January 2008 Shiny New Year Toddlers - Toddling, tempers and tantrums

[madmouse]

ok then, thought it sounded better this way round.

hope everyone finds it!

Have been trying to get M to sleep since 6pm

She is not a happy bunny and refusing to settle ATM

Poor J is in the same room as her and poorly himself and being kept awake so also not a happy bunny!!

Will give M another 5mins or so and then bring J into my bed for the first time ever

LaT - sorry it sounds like you have had a stressful day too

Madmouse - Glad Nathan seems on the mend...

JKS - Glad H not been too bad today. You have reminded me I must get J's hair cut soon....

Nicky - only 8 wks to go Seems to have gone really quick, although not for you I bet!!

Gingeme - am very of the holiday you have booked...

JKS it is the right time to be in church, and to ask Him why he is doing this. Believe me I do. It's part and parcel of a relationship. Believe me where i am right now I have my questions...being a minister's wife can make that even harder and I very much rely on some faithful friends praying for me on a daily basis. I actually called the God i love a lot an ar**le when Nathan first landed in NICU. He is big, he can take it.

Nathan had a continuous EEG for 5 days, then a detailed EEG, a CT scan, and MRI scan and a diffusion weighed MRI scan. The diffusion weighed one showed the damage, probably caused by blood clots. Some bits of his brain look a bit like swiss cheese, which is why he has higher risk of epilepsy, epilepsy is nothing but abnormal electricity currents and little holes have a tendency to create those.

I tend to read sn every day, often post little messages of support/sympathy. Don't often post for myself as Nathan is coasting nicely.

The fact that H is unwell may well have caused the 'visible' seizures, often poorly kids who are otherwisee well controlled get what we call 'breakthrough seizures' when they are coming down with something, which might make this horrid cold a blessing in disguise as at least you know something is wrong.

Gingeme - I do envy you having has all the children you want. That's where I want to be

Simpson- Oh lord! SO sorry. Have NHS rung back yet? M asleep?

Madmouse - Glad Nathan is relatively well. Did he manage anything before bed?

JKS - Sounds like a peaceful day. What you need. I hope the colds don't get any worse and you have a good night.

Sabela didn't want any tea either and was a right squawkathon again. Wearing and I am exhausted. We regressed back to an Ella's Kitchen pouch! At least she ate something. She smiled at a Petit Filou but when I opened it she burst into tears. In bed now, thank goodness.

Thansk for asking about Dad TBH he's finding it so difficult to eat that days are pretty stressful. He does seem to have put on a little bit of weight though.

Last thing he said to me last night was, 'My first month has gone.' Feel just awful. Oh well. Onwards and upwards.

Simps - can you let J get off to sleep, by taking M out. then try her again later once he's firmly asleep?
that's what we have done with H and T in the past.

MM - i like the 'He is big, He can take it' comment

he's certainly hearing from me at the moment

LaT - so for your poor dad!
(mind you my gran was given 6 months and lived for 2+ years so it's not a definite). as long as he can have some quality of life and isn't in pain/can control any pain then he should just enjoy himself while he can.
maybe make a list of fun things he wants to do? (make it a long list).

S will catch up with food when she's better. H loves chocolate mousse but couldn't finish one this evening, the cold has certainly affected his appetite!!
(he normally screams when the mousse runs out )

JKS have just gone and dug out Nathan's paperwork (noticed doing so he had 15 different drugs including morphine in the first few weeks of his life!)

Everyone else now probably wants to switch off...

An EEG on day 4 showed epileptiform abnormalities mainly on the right. A subsequent MRI showed multiple areas of brightness on the the diffusion weighted image suggesting areas of infarct. A CT scan was then requested confirming the findings and the report follows:

There are multiple focal areas of low attenuation seen in the frontal lobes, especially on the right, and in both occipitoparietal regions. They correspond to the areas of signal abnormalities inthe diffusion weighted MRI. In addition there are serpiginous areas of higher attenuation seen over the convexities especially on the left. It is possible that this represents cortical haemorrage or calcification following infarction but no mass effect is seen.

Not sure this helps other than to sow how blooming complex this stuff is.

Can't help much with MRI as Nathan was completely drugged up and out of it anyway. They just took him in a special incubator and brought him back when finished. Feels unreal now

Gosh MM it is complicated! guess the sayings about brain surgery are true, lol!

Hope it's not dredging up bad stuff for you - reading that report seems really bad but then i think about the little boy i met and it doesn't seem real. He's beaten their prognosis at every turn though hasn't he? so maybe the brain can regenerate/make up at such a young age? dunno about this but have heard it said.

Not dreading the sedation so much as T had his testicles descended just over a year old and had a GA for that so we are calmer about planned hosp visits than we might otherwise be.

JKS the brain is amazing at rewiring, especially in children. Their brains are very plastic and other bits can take over. Interestingly with Nathan the worst damage is in a part of the brain that has a set task, ie processing what the eyes see, and that task cannot be taken over elsewhere. Except it has. Doctors have no idea why he sees. That's where that big God comes in you see .

LOL MM - just shows, you never can tell....

