Thursday, 30 July 2009

Blue sky July

I'm on the beach at perrenporth. The sky is blue, the sun is shining, and behind our windbreakers, it's beautiful and warm.

Jordan and max are running back and forth from the water to fill the moat on one of daddy's samdcastles (yep, big kid-he can't ever resist).
Hope has the cutest lil towelling sun outfit on, but is all snuggled up under her pink blanket in her pink pram.

Toby is reading his newspaper, Faith (4 weeks older than Hope) is crawling around effortlessly and Tracey has temporarily disappeared

I was reading.' Blue sky July'. A recommended read by amazon when the other book you have purchased is called 'loving and caring for your special needs baby'. A bit of light reading for the beach. I've read to page 24, and feel as if i could have written it myself.
Did she marry my husband?
What is it with those perfect apgar scores?
Are we given those first norMal weeks so we can be physically stronger to cope with what lies ahead? Or as a taster of how things could have been?
Why is it doctors don't listen when a mum knows something is so wrong?
Is there ever a nice way for doctors to say your baby probably won't walk? Nor Talk?


I just needed to put the book down for a few minutes. Don't wanna sit on beach crying. But I'm not crying about Hope. My story. But Is this what everyone else sees/feels when they read Hope's blog and updates? They message me to say they read through the tears. Or that it made them cry out loud. That they have a lump in their throat.
So why am I not crying? I don't know. . . I do cry, only occassionally, and mainly I cry for Sam. The lil boy I miss everyday. And always will. But Hope's life to me isn't sad. She has a good life. We love her. She makes us happy. Perhaps there's something wrong with me?

I'll go back to my book in a minute. Actually probably later; I'll go watch the kids who now have a bodyboard-lol.
But when I do pick up my book. I feel as though I might be more than passively reading. Rather; looking in a crystal ball.

Cor, it's warming up here. The sun has got his hat on :0) I'm off to enjoy my family. Catch you soon
Xxx
Ps will attach photos to this post when
home.

Blue sky July z

I'm on the beach at perrenporth. The sky is blue, the sun is shining, and behind our windbreakers, it's beautiful and warm.

Jordan and max are running back and forth from the water to fill the moat on one of daddy's samdcastles (yep, big kid-he can't ever resist).
Hope has the cutest lil towelling sun outfit on, but is all snuggled up under her pink blanket in her pink pram.

Toby is reading his newspaper, Faith (4 weeks older than Hope) is crawling around effortlessly and Tracey has temporarily disappeared

I was reading.' Blue sky July'. A recommended read by amazon when the other book you have purchased is called 'loving and caring for your special needs baby'. A bit of light reading for the beach. I've read to page 24, and feel as if i could have written it myself.
Did she marry my husband?
What is it with those perfect apgar scores?
Are we given those first norMal weeks so we can be physically stronger to cope with what lies ahead? Or as a taster of how things could have been?
Why is it doctors don't listen when a mum knows something is so wrong?
Is there ever a nice way for doctors to say your baby probably won't walk? Nor Talk?


I just needed to put the book down for a few minutes. Don't wanna sit on beach crying. But I'm not crying about Hope. My story. But Is this what everyone else sees/feels when they read Hope's blog and updates? They message me to say they read through the tears. Or that it made them cry out loud. That they have a lump in their throat.
So why am I not crying? I don't know. . . I do cry, only occassionally, and mainly I cry for Sam. The lil boy I miss everyday. And always will. But Hope's life to me isn't sad. She has a good life. We love her. She makes us happy. Perhaps there's something wrong with me?

I'll go back to my book in a minute. Actually probably later; I'll go watch the kids who now have a bodyboard-lol.
But when I do pick up my book. I feel as though I might be more than passively reading. Rather; looking in a crystal ball.

Cor, it's warming up here. The sun has got his hat on :0) I'm off to enjoy my family. Catch you soon
Xxx
Ps will attach photos to this post when
home.

Tuesday, 28 July 2009

6 months old today!

I can't believe my lil plonkey is half a year already! This time 6 months ago, H was in SCBU and I was feeling rather
sore. Right now, we are all packed into our too small Honda civic on our way to Cornwall for a few days.

It's been a roller-coaster! Apart from the dodgy start that landed her in special care, all seemed well for the first probably 10 weeks? Then she kinda spaced out on us and stopped doing things she used to; smiling, looking etc, then came the nasty seizures, the diagnosis of severe epilepsy, the meds that are now as much a part of our routine as nappy changes, the counting of seizures, the return of smiles, the light that is seizure free days (some days). With all this, there have been too many appointments to even have a guess at, tons of reports and opinions and a couple of ambulances.

Today we had a couple more appointments come in the post. These ones i'd been waiting for; physio and koalas. I felt kinda choked this morning when they finally came; sad that I've wanted these appointments. Noone wants their child to have to have physio, nor belong to a special needs playgroup (koalas), but my acceptance of Hope's conditions and needs have led me to persue these options and ask for referrals. I know hope is delayed and is therefore entitled to physio, and I know that koalas will be good for both of us. I'm really looking forward to meeting some other mums with special needs children.

When sammy died, I felt compelled to seek out others who knew my pain, and through SANDS (stillbirth and neonatal death society) I have made some fabulous friends. Those people will remain my friends forever, but now I find myself looking for a new group of people; those who understand what it's like to be raising a child for whom the future is so ....?

So how's Hope doing now? Well, I am so chuft that the seizures are being kept at bay. About every other day is completely seiZure free, and on the other days she tends to have less than ten of which are mainly so mild they are barely noticable.
She finally seems to be sleeping a bit better at night now she's in her big girl cot. She's taken to solids really well, today she had breakfast of yogurt and fruit, then a big serving of sweet potato for dinner.

Developmentally? In the beggining I was obsessed; constantly comparing her
Progress with the 'norm', to start with, she was where she should have been, up till about 8 weeks, then we gradually said goodbye to more and more of the normal milestones. She smiles, she laughs, she looks at things-sometimes. Her head is still a bit wobbly. But her control is improving. She is aware of her hands- I think, though she isn't reaching for things on a regular enough basis to say it's anything more than luck/excitement. She makes so many noises and really shouts sometimes. I do believe she will speak! I swear she says 'mum' a lot when she's having a moan! Even auntie Mary heArd her say it yesterday.

But omg, she's sooooo beautiful, super cute, has a lil personality, makes us all so happy and proud to call her our own. Now that the seizures are better under control, she's definitely coming on more, obviously she's way behind, but hopefully we're back on the road to progress further. Obviously we hope she continues to make progress, But really, so long as she keeps smiling, That's enough for me.

We went tenpin bowling earlier. There's not much more to say really. Chris won, As always. Jordan came 2nd, as she always does, max came third, and I came last- as I always do. My sacrafice as max's mum to let him not be last-lol . But in all honestly, I do find the whole experience boring and pointless (apart from the fact the others enjoy it).

