Today I am 8 months old! Mummy, Papa, Jordan and Max think I'm the cutest baby in the world! I have to admit; I do have the lovliest chubby cheeks and cute chunky thighs. My hair style is a source of amusement, but I'm working on it. I now weigh 7kg which is a massive achievement for me; for so long I wasn't even on the growth charts. But now I'm storming my way up them, and am now on the 9th centile. Unfortunately, my head still hasn't made it onto the charts at a teensy 40cm. Shame they don't measure it round my cheeks :0) I still have my baby blue eyes. With eyelashes some can only dream of! All curled. No mascara required.
Some might say I am rather spoilt... You see I'm not one of those babies who's content amusing themselves. If I'm awake, I need holding, cuddling, feeding or entertaining. Mummy still hasn't left me. Not even with Daddy. We are almost one person. I am mummy's little helper. We do jobs around the house together- me in my babasling.
I'm still on the mumma milk whenever I ask, but have taken to solids really well, and can now even manage lumps and the odd bit of cake or chocolate. My favourite foods are; sweet potato, milky bar, roast dinner and yogurts.
My very best thing to do is have a bath. Especially with mummy. I love it when she holds just my head, so that my body floats, and I kick and splash and wiggle my little body around. I always have a good scream when Daddy gets me out. I also love hanging out with my big sis and my big big bro. Last night we all laid on my mat and were putting our legs up in the air. I was shouting my head off. I love having no nappy on! And thoroughly enjoy a full body massage by mummy including this little piggy. I enjoy doing 'row row row the boat' and mummy's 'ahhh-rooo' rocking.
My favourite toys are my storytime bear, my plonky puppy wa and anything else that's really loud.
I do really like the sound of my own voice and can make some really loud noises. Right now, I'm having a poo. I'm not very lady like in that department and always grunt whilst doing them :0)
Sometimes, I worry mummy by sleeping too much. But then other days I make up for it by only sleeping for 1-2 hours all night.
I can now roll from my front to my back- that's largely because I hate being on my front. My head control is coming along. Somedays it's better than other days. I still can't lift it when I'm on my front, but I'm less wobbly when mummy holds me upright now. On a good day, I can sit in my bumbo seat, or even go in my door bouncer for a few minutes, so long as someone is there to support me incase my head flops back. My eyes are the same; good days and bad. Sometimes I can barely see a thing, but other days I look right at things and people. I may not be doing all the same things the average 8 month old are does, but for me, all these things are massive achievements. I AM FAR FROM AVERAGE! I am just soooo special:0)
I have defied the odds by some of my achievements. Even Though I have so many problems, I still laugh and smile. I have made my family so happy. I am so loved by so many. I have touched the hearts of people I've never even met. I have made many cry, but also smile. I have taught so many people, so many lessons.
Thank you for following my life.
Love from Da baba Honk X
Just for the record; my big big brother Max, Still hasn't called me Hope!
Today we met with a new dr. He's from Oxford. I tend to use abbreviations on here for doctors names, as I feel maybe it's not my place to say their full names. Especially if I'm gonna slate them. Anyway this new dr, who I will refer to as dr p, is gonna take a slating, but he has such a funny name, I can't help but try to share it with you; his first name is the shortened version of Micheal. His second name rhymes with his first name, and is also the name of a kind of fish! ( beggining with a P) lol . Guesses to my inbox lol
Mad Auntie Mary and Jamie came along with us today to take us and for moral support . I needed it today. I was hoping for no more bad news, but suspecting we may recieve the PDCD diagnosis. I also suspected that they may want to do muscle biopsies.
So far, all the results are inconclusive. What we do know, is that Hope has a mitochondrial disease :0( They have still not yet ruled out PDCD :0( They still do not have all the results from the previous lumbar puncture. But they, suspect the results will be inconclusive.
So, what next? Dr P wants to admit Hope to Oxford, to have more blood tests and ANOTHER lumbar puncture. As if that's not bad enough, he wants to anaesthetise her and do muscle and skin biopsies. I questioned the increased risks of anaesthesia associated with those with mitochondrial diseases. He admitted there is an increase risk, but there are more risks due to a) her being a baby, b) her brain abnormalities, c) her being eplileptic. As far as I'm concerned, that's a lot of risk factors. He, felt the risks were still small. He said if it were his baby, he'd take the risk. Yeah right!
