us of baby’s with twice the volume of water and half the age. That must be so hard for those parents.

It is likely now that there will be more surgery in the baby’s first few weeks which will again be difficult. We are also not so sure we want to continue with so many scans. They are hard and there is so little that can be done. Maybe best to just wait and see? We will talk with our consultant.

We were very glad to have met with our very kind Neuro-consultant who, in contrast to yesterday, gave us this news in the most positive way she could have.

I don’t know what else to say. We asked for God’s will to be done and for this to have a positive effect on our lives and those around us and we have to believe it is. We would certainly like to see some of the miraculous healings though. We continue to pray and keep going as best we can. I have a nursery floor to lay this weekend!

Rough Seas

I was looking forward to writing this today to say how great our Alpha went last night, and it was really good, we cant wait for next week. But again things change we find it just as hard as day one.

At today’s scan a consultant we had not met before told us the ventricles in the head had increased to 13mm well above the borderline 10mm we had previously been told. Of course this being a new consultant on our case we got yet another opinion. This time saying that it wasn’t necesariliy hydrocephalus and may have just been normal growth. This contradicts what we have previously been told and just make me angry. I cant handle having to balance yet another opinion, I want to know the facts. There was a sense of security given us by the doctors in at least a consistent opinion. I did question him on this and got a standard answer that didn’t really make me feel any better about it.

It wasn’t just that that made me angry. When we entered we were just told about the student doctor, not asked. It was left to me to check it was OK with Kathy. During the scan it appeared as though he was talking to the student more than us casually giving us information that will change our life as we know it. It was all I could do not to start shouting at him.

I don’t mean to be nasty to him, he did nothing wrong it was just a new approach. All the others doctors have been exceptional and in a strange way we have got to know them. It was just a bad day with bad news.

Tomorrow we have our appointment with the Neurosurgeon in Nottingham to review the MRI results. We were nervous when she asked us up there and after this we are dreading it.

I read this morning Ephesians 4 v 14. All about waves and rough seas and how Gods Word gives us the ability to ‘stand our ground’. (v16) Certainly seems appropriate for the title of this entry.

Alpha

Less than 3 weeks to go now. Not much to report on tha baby front, Kathys getting those Baxton hicks things whatever they are aswell as getting a bit bigger every week. All attention is on the alpha course we are starting at our house on Tuesday. Looks like we have lots of people which is very exciting.

Im sure we have another apointment this week but I can't remember the date. Probably Wednesday. I think we have one every week for the next few weeks.

Thanks again for everyone who is praying for us. We do have better and worse days, and its a confort to know people are thinking of us.

Faith

We had a meeting on Thursday and another scan. The meeting was with the consultant team who will look after us before and after the birth. It was an opportunity to ask questions and find out a little more about what we may be able to expect, the potential problem areas.
We had our “regular” scan afterwards to look at babies growth and any changes in the fluid in her brain. The measurements did show an increase in the fluid which is what we have been told to expect and the doctor was not overly concerned, but I found this a real blow. I think it is the uncertainty of what effects this could have on her brain development that really scares me, and the fact that I can do nothing about it. I am sure anyone who has seen their child ill or in pain feels the same helplessness.

To say that this is not testing my faith would be a complete lie, but I am reminded that “faith is being sure of what we hope for & certain of what we do not see”.

We want to be able to control this situation and we cannot, but we can trust in God, who we know has been faithful to us in the past and has promised never to leave us or forsake us.
One of the small blessings of having so many scans is that we get to see our girl before she has arrived. On Thursday we saw her wiggling her toes which was a really exciting sign, she was also captured on camera with two fingers in the air, so we may have to have some words when she gets here!

More Appointments

Forgot to keep posting the dates of our various scans, we appreciate the prayer for them, so far each scan has given good news so I dare not stop asking people to pray for them!!

We have a multidisciplinary meeting (Us vs. 4 consultants) on Thursday followed by another scan. We haven’t been to the hospital for 3 weeks with the exception of 3 knee visits!! As the due date gets closer the risk of hydrocephalus (water on the brain) we are told increases. The doctors seem to be expecting it to happen soon which is disappointing. But its not there yet and it doesn’t have to be so please pray that will not come back any time soon.

Next Monday we have to make a trip up to Nottingham again where they will perform an MRI scan on the baby. Just amazing what they can do now. This willl give us more details about the spinal problems and help the surgeons plan better for the operation after birth. May also provide a few more pages for the photo album!! If the baby’s feeling energetic they may have to sedate Kathy and therefore the baby which we would rather didn’t happen.

Less than 3 months to go!!!

What a Pretty Wife!!

I have been finding it difficult to write on the blog recently We have described how we have been carried and riding on a wave this last few weeks and it has been a pleasure to share that with everyone. But why continue? I am not sure I now want others to know how I am doing when I am not doing so great; when life just seems normal.

Things have got normal so quickly, some of the really great habits we started are dropping away as the real world takes it share and of course the bad habits are creeping back in. Last year I spent 2 weeks in Hong Kong with Jackie Pullinger’s ministry, St Stephens helping look after the addicts. I was so out of my depth I didn’t know what to do or when or how. (Answer: pray, all the time and pray, respectively) It was an amazing 2 weeks that I wish I could have shared with Kathy. After I got back again after a few weeks the excitement had left and I was back in normal life again similar to now.

I know these things have not been in vain. My normal has changed immeasurably. I have learnt and continue to learn a bit more about grace each time. Some of the promises are now in full swing, a church youth group is under way with an Alpha course soon to start, my guitar playing continues to improve and Im still learning how to pray. That’s just the tip of what happing to people around us at the moment which we are so grateful for.