Excuse the messiness of this post, like I said, we r in car. I'm blogging from iPhone, but couldn't not blog on such a day as her half birthday

To those who follow, and who's blogs I follow, I will b following your blogs, but for some reason can't post comments on phone :0$

Wooo hoo, Cornwall here we come. 3 hours down, 1 more to go!

Sammy send us some sunshine :0) mummy's bought a present for your garden already

Xxx

Monday, 27 July 2009

Sweet potato! :OP



Hope has been doing so well with her dinners of baby rice, so today I gave her baby rice for breakfast and made her some sweet potato for dinner. She ate it right up! To think I was so worried she wouldn't be able to eat easily. I feel so lucky that she's doing so well :O)
She doesn't open her mouth when she sees the spoon coming- largely because she can't really see the spoon! But as soon as she feels the spoon at her mouth she opens up. The top picture is from today. She doesn't even get in too much of a mess.
The second picture is from Saturday. Jordan and Max just love her so much. I know they are just over whelmed with the love they feel for her. She is so lucky to have them. They do know that Hope is extra 'special', but I think they just love her more for that.
Well, I called another ambulance on Saturday night. Actually, I suppose it was Sunday morning. Just before 3am, Hope woke and had a few seizures. The seizures weren't any different to the usual mild ones, but she never has them at this time, but then afterwards, she seemed like she couldn't breath properly. I hesitated, hoping that she'd be ok, then dialled 999 because I just didn't know what else to do (Chris wasn't here- but that's another story).
The lady on the phone stayed talking to me whilst I waited for the ambulance. She could tell Hope was distressed and struggling, so had me lay her on the floor and check her airways, then tilt her head to open her airways. The ambulance seemed to take ages, but during this time, Hope seemed to recover. After what seemed like a long time, but was only about 8 minutes, a 'first response' vehicle arrived (All the ambulances were out picking up drunk people-charming).
He was happy with Hope's stats and state, but said we could take her in if I wanted to. But she seemed ok so I stayed at home with her. Really scary stuff though :O( I had never had to call an ambulance for any of my kids in their lifes (touch wood), and now I've had to call 2 within a week :O( Hopefully that will be it for a very long time.
Xxx

Saturday, 25 July 2009

Tin foil and rainbows (vision therapy)







Yesterday we had a vistor from a lady from the visual impairment team. Funnily enough, our paths had crossed before; I supported a lad in my job as a special needs teaching assistant who was visually impaired (among other dificulties), and this lady advises us (as a school) how we can best meet his needs. I also went on a course ran by this lady a couple of years ago.
Anyway, she was really nice, and to me, most of the stuff she suggested was obvious; black and white, bright things, lights, different sounds, different materials etc. Then we all went under this HUGE piece of shiny tin foil/emergency blanket thing. She shined a torch in different places. I watched as Hope's attention was drawn towards these reflections of light on the shiny thing. BINGO!
So the kind lady left it for us. And we've been hanging out, shining lights for Hope under the shiny thing. It gets sooooooo hot under there after a few minutes, but Jordan-Amy likes going under there with H too. H throughly loves the experience. She likes the lights and the sound of the material.


Sadly our Borders book shop is closing down :O( On the plus side, I bagged some great bargains!
My biggest bargain being 'Rainbow in my room' which was £29.99 down to £1. Now, I really don't think it's worth the original price, but for a quid, well, it's fantastic. It is what it says on the box..just a piece of plastic that projects a beautiful rainbow. It looks really pretty on the ceiling, but this is no good for Hope cause I know she can't see it there. So we project it onto her bumper on the side of her cot, or even better, go under the shiny thing with it!
Yesterday was seizure free again. And today (touch wood) she's only had 2 spasms. She's still on 4.5mg of vigabatrin twice daily, so I'm pleased I haven't had to up the dose yet.
She's loving her food! Still on the boring ol' baby rice but she just eats it right up. Today she had 3 portions (3tsps baby rice+30 tsps milk). She would have eaten more too, but I want to increase gradually the amount she has otherwise she may just get really full and then sick it all up. Tomorrow, I'm going to make her some sweet potato.
must go, Hope is calling. She's being a very demanding princess today
Thanks for reading
Xxx

Wednesday, 22 July 2009

Solids! :O)









Hope is just 1 week short of being 6 months. I've managed to resist the temptation to start solids till now. It's hard to imagine that Jordan and Max started at 3 months, but that was what was recommended at the time. I suppose in the back of my mind, i've known that solids could present us with another issue. It's fairly common for special needs babies, especially those with similar issues with H, to have issues swallowing.
The original plan was to wait till she was exactly 6 months, but with the holidays coming up, and us planning on getting away next week, it may have been a tricky time to start her. So after a chat with my lovely friend Jess, who also happens to be a health visitor, I felt ready, and excited about weaning. For the past week or so, I'd been letting Honk try a few things from my finger-sweet things. She seemed to enjoy these.

So this evening, I made up one spoonful of baby rice with 10 spoonfuls of milk (as recommended on packet). It seemed to go quite thick, and I briefly considered adding more milk to make it runnier, but then just decided to give it a go. The words duck and water spring to mind! She was fantastic at it; smacking her lips, swallowing, wanting more. I fully expected her to just take a couple of mouthfuls and spit most of it out, but most of it stayed in her mouth and was swallowed effortlessly :O)
She cried when it was all gone, so I made up a bit more for her, which was also devoured!
My clever lil Honkey! Another bridge crossed! (I'll try and put the next bridge to the back of my mind-lumps are another issue all together).
I'm looking forward to getting her on all sorts of yummy things, but am planning on sticking to the rice for a week or so.

Jordan's memories

Since we're all in isolation because of the swine flu, we've been doing lots of over due tidying and sorting.



I had the kids sort through all of this year's school stuff they bought home on Friday. A lot of it will be for the recyling now, but we've chosen a few bits to put up on the kitchen wall, and l'll keep all their books.


I looked through their books with them.
I came across this in Jordan-amy's R.E book:

Remember our memories
_____________________

My memory is my baby brother Sam. I remember when my Uncle and my 2 Nannies slept over because my Mum and
Dad were in London at the hospital. Early in the morning on Christmas Day, we went to London to see Sam. When we got there it was bad news; Sam had died. I held him. That was the most I could do.

Isn't that sad? :0(
My poor kids. I wonder how this will effect them long term. Then the effect of having a special needs sister. They seem well adjusted and happy. I hope they always will be.

I said to Jordan I thought what she wrote about Sam was lovely. She said ' you know mum, I always say I have 2 brothers and 1 sister'.
'That's great Doll, you do' I said. But I'm so proud of her for that, cause I know myself that it would often be easier to say I had just 3 kids, without going into having
4 but only 3 with me. But that's my girl! She's such a strong person. I admire her, and just know she's gonna grow into a wonderful adult.

As for the swine flu.... Well, everyone here seems just fine. Max has been a little lethargic again, but as I type, Jordan and max are playing tennis on the wii.