And the point to all this? Will they have definitive answers? Not necessarily. Will they be able to make her better? No. Will this change her treatment? No. All they can do, is treat the symptoms ( which is already being done). What it MAY do; is give us a name (of a mitochondrial disease). And if we know that, we MAY have a better picture of what the future may hold... Tell us how long we might have her for. 2 years? 5? 10? 14? It's never ever going to be enough. Whichever one of these diseases it is, it's not going to be long enough. But, I don't want to know. For weeks I have had in my head 2/3 years. With PDCD that's about it. In some cases longer. But really, it's awful to think that's all. If it's that , I don't want to know. It spoils the tiMe we have. Also, by not knowing, I am not decieving Dolly and Moo. Anyway, who really wants to know?I mean... None of us know how long we have....but if someone were able to tell you, would you want to know? I wouldn't. So, I guess the moral to this blog is; live each day as if it could be the last! Enjoy! I'm certainly enjoying each day we are blessed with Hope's presence, as I am all of my kids.
I have ( and Chris agrees) decided to refuse these tests. They seem pointless. They serve to purpose or benefit to Hope or I. They only carry risks and more pain. So that's it, dr p. Enough is enough. Leave my baby alone. She's my baby, not your guinea pig. It's quite empowering! No more tests!
I may change my mind along the road. Maybe if Hope starts getting sick. If, along the road we decided we need to know more. If, at some point it seems as though there may be some good come from knowing. I will discuss this decision with dr ch of course, but i think he'll understand, Even if he doesn't agree.
Coming second only to the day that Sam died, and then watching his tiny coffin lowered into the earth, today was the most painful of days. Watching my baby in absolute agony was painful beyond words :0(
The day got off to a sad start when a newborn baby boy in his pram came to the waiting room wearing exactly the same blue and White striped hoody jacket that Sam wore to heaven. Mum recognised it straight away too.
Chris couldn't make it today. He had to leave work unplanned yesterday, and his work are... Well, I think they're beyond being sympathetic. Auntie Mary (Hope's god mother) usually comes along to the appointments, but her lil Jamie has croup, so we're keeping a safe distance for a few days. Realising that today wasn't one of the appointments I felt I could do alone, I called my mummy. Thanks to an understanding work collegue, she managed to get out of het shift and come along. Though bless her, she cried.
I hadn't realised I wouldn't be welcomed to be present for the procedure. I was warned that it wasn't a nice thing to witness, but understanding my need to be there, the doctor agreed, that providing I stand back, don't faint, nor touch anything, I could stay.
I can't say I wish I didn't, but it was horrendous :0( Hope fought and screamed an angry cry as they positioned her for it; curved her spine and held her head down. That was bad enough, but the worse was once they were drawing the spinal fluid. I've never heard her cry like that before. It was the saddest cry ever. Like she'd given up :0(
Oh, and more bloods!
That done, Hope had to stay for a couple of hours just to make sure she was ok. So that was another exhausting day spent at the hospital. We are there for the 3rd day in a row tomorrow to see the dietician!
Auntie Mary called when we were on our way home to say she'd been thinking of Hope all day and bought her a lil something. I imagined a teddy or something. To my amazement the crazy woman bought Hope her second diamond! The first can be seen in the top right hand corner of this blog, in the silver 'hope' bangle bought for her christening. Today's diamond is in a beautiful silver cross on a teeny chain. I know you'll read this, so again thank you sooooo much. It was completely unnecessary as you know, but hope really is so lucky to have you. As am I !!!
The nurse and doctor said that Hope's back will be sore, and she'll likely have a headache. I've kept her dosed up on calpol, but I'm pleased to say she seems her usual gorgeous self. Right now, she's hanging out with her daddy, but for extra comfort is laid on him on a big feather pillow :0)
Oh oh oh, we've had some good news... Max was yesterday offered a years contract to play for Swindon Town! being cool, he's 'thinking about it'. But of course, he'll sign! Seems like we really do have a football star in the making. Man U here we come lol.
To everyone who sent messages today; I passed on each message, kiss and hug (gentle hugs mind) onto Hope. Thank you all for rooting for us.
Well, hmmmph. Big sigh. After getting ready to know; I still don't. Basically, he was able to rule a few things out. It's not MELAS (which is nasty). It's not glycogen storage disease (which I'd have prefered-the lesser of all the evils), nor is it fructase biosphate (knew it wasn't that though). They've ruled out some other things too. But not my greatest fear. And what I suspected most; PDCD. Hope has to have a lumbar puncture tomorrow. I did plan to refuse this. Unfortunately, it is necessary if we want to know. And of course we need to, in order to treat it. He is not sure it is PDCD. But that's at the 'top of his list'. ;0( It could not be that though he said. Other very rare metabolic disorders.