JKS - M has been downstairs twice

She has just gone off now

How long before H's next appt?

In the end I put J in M's room which he will have to share for tonight with MIL. He is on mattress on the floor....

LaT - M finally ate and she would only eat a 4mth jar hipp organic one she managed a quarter of it but at least its something...

Ange - forgot to say a bad day for scum hehehe

Glad they've both gone off eventually. it's no fun battling sleeptime.

No idea re next appt - the MRI. but our consultant doc seems good at pushing things forward - getting the eeg on friday instead of 2 mondays later, seeing us on the saturday, etc.
he said that paeds normally only have a session of 5 slots a month but he will pull strings to get an 'odd' appt. was telling the registrar he would have to be there which i found kind of funny.

Yes not used to battling sleep TBH.

I do think that M was trying it on at the end as I brought her downstairs in sleeping bag which have never had to do before so she thought "oh this is new/fun" iyswim

What do you expect to happen at the eeg?

mri - he's had the eeg. he will be knocked out/sedated in some way. one of us will stay with him (not sure who is best at this stage).
then the whole 'as seen on ER' scene of big noisy tube machine doing its thing.

after that, the report will go to GOSH and we'll go up there for a discussion to decide on meds (if he's not already on them by then) and hopefully ge some kind of prognosis to guide our expectations.

Oops sorry putting wrong thing did mean MRI

Sounds like hosp have it covered for the moment all you can do is wait...

What are you planning to do about your trip? When are you going anyway?

Hi

first chance to catch up week, drove back from Suffolk to Northumberland yesterday, dad came with & drove half the journey tho, and I dropped him in Yorks so he could go off & do some hiking.

DH 40th birthday party last night so v tired now, although I let him cut loose and I went to bed relatively early.

A has been very unsettled at parents', massively clingy and wouldn't be left alone without moi, so not as much of a rest as was hoping. No TV (parents not into it) lots of sunshine and DS tearing around in garden nappyless was nice though. A friend called him a little tornado and they are right. Still no words here though just babble !

Sorry to hear of H's diagnosis JKS - sounds like you are getting some good consultant care - that can make a big difference.

yay simpson!

bath just ran over while I was catching up on thread

love to everyone else as usual

well we are operating on a rolling 24 hour plan atm!

DH is meant to be going to PIL with T this weekend.

We are both meant to be going to Bermuda whilst PIL stay here in mid-June.

We were planning a trit to see friends in Jersey in August.

Also planning a Center Parcs trip in Sept.

All up in the air for now.

Our Bermuda flights are refundable, as are the hotel bookings.
everything else is 'unbooked' for now.

want my bermuda trip + rum cocktails but not if i'm not enjoying it and stressing about H.

we can treat ourselves as a reward once things settle down (if they ever do )

Bermuda was the trip I was thinking about..

I guess you have a bit of time before making decisions on that one....

How long would you be away?

Ange - this day will go down in history...I think a new song will be written

Morning all

a good night's sleep, at last. H woke all of us at 5.55 which isn't too awful.
he's back in bed, T watching Robots, again, DH and I mooching.
i like Bank Holidays

Simps - we are meant to be going on a Wed, arriving back on Tues, so just under a week away.
Can't imagine at the mo that we will go but it's all cancellable right up to 2 days before (i think anyway!) so will just leave it.
PIL are booked in to come and stay so they will be fine with it all but guess it depends where we are with fits/meds by then....

JKS glad you had a good night. Not a bad one here too, but then I think i was too exhausted even to have flashbacks

Actually had some hubby and me time in bed before ds woke up at 8 - must have been shattered too. He has wolfed down a weetabix with fruit puree and would probably have eaten more if we let him as the bowl is clean - yay.He is very thirsty though, trying to convince him to drink bit by bit instead of gulping, with mixed success.

Have nice BH gals, hoping it will stay dry here, having two friend-families coming for bbq - although my goddaughter has chickenpox so she will have to stay home with mummy or daddy . Not a good time for Nathan to get c pox as he is just better and he is 3 months behind on his jabs which we really want doing now!

Hey MM - hope you have fun today

H now behind on jabs too, just his MMR & Pneumo ones but still, oops! have felt bad every time we had to explain to docs that he's not had them.

Glad N eating well today

Have had AF here to deal with all week too, plus cystitis which is going slowly i think. such fun and games....

off for a walk round the block with T for some fresh air.

Feeling a bit hung over today

M seems a bit better J very pale...

Was supposed to be going into Town shopping but don't think DCs are up to it so having a lazy day at home instead...

Just p[opping in to say we're flying tomorrow. See you in a couple of days.

To all you littlies! I want you over your colds by the time I'm back!

Simps - you better yet? mind you i hear hair of the dog works well too
M&J ok?

LaT - enjoy, speak to you soon (you're back in Spain for a few days right then back t the UK?)

All ok here, was thinking we might get through a whole day without even the absence seizures then H had about 10 in quick succession just before bedtime

But hey, hardly anything really - am keeping a proper diary of them as well as his sleep patterns and will see if anything comes of that.

got some lovely red wine on the go
T running about, best go and put him back in bed....