I was contemplating stopping the tamiflu, and thinking that maybe they didn't have it afterall. But after speaking to a few other people, who have said their kids were back to their usual mischievous selves when on tamiflu, I will continue. I was also concerned that the meds may somehow affect their immunity to it if they are taking it if they don't have it, but after speaking to my lovely friend Jess (for over an hour an a half-lol. Hello jess:0). )she said it would actually give them some protection against it.

Hope slept from midnight till half 6 in her own bed again! She woke for a feed at half 6 and half 8, then we woke at 10am! The best sleep I have had in months. Possibly years!

After the big episode the other day I thought maybe she'd outgrown the meds already. But the day after (monday)she was seizure free again, then yesterday she only had 10 over 2 clusters, but what I did notice Is that one of the clusters (6)was really different. They were the kind described as 'salem salutes' where she lurched forward, as opposed to her usual 'myoclonic jerks'.

Today, she's only had 2 teensy/barely noticable myoclonic jerks. Touch wood!

Tuesday, 21 July 2009

Swine flu update: the calm before the storm?


I'll keep this brief cause not feeling too fantastic myself ....
Jordan and max not as bad as I expected-touch wood! Chris sent home from work because kids have it, so that's a bonus!
Hope not herself; really sleepy, not feeding much and being a bit sicky :0(

She slept really well in her bed last night. I loved it too, being face to face with her beautifulness

Love to you all xxx (non contageous kisses)

Monday, 20 July 2009

A big girl bed, and SWINE FLU!







As you can see, Hope's moses basket was getting a bit cramped. She certainly got her moneys worth out of it! So Mummy and Jordan decided it was time to build Hope's new bed today. Then Hope decided that actually she'd rather feed, so clever ol' Jordan (aged 9) built it!
Hope looks lost in, but it's beautful. We have pink giraffe bedding, and now she has room for her special toys too. But the best thing...it's a 'closer to you' so it's RIGHT next to my bed!
AND NOW FOR THE BAD NEWS! VERY BAD!
jORDAN AND MAX NOW HAVE SWINE FLU! Max has been poorly all day. This evening I had a call to say one of his classmates have been diagnosed. Max seemed to go downhill fast, so I called the doctors who went through his symptoms and then confirmed my fears. Just a couple of hours later, Jordan starting showing symptoms.
I have been SOOOOOO scared about this. It's been getting closer and closer for a couple of weeks, and I've been so worried. Worried for all of us, but especially my teensy princess.
Touch wood- she's not running a temperature of showing any signs (yet), but this could explain the unexplained seizures from yesterday. Because of Hope's vulnerability, she's being treated with tamiflu as a preventative. Though, as the nurse advised, it's probably too late for her to get off without catching it, but hopefully if it's caught early it will be less severe. :O(
I have a feeling it's gonna be a rough few days :O(
My poorly babies :O( I just want them all to be ok :O(
Chris is out now picking up the scrips (6 minutes paspt midnight)
Xxx



Evil seizure monster returns with avengence, 999 call, and ambulance trip to the hospital












Definitely spoke to soon! The evil seizure monster was obviously was just resting whilst getting more powerful. Yesterday morning, Hope had the mother of all seizures. Different to the other spasms we've become used to. The day before we'd had our first seizure free, but previously we were down to less than 10, of which were so mild, to the untrained eye they'd be unoticable.
But yesterday morning whilst having a massage, Hope's arms shot out powerfully and Hope screamed. Then again, and again...Usually her 'clusters' would come 10-20, 30 at the very worst back before we began medicating..But these weren't stopping. And Hope was distressed. She usually isn't bothered by them.
After about 15 minutes of non-stop spasms, I called the children's unit. They told me to call for an ambulance. So, Blue lights flashing, sirens blaring, an ambulance picked up my lil princess Plonkey. By the time they'd arrived, the seizure has passed, but they took her in anyway.
She was checked over; they were trying to find a reason for such a severe episode after being almost seizure free; infection, fever etc. Nothing could be determined, so Hope was kept in for the day under observation. In the evening, after not having anymore seizures during her stay, she was discharged. Phew!



Saturday, 18 July 2009

A seizure free day! Miracle or coincidence?

Well, I've waited till midnight to announce This great news. I didn't want to tempt fate by saying it earlier, but yes, Hope has not had a seizure all day.
So has the power of prayer had an effect? Or was it going to happen today anyway. I mean, we were nearly there, the day before she only had 6.
Well, I think it's nicer to go for the miracle :0)
Time will tell.
So thank you God, Jesus and Ruth!

Goodnight, God bless :0)

Xxx

Beautiful friends and a kind stranger







WARNING: This is probably gonna be a long one.

Firstly, doesn't Hope look soooooo cute in her lil baby Dior outfit? It was a gift from her SANDS Auntie Kelly, Uncle Paul, G, Angel Bradley and Aaron. I think she looks absolutely adorable!
Yesterday, Hope recieved a beautiful wooden toy in the post from another of her SANDS aunties; Rachel. She has an angel Joshua and also a son called James who has special needs. Rachel has been honest and truthful with me about the experience of bringing up a special needs child, and that I appreciate. It's also great to know that I could say things to her that might shock other people, but she'd understand. Sadly Rachel and her husband and son couldn't make the christening because young James was poorly and had been in contact with the dreaded swine flu!
In the parcel was an inspirational newspaper clipping (she likes sending me these, and I like recieving them) about a special needs child. And also a beautiful card, but inside were some beautiful quotes.
Here are a few of my favourites:
"If it were not HOPE, the heart would break" Thomas Fuller
"The supreme happiness of life is the conviction that we are loved" Victor Hugo
"HOPE is the thing with feathers,
that perches in the soul,
And sings without words,
And never stops at all" Emily Dickenson
And my favourite......
"Once you choose HOPE, anything is possible" Christopher Reeve
Now what a beautiful person that is, that takes the time to find those and write them!
And then, just now, another one of Hope's SANDS aunties; Hayley, messaged me to say she'd made a header for Hope's blog. I'm so chuft, she did this new background an' all. It's perfect and just so thoughtful and kind. Hayley and I have never met, but we have a special connection; she has an angel called Nathan, and now she's expecting again...Her lil baby is nicknamed sunshine, coincidently, my angel Sam, is nicknamed sunshine. A very sad coincidence though, it that Hayley's Sunshine, has the same condition my Sunshine did- CDH. I hope with all my heart she gets to keep this special lil man! Hayley my love, I am here for you, squeezing your hand very tightly,every step of the way!
What do all the above people all have in common? Well, they all had angel babies, but goegraphically, we are spread all across the UK, yet I count them all as very special friends. I met them all through the internet- on SANDS forum. Isn't the internet a wonderful thing. Of course, I wish none of us ever needed to be members on SANDS which is of course, undoubtably the saddest forum on the internet, but I am pleased to count these people as my friends!
And now for the stranger.....
We took Jordan and Max swimming this morning. I sat with Hope in the spectator area. A lady sat next to us. Like most people do when there's a cute baby about, she was drawn and started looking at Hope and talking to me..the usual...'how cute'...'how old?' then 'Can she see?'.
'No' I replied.
Then Chris came along and told me I was sat in the wrong area, so I said goodbye to the stranger.
Walking away, I felt winded. Gutted. Upset that it was that obvious that my baby wasn't normal.
You seee, I know Hope is special, and I'm not at all embarassed about that, but to me, she is a baby first and foremost, the disability comes second. And I don't tend to highlight it to people who don't know her. I just prefer to enjoy the compliments anout how cute and pretty she is. There's no need for them to feel sorry for us, so I don't bother telling them of her difficulties. There's no need. No point. So I was sad, that it was so obvious that Hope wasn't 'normal' already (I say already, cause I knew the day would come).
Anyway, after swimming, we were waiting for Jordan and Max to come out of the changing rooms, and this stranger appeared. She'd come to find us. She said something like 'I hope you don't find this strange, but I believe that Jesus wants to heal this baby. Can I pray for her?'
Now, obviously this isn't something that happens everyday, but I sensed this lady was kind, and thought we had nothing to lose. So she placed her hand on Hope and prayed for healing.
I, of course Hope it works!
I said to the lady that I wish I had such a strong faith, then explained how the faith that I used to have has taken a real rocking these past few years.
She understood. Only time will tell I guess. But even so, she was a lovely lady. I gave her the blog address so she can keep check on Hope. She was a lovely person. So if you are reading...Thank you Ruth!
So today I feel happy. Happy that the world is full of such beautiful people!