On a positive note; Dr Ch was impressed with Hope today. He could see how alert she was, that she was holding her head well. I told him she was rolling now too. He said she's come a long way since the first time he met her.
So I suppose that's a good sign. I mean, even if she does have a progressive neurological disorder, for the time being, Hope is still actually progressing. Albeit slowly. But importantly, not regressing!
Xxx Ps, if u didn't see yesterday's blog please have a look-photos!
Dr Ch's secretary called this morning. I was completely off guard this time when the phone rang. He's seeing us today at 2. I had so much planned today. Nothing exciting. Just stuff to do round the house. I haven't done anyhing. I'm a bag of nerves. I feel sick and shakey and keep checking the clock. Not long now.
It doesn't help that Max pulled a sicky (I think) today. So I've had to get him looked after, plus arrange for Doll to be collected from school. Chris is coming home from work early. I've done most of these appointments by myself, but need him here for this one.
I had a lovely, perfectly timed lil card come through the door this morning from a very special friend (we both lost lil boys to CDH). Here is what it said: Hang in there I know things are tough Right now and you may feel alone But please remember, Others care and you're not on your own. Just try not to forget To take things day by day And anytime you need me I'll be with you all the way
Perfect hey! A true friend. I am constantly amazed by the love and support from some truely special friends.
6th September- At Bournemouth (for Max's match). Shouting at her big sis
24th August. Perfection!
18th August. Hope's favourite time of day- bathtime
31st Aug- finding herself funny :OD
24th August - looking super cute. Look at those cheeks!
21st August- We went with friends to butterfly world. Even the butterfly could tell how special Hope is :O)
We've had a nice weekend. Fairly quiet apart from football. It was a relief when Friday came because I knew we'd not get any results over the weekend, so I could pick up the phone without having butterflies in my stomach. I am definitely happier in this state of denial! No doubt we'll hear something next week.
Hiya. Thought I'd best just pop on and update that there is still no news. I know lots of Hope's 'aunties' are checking in often to see if there's any news. Thank you all for your prayers and messages of support.
People have suggested I call for results, but I know when dr ch knows something he'll be on touch. Also, I've got to the stage where I prefer not actually knowing , though deep down, I do know (hope that makes sense).
Some have said 'no news is good news'. I wish that was true. 'if it was something really serious, you'd know by now'. Not necessarily true. 'she's strong' 'she's a fighter'. I know, but how much can she do if her metabolism is fooked? 'everything will be fine'. I've heard that before. And it wasn't. Sam died :0(
Anyway, I am still hoping I'm wrong. I will eat my hat if I am. Will happily post pics of me doing it too! And I will, i swear be the happiest person on earth... Just so long as I get to keep her!
Anyway, she's had a great week developmentally. The seizures are still present, though subtle, and infrequent (only upon waking) despite now being on the highest possible dose of vigabatrin. But she's been alert, noisy, looking (sometimes) amused by playing peeka boo with a muslin or her mookie (from auntie kel and Paul). Her head control is really good again (though not by any standards of a 7 or even 3 month old). Yesterday she sat unsupported for about 3 seconds. And today, she's really mastered rolling from front to back. This evening she's been doing it over and over again :0) Hard to believe there could be a progressive disorder when she's still developing.
Today was our first session at koalas (a special needs playgroup). I'd been really looking forward to it, but felt disappointed. 1 Hope slept the whole time (apart from 5 mins we spent in the light room before she fell asleep again) 2 hope was by far the youngest 3 I didn't really feel I had anything in common with any of the parents 4 a lot of the parents make use of the parents room, where they sit and chat, whilst the children r looked after by their key workers. I'd probably have enjoyed it more if I went in there, but lets face it; if I haven't even left hope with her dad in 7 and a half months, I'm not going to leave her with someone I've just met.
On a positive;Hope's key worker seems really nice. I'm sure Hope would like the sensory room and toys if she was awake. Oh and there was this one lil boy 'H' who just melted my heart. I suppose he's the one most like Hope, but I guessed he probably had CP. He was adorable and loved Hope. Which he showed by trying to say her name, touching her, and dribbling over her (which I didn't mind in the slightest btw, cause he was that gorgeous!) Since we've waited for this placement; I will persevere.
Bye for now Xxx
Ps I promise to post some photos over the weekend. I realise it's been ages, but I can't do that on here (my phone) Xxx
Ok, so it's probably only temporary resolution, but for now, it's resolution. I'd cooked up some fish and potato in milk, which Honk devoured, so I decided to give her the remainder of her milky bar from Nanny.
