Friday 21 May 2010

Your secrets revealed next week

How many of us are glad that there are things about us that no one knows? I wonder what would happen if I was to announce on a Sunday morning in church that the following week every person present will have something about them revealed on the projector that until that point no one else knew. I guess some people may be torn between turning up to see everyone else's stuff revealed and not turning up so as to keep their own secrets - but I'm guessing the church would be a fairly empty place - at least it would give an indication as to who wasn't listening the previous week!

But Hebrews 4:13 tells us that God knows everything about us - nothing at all is hidden. And 4:16 tells us that we can come with confidence into the presence of God. How is that possible? If God knows exactly what I'm like and what I've done and what goes on inside my head, how is it that I can come to God with confidence - especially when we think that the first readers of Hebrews had grown up with the tradition that only the high priest could enter the presence of God - the Holy of Holies - and then only on one day a year, the Day of Atonement - and then only after having made a sacrifice for his own sins.

It's possible because between verses 13 and 16 we read about Jesus and in verse 16 we read about God's mercy and grace. It's possible, not because of what I can do, but because of what Jesus has already done, on the cross.

So rather than sweep our rubbish under the carpet and hope no one finds it there, let's believe that God has dealt with our past failings and step into the present with confidence.

To listen to this message click here.

Tuesday 11 May 2010

She's home

When Su and R got back from GOSH the doctors at NP said that R could come home straight away, with aspirin (disguised as a Petits Filous), so when I arrived it was just in time to help with the packing up process. R was very happy and excited, rushing around and making sure that all the drawers and cupboards were empty. She really was back to her old self.

They still don't know what happened or why or whether it could happen again - but there is no need for R to stay in hospital until they do the tests. The remaining tests may not happen for another six weeks (we'll let you know when - and what the results are). What we do know is that in the meantime R isn't sleeping on the top bunk - something that will delight S no end!

It has been a hard week, but we have a lot to be thankful for. We thank God that I 'just happened' to be outside R's room when this happened - almost anywhere else in the house and we wouldn't have heard a thing. We thank God for answered prayers. We're thankful for you, for your love and support and prayers - for those who got in touch, for the many offers of help, for those who prayed, for the more than 300 of you who logged into my blog for the first time this week to follow what was happening and to pray. We're thankful for the NHS and the staff - even if R won't miss them one little bit in the morning.

So that just leaves one thing to decide - what shall I blog about tomorrow: something from Hebrews 4, our new Prime Minister, the book I'm reading at the moment...

Once again our paths have crossed and you have journeyed this bit with us. Thanks for being there. Love Keith and Su.

Monday Update

As I write this Su and R are on an ambulance making their way back to Northwick Park from GOSH, so I will head of in a bit and get a full update on the day. Much of it, I gather, was spent waiting for ambulances - finally leaving NP at 11am for a 10am appointment at GOSH. Just as well we don't know in advance when accidents would happen - because if we had to book ambulances the night before for an emergency the following morning ...

R only had the EEG today, but let that happen with minimal fuss which is good news. As far as answers we still don't know. R saw a number of people and the opinion is that there is still a very slight weakness on one side of her face - which would suggest a stroke. But what was showing up on the MRI almost certainly happened at birth rather than being new damage - which would suggest a seizure. The EEG on its own didn't solve the puzzle.

R saw the specialist at GOSH who has received all her notes etc and he will book her in for an ECHO and an MRA as an outpatient in his clinic - this may be in weeks rather than days. R was very much back to her normal self today apparently - which is good news, for which we thank God. I think they may well be looking at sending her home in the next few days, on aspirin, while they wait to do those further tests.

I'll update later if there is more to know.

'A' saw the doctor this afternoon - just a virus. And is now on the BRAT diet (bananas, rice, apples, toast) until that clears up. She managed the rest of the day without going through any more sets of clothes.

Change of Plan

Just to let you know that the plans have changed - but not sure how much by yet.

I'm now staying at home to look after the girls as my mum now has the bug that we've all had - and A still seems to have - so I'm taking her to the doctor this afternoon as it's been a week for her now - everyone else gets it for about 24 hours - but the sooner she stops infecting anyone who looks at her the better! The only one who has not had it is S.

The last I heard Su and R were still waiting for them to find an ambulance to take them to GOSH for 10am - so starting to get a little tight on time.

Need to rush S to playgroup. I'll be back later when I know more.

Monday 10 May 2010

A day trip to GOSH

Got back from the hospital a little while ago. R was pretty much asleep the whole time. We woke her up to take a couple of spiked Petits Filous which she ate no problem, but she was very withdrawn. Got a couple of nods but no words. She identified all the fairies out of Tinker Bell by pointing to them, and then she went back to sleep. Hopefully she'll wake up a bit happier tomorrow.