Friday, 17 July 2009

School's out!











Hurrah! It's the summer holidays. No more early mornings, no more uniforms, lunchboxes, homework etc. And we get to be TOGETHER! 6 lovely weeks of it :O)








Today our lovely health visitor came for the very last time. We have been blessed to have this lady for the past 5 and a half months. She's been so supportive through everything we've been through; she's encouraged us to continue breastfeeding when Hope's weight has been so low it's been off the charts, and when giving a bottle at points seemed the easier option, she's come round to weigh Hope and measure her head circumference weekly, then fortnightly, she's made tons of phone calls on our behalf, and listened to my concerns. And what's more important, is all this has been done at home. Anyone else reading this who has a special needs child will understand why I hate baby clinic, and why it is difficult to be around 'normal' babies.




Hope is perfect to me, and when we are at home, I don't see her as anything other than her cute lil self who I wouldn't change for the world. But it's undeniably hard seeing other babies, the same age doing the normal stuff that everyone just takes for granted. I hate it when people look at her and ask how old she is, expecting me to say she's a few weeks old, when actually she's nearly 6 months old, yet size wise and developmentally she's nowhere near.




But our health visitor understood this was an issue, and despite my offers to attend the dreaded clinic, always came to us.








The last few times she had seen Hope, Hope wasn't herself at all. She was an empty shell almost, the seizures taking over her lil personality and regressing her back to a newborn state.








Hope had been fab all morning; full of laughs and smiles. So I was willing her to stay awake so that the health visitor could see how much better she was now we were controlling the seizures.




Hope wasn't at her most cheery, but the health visitor was impressed with her progress, and couldn't believe how much H had grown up since she last saw her (a fortnight ago), and commented on her improved head control.








She also thought Hope was looking chubby. Something I don't think she or I ever imagined. Hope's weight has been an issue ever since she arrived; weighing in at a boney 4lbs 14oz at 37 weeks gestation, then dropping to 4lbs 8oz and taking over a month to even regain her birth weight. For 5 whole months we've been trying to get Hope's weight, not within the normal range, but ONTO the chart. She's always been below the 0.4th centile. Until a couple of weeks ago that is, when to our amazement Hope made it onto the 0.4th line. Well today, the lil chubber monster weighs 12lbs 4oz (that's 5.5 kg), admitedly that's not huge for a nearly 6 month old baby, but she's actually made it to the 2nd percentile line! :O)








Hope bought a gift for the lovely health visitor, and we wrote her a card. I put the blog address in so she can keep up to date on her. So if you are reading ...Hello, and thank you again...For everything!








Auntie Mary came round too today, with some naughty but nice cakes. She was also surprised at hpw alert and happy Hope was.








I feel like although Hope is way behind, we are back on the track again, and can start building again. At 8 weeks, Hope was acting like an 8 week old baby, but then something happened, and she wasn't. She wasn't even turning her head to sound, nevermind smiling, and rolling. Then the nasty seizure monster showed up and our days were spend counting seizures and worrying, then once she was diagnosed, we started the meds which knocked her out so much, but now, she's tolerating the meds, and probably almost back to where we were before it all starting going wrong. So hopefully, we can continue to progress from here. But for me, the one thing I wished for, was that Hope could smile; to show me she's happy, and that she knows she is loved. Her smile melts my heart, and makes me a very happy proud Mummy.




Thursday, 16 July 2009

RIP Sam Barnes

Ok, so this is gonna be not so much about Hope, but it's dominated my thoughts today....
When my Sam died, I joined a forum called SANDS (still birth and neonatal death society). I gained so much comfort knowing I wasn't alone, being able to talk to people who REALLY understood. One of the ladies who helped me in the early pain filled days and long nights was a lady called sam. She'd lost a lil boy called Alex in 04. She had older sons too. She Was a lovely kindhearted lady who was 'there' for so many people.
In June this year, Sam was blessed with another son, Shay. This morning, through
Facebook and sands, I discover that Sam has died. Her own son has logged onto facebook and changed her status to tell us all that his mum sadly passed away yesterday.

So today I am struggling to understand how something so sad can happen. No mother should have to bury their baby. I know that is a pain that never goes away, just one you learn to live with. So for Sam to be blessed with another baby boy, then herself be snatched away from him, leaving behind other children and a husband seems the cruelest twist of fate possible. I am baffled as to how a god could let so much tragedy happen to one family.

If you pray, then please pray for the Barnes family.

Sam, you will be missed by so many. May you and your beautiful Angel Alex have the sweetest of cuddles tonight. Please kiss and cuddle my Sammy for me, and look after all those special angel babies.

Hope and I did have quite a good morning. We had some time on the activity mat, then some bumbo time playing with her new toy from Jess and family. She did hit it a few times, but I am hard to please; she'll have to do it a few more times before I put it down to anything more than luck combined with excitement.
After we heard about Sam, I've been pretty miserable and this has had an effect on Hope who has also been miserable. We've mainly spent rest of the day cuddling and feeding on the sofa. She got in a grump earlier and despite lack of teeth, bit me really hard- Ouch! I dread teeth.
On the seizure front: just 3 barely noticable this morning, then 7 mild tonight at ten pm. I am noticing that these are happening before her meds, which probably means it's because the meds are wearing off. She's currently on 4.5ml twice daily of vigabatrin (which are 250mg sachets diluted in 10ml).