Not quite sure how or where the idea came from, but, for now, this is how I (am trying) see it.... When you rent a DVD, you don't think about taking it back before you've watched it, you don't dread returning it ( even if it's a great movie), you enjoy it. Then when your time is up, you return it. Hope is mine. For now. I must try not to think about when, how etc, but enjoy every second.
There's a poem. I'm not quite sure of exact words (perhaps one of my sands friends can add it as a comment if they know the one I mean). It goes something like this... A little flower, Lent not given To bud on earth And bloom In heaven
Poor Chris took a bit of a blow today I think. We were out buying pretty clothes for the girlies (max was round his Mate's house). Outside mothercare we bumped into hope's birthday buddy ( his Mum and I met through sands cause like me she lost a baby in 07, then despite being due about 3 weeks apart had our next babies on the same day on the same hospital). Anyway, we stood and chatted for a few minutes. It was nice to see them. It was only when we got home that chris said he hadn't realised how delayed hope was until he'd seen her birthday buddy. It's not like we were even with them for long, or that the lil chap was Mobile ( cause he wasn't- he was just in his pram). But he was socially aware. Of himself and others. I suppose cause a) he's a bloke, b) he doesn't come into much contact with babies c) cause her birthday buddy represents a direct comparison, chris had Overlooked hope's disabilities. That's a good thing though really. Like I said to Him, hope is hope and she does the best she can do!
I'm sure tomorrow I'll b back down again. But so long as I can keep picking myself back up...
Still no news on results (obviously). Next week I expect. I
Here goes... More positve... I'm really trying. I am resigned to the fact that it will be pdcd (though still pray it isn't). I am in such turmoil; one Moment in deepest despair, the next, enjoying the life we have now.
But I felt compelled to blog. I've just read the latest blog by Jenn, who is mummy to a very special lil boy called jude. Him and hope are similar in just sooooo Many ways. His mom says the same. We've been following jude's blog since I was pregnant with hope. His mom was given a similar prognosis to us, but like us was blessed with 3 months of that wonderful 'normal', then the seizures struck. I've said before how jenn's blog has helped. That although the path we are on is scary, it's one we've watched jenn and her family walk before. Although literally oceans apart, I hold jenn, jude and her family very close in my heart. Today jude turned 1! Jenn (as always)has written a beautiful blog today. Go check him out and wish him a happy birthday www.cjengo.blogspot.com
Get your tissues ready. Jenn's love for jude is, well she just lurrrvveess him so much-like I love hope. I hope with all my heart that I get to write lots of birthday blogs
Oh, still no news. I have thought about calling dr ch , but I know there's no point. He will call me when he has news. Till then...I wait...I hope
To say that Hope was a much wanted baby would be an understatement. Longed for, dreamed of and needed would be closer to the truth. Her big brother Sam died on Christmas day 07, leaving her Mummy, Daddy, big sister- Jordan, and big brother Max sad beyond words. Four months after lil Sam's death, and we were blessed with another pregnancy. Surely everything would be ok this time around? Sam had died of a diapramatic hernia, so knowing the increased odds of having another baby with CDH, we waited before breaking the news to Jordan and Max. At 13 weeks gestation, we were given the all clear and told the baby was a boy. So why was I dreaming about a little girl called Hope? We broke the news to an excited Jordan and Max. This is when the growing fetus was named 'Honk' (will explain this at some point). After 2 weeks of delight our bubble was burst. There was something wrong. Here began our rollercoaster. Baby Hope was diagnosed prenatally with cerebellum hypoplasia and ventriculomegaly. We were advised to...I can't even type it, but obviously we didn't. Fot the first 3 months Hope appeared to be 'normal' - against the odds, but as time went on, it is becoming clear that all may not be as well as it could be. Hope is now globally delayed, and has recently been diagnosed with epilepsy. Did we ask for a special child? No, but we have been blessed with one. Would we turn back time? No. Hope has bought light where there was dark; smiles where there were tears. I'm sure we will learn more from her than we will ever teach her. Who knows what the future holds for Hope. But I swear, I will always do the best by her and she will know love! Update: Hope has recently been diagnosed with a mitochondrial disorder (high lactic acidosis). Due to the fact that any findings will not provide cures or even treatments we have declined further investigations (skin and muscle biopsies seem too much ).
I am happily married to Chris. I am Mummy to 4 beautiful children, but my beautiful 3rd baby is in heaven.
I am in my 5th year of a BA degree in Childhood and youth Studies. I enjoy my children, reading, studying, blogging, facebook, my friends, and if i get a spare moment, my newest hobby is knitting pretty little things for my smallest princess.