All I know about tomorrow is that she's booked into GOSH, and the ambulance is leaving at 8.30am. I may have to take the tube - but that should beat the ambulance anyway at that time in the morning. Not sure which or how many of the tests she is having done, but it will be a general anesthetic as she is not allowed to eat after midnight - presumably it is the whole lot. [Every time I mentioned an ECG I think it should have been an EEG].

I'll let you know how we get on tomorrow evening - we may even start to have some answers by then.

Plan D

How do you get a child, who is refusing all treatment, to have an MRA scan?

Plan A: Sedate them.
Problem: Won't take the medicine orally.

Plan B: Put the two sedatives in two Petits filous, one raspberry and one peach.
Problem: May taste the difference and refuse to eat them.
Further problem: child may never eat yogurt again!

Plan C: Give a different sedative using the line already inserted in her wrist.
Problem: She may be so attuned to danger that the moment you lift her onto the table of the MRA machine she will wake up screaming.

Plan D: General anesthetic

As you may have guested we had a few hitches with the sedation approach to getting R's MRA scan done today. Even sedated R was still alert whenever and doctors tried to do anything to her!

Once safely back in her room she slept soundly for a couple of hours but was still obviously very cross with everyone when I left earlier to come home and see S & A.

So it seems that the only option left now is to make a list of all the things they want to do and to see whether they can all be done at GOSH, all at once, under a general anesthetic. Whether that will all be possible tomorrow or not, I hope to find out when I go back to the hospital a little later.

When I arrived at the hospital this morning R was continuing to make good progress, playing with toys, doing some writing and colouring, watching Cinderella videos...

Morning

For those of you who were wondering what I was doing writing the last blog early this morning, rather than giving A & S their breakfast - it was a scheduled post - I wrote it last week sometime to post automatically this morning, and forgot all about it until it popped up on my screen just now!

Nothing new to report this early. A & S both had a good night, S is still asleep and A is tucking into her cherrios - so must go!

Online Bibles

This coming Sunday evening we are going to be doing the third is our once a month series looking at different methods of studying the Bible, based on Rick Warren's Bible Study Methods.

This week we are looking at Thematic Bible Study - where we will learn about searching the Bible to see what it says on a particular theme. This involves picking a theme, choosing a few questions to ask, and then searching the text for a variety of key words.

One study I am looking forward to doing, in the not too distant future, is looking to see the things that Paul prayed for the churches he was involved in.

I will search on the words pray, prayer, prayers etc (pray*) from Romans to Philemon; and will ask the questions:

1) What does Paul pray for others?
2) What will be the outcome of these prayers?

One way of generating a list of verses would be to look in a concordance. But I have recently been directed to an online Bible that allows you to search part of the Bibles for words or phrases. If you're interested in this sort of thing, it is worth checking out. Click on the link below.

www.blueletterbible.org

Sunday 9 May 2010

Petits Filous

If you've ever wondered how to get a four year old to take paracetamol and aspirin when they're refusing all medicines...the answer is: Petits Filous. We shared a picnic on R's bed with Petits Filous (which only R ate) and biscuits that we shared.

It looks like tomorrow R will be having the MRA under sedation at Northwick Park - sedated by a Petits Filous!

More tomorrow.

Happy Girls

We had three very happy sisters this afternoon as R, S & A were allowed to play together for a while at the hospital. They have all been missing each other. R was a lot better today, having got over the sickness bug and the related high temperature etc. The hospital were also consciously keeping a low profile, in order to give her an ordinary and relaxed day as possible to try to counter her negative responses to any kind of medical professional! She has spent time playing and talking, and really enjoyed the visit by A & S.

Later in the afternoon after I had brought A & S home the doctors wanted R to come out and use the play room in the ward, and also to wander around the hospital, so she went off with Su for a bambichino at Costas.

A & S are being looked after by their Nanny this week, having had a good weekend with their cousins. But both are a little unsettled. S keeps saying 'I want R to come home now', and A just doesn't want to be put down. But both are fast asleep now, so I'll head back over to the hospital. We're not sure what is happening tomorrow and Tuesday with the various scans (MRA (Northwick Park), ECHO (Brompton) and ECG (GOSH)) as they will probably need to do them all under sedation, hopefully all in one place at the same time.

Thanks again for your prayers.

Saturday 8 May 2010

Saturday evening

As far as progress goes, R is feeling a little better - I think she must be over the worst of the bug. She had a jam sandwich this afternoon, and then wanted mummy's rice pudding - all of which have stayed down. She is still not drinking enough so has fluids by drip, and her temperature keeps going up to close to 40 deg C.

But we are no nearer finding any answers. We did go to the Brompton but R has had enough of tests and so they couldn't do anything. At one point we got her to sleep, but then as soon as the ultrasound probe touched her she was awake and screaming and kicking and crying again - and the scan only works if she is still and calm!! Not even a Peppa Pig DVD made the slightest impact.