Night all
Rip sam
Xxx

Wednesday, 15 July 2009

Almost a seizure free day

As the title says! I have been touching wood all day hoping that it would last. We got so close. It was 9pm before the seizures struck. There were 15. All pretty mild, but nevertheless seizures. Still, I am a happy mummy. Happy because I can see the meds are working. Happy because I believe we may have seizure free days sometime in the near future- hopefully!

Hope went to her first sports day today. She shared herself out, taking it in turns to watch her big sister and big big brother. Jordan came first in the beanbag on head race, and max came first in the hockey race and second in the running race.


We had a lovely evening tonight. It was Jordan and max's school performance of Bugsy Malone. I'm sure hope enjoyed it too! Though she couldn't see what was going on, it was really loud, great singing, and a great atmosphere which I'm sure she picked up on.

On a less positive note, Jordan and Max bought home a letter from school today. Printed on red paper. There are cases of swine flu! It seems to be everywhere. I am worried. Worried for all of us. But especially the impact this might have on my littlest princess. Part of me would rather we all just got it done and over so I can stop fearing it, and whilst the strain is weaker.

Hope has been sleeping a bit better since the weekend. At Trisha's she slept 6 hours each night, same on Monday, then 4 hours last night. I have felt like a new woman! And tonight I sleep on my brand new memory foam matress. I swear my back is completely done in from sitting up in bed at night feeding the honk hour after hour, so I'm really hoping this new mattress will improve the situation.

Night all xxx

Tuesday, 14 July 2009

A plonkey princess party and christening!



































































What a fabulous weekend! The planning , effort and excitement that went into this day felt more like a wedding than a baptism. We were joined by family and some very special friends!
My dearest auntie trisha offered to host the party at her beautiful home, The Old Rectory in sunny Milton Keynes . The forecast predicted rain so a marque was hired. To my amazement auntie trish also had a fab sign made (above).

The church service was beautiful and very personal - thanks to a very special vicar named Bev.
The hymns we selected by us; be still (we had this at our wedding and sam's funeral), I am here lord (can't remember the exact connection but I liked this. Then bev pointed out it's connection to Samuel, then I liked it even more). And finally peace perfect peace (this was chosen by Jordan-amy, mainly for thev last verse ; HOPE PERFECT HOPE... Is the gift .... Perfect choice I'm sure you all agree. Well done Dolly! )


A candle burned during the service for each of our beautiful children; Jordan Max, Sam and Hope.

My beautiful lil cousin George read the poem 'Welcome to Holland' by emily perl Kingsley. If you hAven't already read this, please follow the link on the side of this pAge. It's such a beautiful, heartwarming and truthful poem about the experience of raising a disabled child.
Hope's godparents and siblings pledged their support and love. She is blessed with 4 god mummies and 1 god daddy all of whom are our closest friends and have 'been there' for us when we needed them, and my auntie trisha, who is also my god mother, and so much more- one fab lovely person that we love very much!

The baptism at the font followed. Of which I don't have any photos, but hopefully I'll get some from lovely friends

Then Jordan, Max and my lovely cousin Harry went to the front of the church where Harry read the poem 'the candle of hope'. Max blew out the candles (with some difficulty lol) at the relevant places, then Jordan relit the candles using the candle of hope. I'll include this poem because it's less likely that you'll have seen it before.
The candle of Hope
Four candles slowly burned
The ambience was so soft one could almost hear them talking
The first candle said "I am Peace"
"The world is so full of anger and fighting that nobody can keep me alight"
Then the candle of peace went out completely.
The the second candle said"I am Faith"
"I am no longer indispensableIt does not make any sense that I stay awake one moment longer."
Then a breeze softly blew out Faith's flame.
Sadly the third candle began to speak"I am Love"
"People don't understand my importance,So they put me aside.
They even forget to love nearest to them.
I don't have the strength to stay alight"
And waiting no longer the candle of Love went out.
A child entered the room where the candles were
And saw that three of the candles were unlit.
"Why are you not burning?" said the child"You are supposed to stay alight until the very end"
And the child was frightened and began to cry.
The the fourth candle said"Don't be afraid. I am hope,And while I am burning we can light the other candles"
With shining eyes the child took the candle of HopeAnd lit the other candles.
The flame of Hope should never go out from your life,And with Hope each of us can have a lifeWith Peace, Faith and Love.

Hope slept throughout- lol! She only awoke to the applause at the end of the service, and then only for a second.

Of course, she looked Gorgeous in her gown bought by nanny.

When we left the church, it was raining. We all headed toward the marque for our lunch of pork, stuffing and apple sauce baps, and beef and horseradish baps. For the children (of which there were many) there were marmite, chocolate spread Nd jam soilders, teddy shaped crisps, jelly, and lots of cakes including ones with sugar paper photos of hope and honks on (photo above).
The cake made by a talented lady calledAndrea, a gift from family friends Ann and Ray, was amazing. Featuring a honk, yet at same time still pretty and girly(photo above). Not to mention moist and scrummy!

The rain never came to anything, and we were blessed with beautiful hot sunshine and a cloud free sky. The children played with the activites, jumped on the trampoline and swam in the pool.
I think it's fair to say; a fabulous day was had by all!

Something amazing happened too: the whole day was seizure free! ( sadly she did have 12 mild ones during the evening -all in one cluster. But even so, this is the best yet since the epilepsy treatment began).
And then for the prezzies :O) Someone said 'oh, it must be like christmas', but of course for us, Christmas isn't the most exciting time :O( But WOW- great gifts! She got the traditional curl, tooth pots, frames, money, clothes, along with her first DIAMOND in an engraved silver bracelet ~(photo above), a beautiful first year clock, a baby DIOR outfit, a personalised jewellery box, and the best toy EVER! (will feature in future posts).
Thank you for indulging me in this long post. It really was such a special day!
Xxx

Saturday, 11 July 2009

So tired

I used to be able to count on 4 hours sleep; from midnight till 4am. Not much, I know, but I'd got used to it, and could function prettty well. But now even that seems to have gone out the window. I seem to be getting an hour or 2 at a time now, and it's just not enough. I feel like a zombie! I don't know whether there's any connection between hope's various issues and lack of sleep- after all, really 4 hours isn't very long.
So that's 5 and a half months now with no more than 4 hours undisturbed sleep. Chris convieniently doesn't even wake up.
Moan over - lol xxx

Thursday, 9 July 2009

Infantile spasms

A lazy post today. . Very tired Mummy here. Hope got up at 3:30am and pretty much stayed up from then on until it was official rise and time time 7:30 in the Matthews household.
Hope has made up for it and been quite sleepy all day. She's asleep now. Chris has gone fishing. Jordan and Max are in the garden kicking a ball whilst they wait for their truffle mixture to 'solidify'. I just know these chocolate truffles are going to be far to nice for me to resist .