So why continue writing? My main reason is to record what’s happening to us and our baby. Maybe one day she’ll read it herself? But also as a testimony to how we choose to live and what God does/has done for us. there are more exciting stories out there to read but this is just our story.


We still haven’t had the amniocentesis which could again radically change our lives. We just don’t know at the moment what’s going to happen and living not knowing is OK. There are so many good stories out there we have every reason to be very positive. But all the possible outcomes aside we are just trying to keep focused on the one who takes care of us and will give us the best on offer.

“Which of you if his son asks for bread will give him a stone?… …If you know how to give good gifts then how much more will your father in heaven give good gifts to those who ask Him!”

We have no doubts there are many good gifts on offer if we just ask for them.

Our most recent of gifts has been a short trip to Cornwall, very relaxing especially while sampling some of Rick Stein’s rather nice and reasonably priced food. Although be sure the photo is only showing an increase in belly volume do to being 6 months pregnant and not the cheeseboard. What a pretty wife I have.

Midwifes & knitting

I went to see my midwife today, the first appointment since we found out about the Spina Bifida. She had a student with her, so we went through what had happened. She was reading out my results and the discription of our baby and mentioned that she had never come across anyone carrying a baby with SB before. She's a good and experienced midwife and has offered me support, but at that moment she made me feel very alone. Irealised again abnormal our situation is. I guess we have got used to the normalilty of our situation to a point, but I have to realise that other people will react and that is hard.
The good thing is that we are able to enjoy waiting for her to arrive and when other people react I have to remember that. She is our baby!

On a different note, some strange pregnancy hormone has kicked in and I have gone out and brought knitting needles and wool! planning to make a blanket. I had to take it into work to ask advice re casting on as I could not remember. My manager helped me... thats what they are for!
At present I have one slightly dodgy looking square completed, only 19 more to go!

Woe is Me

Finally back to the blog. Been a busy week, my knee is still not great, I have to take stairs 1 step at a time and my flu has left me with a chesty cough. In comparison to our last few weeks and the reason for this blog it’s been a walk in the park!

While our friends were praying for us a few weeks back they both had a picture of a girl with flowers in her hair and as one of these friends is very talented with a brush we now have a great painting which will soon be our wall. I can’t wait to see our baby girl in a few years to make a comparison!!

“High degree of mental sub normality, paralysis of the lower limbs and lower trunk, incontinence, half die within 5 years of life and only a minority are free from a major handicap.”

The same day we found our about our bays spina bifida I knew the importance for us of not typing it into Google to see what it means. We would wait for the doctors to tell us facts before we jumped to conclusions, I think I said probabilities and Possibilities earlier? After 4 or 5 days and after our second scan we decided to read one article in one book ‘The Encyclopaedia of Pregnancy and Birth’, a seemingly safe source which gave us the description above. God has been answering our prayers from day one. In that we have no doubt.

Here is one of the latest 4D scans (the 4th being time so strictly speaking this is 3D). We call this Picture ‘Woe is Me’. This pretty girl is going to have a portfolio before she’s even born!

Of course a huge thank you to all the cards, phone calls, letters, art work, etc. We have such great friends and family. Thank you.

My blogger is poorly!

I am writing this update as Nic is not well and has been confined to bed with a cold/flu. The positive of this is that he is resting his knee which is still causing him bother. We seem to be a right pair between us.

Bump on the other hand seems to be doing well. We had another scan today, one of the regular three weekly ones. I have to say that I do not look forward to them, although it is great to see her on the screen. All seems well; the fluid in the ventricles is still within normal range which is great. They took some measurements today; she has long legs just like her mother!

I am 24 weeks and have now resigned most of my normal clothes to the back of the wardrobe, my sister in law is very disappointed that I do not have fat feet and face yet, I am sure I will! Nic can now feel baby kicking which is great. I am experiencing indigestion which is not so great.

We are still trusting and praying for our little girl. We were reminded by someone at church of what we said before we had our first diagnostic scan. We said that we want to have the baby that God wants us to have. That is still our prayer.

Amusing moments

A little post script to the last posting which I found quite amusing. As we left the hospital, I had to run ahead to get the car and drive round and pick Nic up from the maternity entrance…. Mmm, something seemed wrong there.
Any concerned parents or friends of Nics should know that he managed to play Tennis on a Wii tonight, so things cannot be too bad!

Hospital Season Ticket Required

We have just got back from our 3rd hospital appointment in less than 24 hours. The last of the three, the cardiology one went fine, as far as they can see at 23 weeks the baby’s heart is normal. It was a bit nerve racking as she was scanning and saying nothing but it seems hat was just her way. Shes the 3rd consultant we have seen and they have all been really good. She and her colleague will become or main points of contact in a couple of weeks time when we transfer to the Royal. Still no hydocepalus so that is great, we will keep praying for that!!

So on to the other 2 visits. We had a little scare yesterday afternoon and they asked us to go along to the General for a mother and baby check-up. Thankfully everything is fine but it certainly gave us a scare.

And as for the third appointment I have been feeling a little left out so a thought a trip to A and E would be fun!! Hobbling in with a twisted knee didn’t turn out to be too entertaining however so I have to go back next week when I’m able to move it a bit more so they can put a camera in to take a closer look maybe. Thankfully our respective jobs are being very accommodating with all the time off.

And then to top it all off I locked my self out of the house!! A friend took me in resulting in a fun morning and a firm commitment on my part to buy a Nintendo Wii, for the baby’s entertainment of course!!