As I said before R also needs an ECG at GOSH (Tuesday) and an MRA (Monday). One option that they are exploring is to see whether GOSH will be able to do everything at one go with R under sedation. She just doesn't trust doctors anywhere near her at the moment. One of the doctors was wanting to give her some stickers this afternoon for being such a good girl and she wouldn't let him near her, so the stickers are still on the side.

So thank you for praying and continue to pray please - especially for peace for R - she's had a scary few days and has had about as much as she can take. They couldn't get her to take her aspirin this evening, and when it gets to the point of coming home, she will need to be happy taking calpol etc. It is hoped that a quieter day tomorrow, with little interference from doctors etc will help. I'm sure the peace of God that transcends all understanding applies for 4 year olds too.

Saturday morning

Just a quick note before I'm off to the hospital. I have spoken to Su and R this morning. Su is feeling much better, and R had a ten minute spell of non stop talking - which is good. She also had a good night and some breakfast. She has flagged again since then, but it seems as though the worst of the bug may have passed and it is that that has been making her feel so unwell - on top of everything else! I feel much better this morning too.

S & A are both having fun.

So today we're off to the Brompton at 11am for a midday scan. We then wait while they write the report and send us back.

More later.

Friday 7 May 2010

Friday evening update

Right...where shall we start? We're still no nearer knowing what is going on, but in the meantime they are working on the basis that it was a mini stroke as this fits most of the symptoms etc. and that the added sickness etc. are to do with an separate bug - which Su and I both have now! Su has been feeling better since this morning and I started mid afternoon - so pray that by tomorrow morning that will have worked its way through the system!

They wanted R to have an MRA scan this afternoon - like an MRI apparently, to look at the blood coming into her brain from her neck. But R had totally had enough, and it is a scary machine when you're only four, so they will do it on Monday and sedate her first.

Tomorrow we are off to the Brompton for an Echo, and then on Tuesday it is back to GOSH for an ECG - so off to some of our favourite places! At least going by ambulance we don't have to pay congestion charges or parking. They also want to do a series of blood tests - not usual ones - the kind that takes several weeks for the results to come back - so they'll do that on Monday too.

But as I say R has had enough. It takes two to give her medicines amidst much shouting of 'no' and 'leave me alone', she refuses to have her blood pressure taken - she's not feeling well, is scared, doesn't know what is going on and just wants to be better and go home.

The other two, S & A are spending the weekend with some of their cousins, so hopefully will have a lovely time, and this does give us a lot more flexibility.

So, please keep praying for us all.

Update for Prayer

Just a quick note before I head out the door to take S to playgroup. R had a stable night and we wait to see what GOSH say. But Su has been sick throughout the night. They are allowing her to stay with R but have asked that she go and get checked at A&E.

For the third night running A has been sick a number of times, but seems fine during the day. There is a bug going around apparently! She is now getting quite unsettled: doesn't want to be put down etc. but then she's too young to understand what's going on. Needless to say that it doesn't make for a good night's sleep - at least there was the election progress to watch!

Thank you for continuing to remember us in your prayers.

Thursday 6 May 2010

Another trip to A&E

For those of you who have already heard some of what I am about to write, and have been praying for us - thank you very much. I figure that this is the easiest way to keep the greatest number of people up to date.

Yesterday evening our eldest daughter, R, (aged 4), was taken into hospital having experienced what was most likely either a fit or a mini stroke. When we found her in her bed she was unable to speak or support herself, or even keep her head up. Needless to say it was a seriously scary time.

By the time she left in the ambulance she still had no movement down her right side, and not able to speak.

By the time I reached the hospital some time later she had started to speak a few words and had just started to move her right arm and leg. But she was confused and scared by what was going on.

This morning she was a lot better, and had been able to walk about and was saying a lot more, but there is still a slight weakness on the left side of her face - although only really noticeable when she smiles - which is not often at the moment! But she still has a temperature, and was sick again this afternoon, and has not really eaten anything all day.

She was very brave for the MRI scan - but the results are still not clear. There is evidence of a possible bleed, but this is on the wrong side of the brain for right side paralysis. Also they don't know where the temperature, sickness etc. fit with what they'd expect. So all the results have been sent off to Great Ormond Street - who also want to see the MRI scan that was taken when R was two and half weeks old - so that they can compare the two.

Although no infection was found on the original blood tests, further tests repeated today showed slight possible signs of infection. So that is another possible cause.

In the meantime GOSH have recommended aspirin just in case there is a clot in the brain.

And because they don't know what they're dealing with they have put R in a side room - the only drawback is that being a children's ward the TV and radio stop at 9pm! Su was hoping to watch the election results all through the night!

Thank you for your prayers and your texts etc. I'll post an update tomorrow when we know more.

Wednesday 5 May 2010

Baptist Assembly 2010

We've been away this weekend at the Baptist Assembly in Plymouth. We all had a great time, including the girls who loved the children's programme. I may well blog on a couple of the sessions over the next couple of weeks - but no promises! In the meantime here is the official photo montage of the event.