So for those of you who don't know, this is what infantile spasms are (courtesy of the Internet ):

Infantile spasms are a type of epilepsy with a characteristic age of onset (typical age when seizures start), pattern of seizures and electroencephalogram (EEG). This means that it is an ‘electroclinical epileptic syndrome’.

They can also be called ‘salaam spasms’, because the appearance of the seizures is like a bowing forwards or backwards movement, or ‘West syndrome’ after Dr West who first described the condition in his own four month old son in 1841.

This type of epilepsy occurs in about one in 3000 children. Every year in the UK about 350-400 children will develop West syndrome

Symptoms
In nine out of 10 children with the condition, infantile spasms occur in the first year of life, typically between three and eight months old. Often, to begin with, the attacks are brief, infrequent and not typical of the syndrome, so it is quite common for the diagnosis to be made late. Frequently, because of the pattern of attacks and the cry that a child gives during or after an attack, they are initially thought to be colic.

The typical pattern is of a sudden flexion (bending forward) in a tonic (stiffening) fashion of the body, arms and legs. Sometimes, however, the episodes are extensor (arching). Usually, they are symmetrical (affecting both sides equally) but sometimes one side is affected more than the other.

Typically, each episode lasts just one or two seconds, there is then a pause for a few seconds followed by a further spasm. While single spasms may happen, infantile spasms usually happen in ‘runs’ or ‘clusters’ of several in a row.

It is common for babies who have infantile spasms to become irritable and for their development to slow up or even to go backwards until the spasms are controlled. These infants can also behave as if they cannot see, but this improves once the spasms are controlled and the EEG has improved.

Diagnosis
The diagnosis of infantile spasms is made by a combination of the typical features with a typical EEG. The EEG shows a very disorganised pattern termed ‘hypsarrhythmia’. The EEG is always abnormal in children with West syndrome but sometimes this abnormality is seen only during sleep.

Infantile spasms, like many other ‘electroclinical syndromes’, have lots of different causes. A particular cause will be found in seven or eight children out of every 10 children with West syndrome.

Most children with infantile spasms will need a number of tests (EEG, brain scans, blood tests, urine tests and, sometimes, spinal fluid and other tests) in order to try to identify the underlying cause.

Treatment
The main treatments used are steroids or vigabatrin (Sabril), Nitrazepam and sodium valproate (Epilim), may also be used. The type of steroids used are prednisolone or tetracosactide. Steroids must be used carefully as this treatment may cause some unpleasant side effects.

Prognosis (outlook)
In some children, infantile spasms respond easily to treatment, whereas in others they remain very resistant. Most children unfortunately go on to have other kinds of seizures in later childhood including an epilepsy syndrome called the Lennox-Gastaut syndrome. Most children also have learning difficulties. The prognosis for infantile spasms in both these respects is largely dependent on the underlying cause of the condition.

Hope is now on 4mls of vigabatrin twice daily. We've had to increase the dose gradually. Despite now being on almost her full dose she had over 60 yesterday :0(. But I also noted (yes literally noted- have to keep record of seizures, behaviour etc) that hope was really with it; her eyes seemed to be working. Turning to sounds. Smiling and laughing and chatty, looking at toys, sitting up with support - probably the nest she's ever been developmentally.

Earlier today I almost allowed allowed myself to believe that we might have a seizure free day. It got to 2:20pm before they struck. But then they really struck. 19 of the evil things all in one cluster. It's now just gone 6 and touch wood there haven't been anymore yet. But, hope hasn't even smiled yet today. I can see her eyes aren't working well again and I wonder what's going on in my lil girl's brain. :0(

Roll on bedtime. Only another 5 hours to go xxx

Wednesday, 8 July 2009

3 years ago today...

.... was one of the happiest days of my life. I'm a but sad to say that it took 2 cards in the post to remind me. I think it's very sad that after only 3 years we have both forgotten our wedding anniversary .
I guess it's cause we have other things on our minds.
3 years isn't really a very long time, but it seems like a lifetime ago. Back then, we were so happy. Life was bliss . We had it all? We'd been together for 7 years already; had 2 beautiful healthy children, had finally settled into a home we felt we wanted to stay in, had various pets a nice car...etc
But I wanted more. The icing on the cake! That's what Sam was going to be. Perhaps i was greedy. Perhaps I should have seen how lucky we already were. Exactly 15 months after our happy wedding day began our run of not so happy. So naive we were going for the scan to find out whether we were having a boy or girl. Not for one second did I imagine that there would be anything wrong. So wrong. That day, we were told sam had only a 50% chance of surviving. This went down to 5%. Despite doing everything that could be done, our sam died- on Christmas day! I have never ever hurt so much. Some say that time's a healer...but I don't think those that say it have ever buried a child! Some said at least sam wasn't suffering, he could have been disabled. But to me, this was of no compensation. We'd have kept sam at any cost.
Hope was never a replacement! But I still longed to bring another baby into the world. She was always Hope. Before we knew she was a girl, I knew there was hope: Hope for happier times ahead.

We hoped this next child didn't have cdh too, but at the same time, I knew that if this child had cdh we'd owe the same chance at life as we gave to Sam.
Exactly a year later, we were at the same hospital being told there was something wrong. Again! But something different. Did we ever question bringing HOpe into the world? I didn't. I know people did. The doctors, my mum (she was thinking of the impact a disabled child would have on us), I think chris did too, but I also know he'll always support me- whatever my decision had been.

I didn't really feel there was any option. Yes, if I could have chosen to have a healthy baby I would have. But I wasn't given that choice. I was given the option to opt out... I COULD NOT bury another baby. I Would not! I knew as a family, we couldn't do that. Jordan and Max couldn't have done that either. So you see, we didn't really have a choice.
We definitely made the right decision. I have never questioned that. I do wonder why though.... Is it because we'd have kept sam at all costs? Is it because we are a special family? Is it because I was greedy? Is it because God only sends us what he knows we can deal with? I'll certainly have some questions when I get to heaven.

So, it's been a rough couple of years. If I could turn back time to 3 years ago, would I? No. It would be nice to feel that pure happiness again. You see for us, we'll always be one man down. There will always be a Sam shaped hole, an empty place at the table, a name missing from cards people send us. But if we could go back, and have the choice to take a different path, I'd take the same one. I am proud to be a mum of 4. I'm sorry that we've had so much sadness, especially for Jordan and Max. But we were blessed to have Sam, even for the short time he was here, and we are now blessed with Hope. Sometimes we are sad for the 'normal' life she may not lead, sometimes I worry for the uncertain future, but mainly I am greatful for our special child, entrusted to us. It is my honour to be her mum. It is an honour to be mummy to Jordan, max and sam. And it my honour to be married to Chris. There is noone in the world I can imagine walking this path with!
So I suppose today is a bit of a wake up call- for both of us. Looks like we've forgotten eachother a bit. Understandable? Yes. Acceptable? No!
But then we have a lifetime to make up for it - starting with a take away curry tonight :0) xxx
Here's to the future Mr Matthews. Hopefully our luck is on the change. A lottery win maybe?

Tuesday, 7 July 2009

Just back from today's appointment with Dr Ch

Hope is (as you can see) also impressed by her own progress and the positive news we received :O)

We weren't really expecting any news today. Today's appointment was merely a review of how the meds were affecting Hope's seizures. I was slightly worried that there May have been new bombshells- thankfully there weren't !

I told him that I felt we had got the old Hope back and that the seizures were massively reduced (we'd only had 8 teensy seizures at that point compared to the 200 that they had escalated to). He hope's that as we increase the dose H will be seizure free! This is fab news because last time he thought that we may have trouble controlling them. Obviously there are no guarantees though.

Dr Ch went onto give her an examination; he was impressed with her improved tone, her interactions, smiles and protests. He said you wouldn't know to look at her that there was anything wrong. He said last time he saw her he was 'very worried' for her. Before handing her back he gave her a lil kiss on the head. Told you he was a special doctor!

He then went on to give Chris a lesson on the brain and epilepsy. I was pleased he did because I don't think Chris really understands what's happening and why, which really frustrates me because I know so much- bordering on obsessed I suppose, but whenever I try to explain something to him , it feels as though I'm talking to a brick wall. It's not that he doesn't care, he's just not interested in the Ins and outs of it all.

As usual I had my list of various questions to ask. I asked whether the EEG showed patterns of hypsaryhthma (sp?) This would have meant West Syndrome . The EEG didn't but did show chaotic activity. He said it could develop, but the way she's improving and responding to the meds, he hopes that West Syndrome could be kept at bay :0) and that for now, Hope has the 'infantile spasms' variety of epilepsy.

He said that some children like Hope he sees can go on to lead fairly normal lives, but that some have big problems. I am being realistic when I say that I don't think Hope will lead a 'normal' life...I think it's safer to think like that. For me it is. Of course I HOPE I am wrong. I feel Dr Ch is also more hopeful after seeing her today; to think 2 weeks ago he said increased risk of 'spasticidy' and today he's talking about the possibility that we may get these seizures under control and Therefore improve her prognosis dramatically. Like me, he's of the thinking that ' only time will tell' . I like that saying, because to me, it means possibilites. There's HOPE!

Sunday, 5 July 2009

Planning the Plonkey party







Today Auntie Trisha came down to Swindon so that we could finalise the details of the party. I am so excited. It really is going to be a fab day. Auntie Trisha kindly offered to host the after baptism party at her house, which is huge, has loadsa space for the kids to run around, and a lovely pool. So everything crossed the weather will be good. We're having a tea party because there are going to be lots of children there. A great excuse for eating lots of yummy cakes :O)






We discussed the cakes, the guests, and also the music we're going to have-All Honkey special songs. When I read my list to Trish, Mum and Nan, Mum and Trish got all choked up then upset. I'm starting to wonder why I'm not upset. I suppose I should be more upset? Perhaps I'm numb? In denial? ~But I don't really think so. I guess maybe because I have been through worse, or maybe it's because Hope does make me so happy, yes I do worry for her...Sometimes I wonder what the future holds for Hope, but also for us as a family. But then I quickly put away those thoughts and focus on today. I want to enjoy her. I don't want to be missing out on all that is good by worrying about a future that may not be so bright. We'll cross those bridges if and when we need to.






Hope is on 3mls of vigabatrin twice daily now. It's making her more sleepy than normal, but the seizures are increasing. 60 today :O( I wonder if we'll ever get to have a seizure free day. I hope so! I suppose one of the main things I've noticed since she's been on the meds is that she's alert again. Though she is far from where a 'normal' 5 month old baby might be (playing with toys), she does seem to like her new toy; A Lamaze Noisy dog that is more affectionately known as 'Plonky puppy Waaa'( Max got Hope to name it, she said WAAA') . I like it too- It smells delicious. Hope smiles and does her funny laugh at it when you make it make noises. She really looks at it too. Not many things get her attention.






Hope is just having a 4oz bottle of infatrini with Papa. It's the first bottle she's had all day and I'm quite glad of the break. But it's nice that now she has finally made the 0.4th centile we can stop giving her top-ups. I'm pretty convinced that the infatrini high cal made no difference to her weight gain anyway, all it meant is she fed less from me. So it's 11pm and I am thinking early night tonight, though I may end up paying for it. Generally we stay up till midnight with her, then she sleeps for 4 hours. Occasionally, especially since we started the meds, she'll sleep longer. It's funny what you get used to. 4 hours would never have been enough in the past.
Perhaps I am supermum-lol Jordan seems to think so. And Max thinks H is superbaby- he's right there!

Saturday, 4 July 2009

Why am I blogging for a baby?

So many reasons...
....Sadly in her 5 months she's been here and the months before she was born, so much has happened. If only it was a case of eat, sleep, poo, sick etc, followed by the usual milestones; smiles, coos, laughs, rolls, sit.... If only things were that straight forward!

... This blog is therapy for me. Sometimes they may just be ramblings. Othertimes, my worries, hope's achievements. A beautiful record of my beautiful baby. A baby record book for the 21st century!

...I am so very proud of my plonky princess and want the whole world to know about her!

...this blog is for Hope's many special aunties who have followed her story on sands and or facebook. Whose support has meant more than they'll ever know.

....this blog is for other mummies who may find themselves walking an unfamiliar, unchosen path. I was and still am privelidged enough to have followed a blog about a baby called jude. Jude is a few months older than Honk, but with similar diagnosis and prognosis. His mom blogged dàily; the highs and lows. Like JUde, hope was blessed with a good start, and at about 3 months began having seizures. If it wasn't for this blog, I may not have even recognised honk's seizures. I feel that although the path Im on is new, I'm slightly better prepared for the journey thanks to jude's mum. Perhaps then I can be the one to show someone else the way! By the way, though I said this wasn't a path I chose, if someone said they'd show me how to go back to the start and chose another path, I wouldn't!

Since posting a link to this site earlier to my friends, i have had a few messages asking if they'd mind if they share H's site with their friends. Some purely because they think we're inspirational/strong/ that this is a blog of hope ...the strength of the human spirit...a mother's love...etc
2 people just tonight have asked me if they can share with friends who are midwives. ABSOLUTELY. Please do. If someone can learn from this site, all the better. Like i said to them; you never know, doctors may even end up reading it - and may learn something from a mother's perspective.

I do also hope that one day, hope will be able to read about her life . If not, mummy will read it to u princess!

So if you are already a Honkey follower, thank you for your continued love and support.
If you are new, thank you for coming. Thank you all for joining us on this very special journey.

Hope's christening dress has arrived
















These are not her christening dresses. You'll have to wait and see, but I can tell you, it is beautiful. We were fortunate enough to have had a lady bring round her supplies so we could try in the comfort of home-though Honk wasn't overly impressed. I was sorely tempted by a couple of these dresses, but dismissed them on the basis that a) it didn't come with a bonnet, or b) comfort/or rather lack of it. Yes some of the dresses were fabulous, but if next Saturday is going to be as hot as it has been, then Hope wouldn't be comfy at all. Her dress is beautiful, tradional, and practical. Bought for her my Nanny-not cheap, but worth every penny. Thanks Mum. Though H is baby number 4, this is the first time one of the babies will be wearing a gown. Jordan was 2 and a half, and Max 18 months at their joint christening, so too big for gowns, and poor lil Sammy only had a nappy and lots of wires in his incubator baptism :O(

Today I have upped Honk's dose of Vigabatrin to 3mls. It's taken it's toll. She's irritable, lost her appitite and sleepy. But she should be on the full dose of 6mls twice daily by now. She seemed to have been tolerating the 2ml dose well, but the seizures had been creeping back up, suggesting it was time to up the dosage. Fingers crossed that this will be the suitable med for her, at least until she's big enough to go onto Depokate.

Going completely off track, now I've started this blog, I'm pondering about setting blogs up for J and M too (Sam already has his own site). I'm thinking I could record their achievements and history, and then perhaps one day hand them over to them so they can blog theirselves. Mind you, Doll (J) would be more than capable of doing that herself now- but then I'd never get the laptop-it's bad enough already! Currently, I am resisting Doll's nagging that she NEEDS facebook.
Much love from Me and Princess Plonk xxx

Friday, 3 July 2009

Testing

Apparently I can blog from my iPhone . So here I am in garden....I'll be impressed if it works. Everything crossed xxx

Hope has epilepsy :O(

It's not that Id ever choose to get off this rollercoaster we are on, but sometimes I wish it wasn't always big dips and so damn scary.

So in my last post, I said that Hope has started having seizures, and that we were waiting for an EEG. Well 2 weeks had passed and still no EEG. The seizures escalated, and were becoming stronger. We went from having zero, to 121 on Wednesday 17th June, so on Thursday morning by 9.05 she'd had 36, of which some were really strong and causing Hope to hold her breath and go red in the face, so I decided to call the hospital. In our last visit with Dr.Z he'd said he'd arrange 'open access' so we could just ring the unit and let them know I was bringing her in. Much to my amazement, access was denied. Dr Z hadn't arranged access. Nor had he arranged an EEG-still. He said 'we need to rule out that these episodes are not colic or reflux'. AS IF I'D CONFUSE SEIZURES FOR COLIC! Anyway, he said he would arranged access.

Over the weekend Hope had 200+ seizures each day. Her little personality seemed to have almost vanished too. No smiles, or laughs, not even turning her head to my voice, pretty much like a newborn again. On Monday, Hope was due at the hospital for some bloodtests, but I knew that I wasn't leaving until I'd had her seen, until someone listened to me and took my concerns seriously. I asked to see Dr. Ch. The frosty nurse said he probably wouldn't be able to just come and see us, but my thinking was aim high (he's the paediatric neurologist), but I'd have settled with her at least being seen.Dr Ch agreed to come and see Hope, though I did have to wait a couple of hours because he was in a clinic in another hospital. He was worth the wait. He took us into a little room, and listened to me through my tears. He said 'please don't cry Mum'. He even offered me a cup of tea. He then watched intently the video recording of Hope's seizures. Of course, doctors are busy people; he had a meeting, but promised to come back in half hour, telling me to go and get something to eat and apologising for keeping us waiting around.When we met the next time, he'd arranged an EEG-just like that.The same day. Straight away! Hope had 23 electrodes stuck to her head for 20 minutes, and I watched the machine scribble across the paper. CHAOS! Not how a normal EEG should look. I knew that.Dr Ch collected us from the EEG and walked us to his consulting room where he broke the news. Well that's not strictly true; he said 'very abnormal brain activity, abnormal EEG'.'Epilepsy?' I asked.'You took the words from me Mum'.I think he's probably used to parents sobbing at this news, i was gutted, but this wasn't really new news to me. I knew. He confirmed. I felt slightly relieved in a way- that I'd been heard.We talked about the prognosis, the fact that Hope's epilepsy is severe, the fact that the seizues will likely evolve over time, that it's difficult to give the right meds to one so young and small... he asked me if I had a medical background-lol. Then told me I was well read. A compliment of sorts I guess, but I see knowledge as power, and am not a subscriber to the 'ignorance is bliss' way of thinking.

Vigabatrin seemed the best drug option for her; despite the fact in causes visual impairment in 40% of those who take it, but this is better than further regression, constant seizures and brain damage caused by them. Dr Ch, then took me to meet his secretary, who I could call anytime and he'd call me back within an hour. He handed me some leaflets, and aftter a very long day we left the hospital. NUMB!We began the meds the next day. As I read all the listed side effects, and the fact that I could not dispose of the medicine through the household water supply, I feared giving Hope her first dose.Apart from sleeping 23 hours out of 24, she seemed ok. The seizues had pretty much stopped, but at a high cost. Concerned that Hope wasn't even feeding enough I called Dr Ch. We went to see him the next day and decided to reduce the dose, and build her up gradually on it.Though we are yet to have a seizure free day, they are much less frequent, and to the untrained eye, not even noticable. And I am getting her back again. Yes she's delayed. She went back to newborn state, but she's smiling again, looking at me, laughing a little. We're working on the rest! We have also seen an ophthalmologist who confirmed that she is visually impaired, but to what extent is not clear.Nor is this necessarily permanent.

What's in a name?




Well, I feel I ought to explain why Hope is mainly called Honk or Honkey plonk. Though it may not seem the nicest of names, it is meant with much love and affection. It began at 12 weeks into the pregnancy. When we told Jordan and Max we were pregnant with Sam (before we knew he was a boy or poorly, they named him 'Squid' after Squidward from Spongebob squarepants. So when we told them we were pregnant again, they felt obliged to name the baby again. A Honk, incase you don't know, is a flanimal 'Hagen Splurg-Klanger- Moley squit that sleeps all day, until for no reason it makes the loudest noise on the planet causing its nose to trumpet upto fifty times its normal size. It then falls to the floor exhausted and falls fast asleep' -as described by Ricky Gervais in his book 'Flanimals'

And so from there evolved other silly names such as Honkey Plonk, Honki tonk, Plonkers etc.
She does of course have a real name, though her big big brother Max has yet to call her by it. He ALWAYS calls her Honk, and has NEVER called her Hope.

Hope- I don't feel I really chose her name, rather that it was chosen..given! We were originally told it looked as though she was a boy (at 13 weeks), yet I was pretty certain she wasn't because I had 2 very clear dreams about a little girl called Hope. So when we were told that the baby was indeed a girl, I was like 'Oh, well, that's Hope then!'. Obviously it is a perfect name; She was our Hope, hope for a brighter happier future, and then when things starting going wrong, we hoped that she'd be ok, that we would get to bring this baby home, that she'd prove the doctors who said she shouldn't be born wrong.

Olivia- that's her middle name. It is a way of naming her after her big angel brother who's middle name is Oliver.