Monday 29th November

Another cold Day we had a Hospital visit I was weighed this morning with an audience, Dr Burns, Kath and Kim from the homecare ! Dum dum dum...now I'm 4.50kg/9lb 15 - nearly 10lbs... I then had my breakfast Mummy felt like she was being tested! Dr Burns was checking up on me after my Blue Do's and is pleased that I haven't had any more since Tuesday
Mummy explained that she has ordered a little apoenea monitor to fit on my nappy called a Respinsense, they are all happy with it but have reservations that it may make Mummy more paranoid...but Daddy thinks it will give us a little piece of mind, although knowing our luck it will go off all the time for no reason and Mummy will be on the ceiling.

shttp://www.respisense.co.uk/?gclid=CPam0vP3xqUCFQ1O4QodtSJFug

We also talked about my NGT (Nose tube) and how long I would have this because the next step would be to have a plug put in my tummy instead, this would involve an operation which wouldn't be very nice. They have to put a camera into my tummy then shine a light outside and then cut a hole in for the plug. Yuck. I would need to be asleep for this and Mummy and Daddy are worried that I may not like the drugs and not wake up. Dr Burns says that there is no rush though so we wont talk about it until January, there is a plus side though as I wouldn't have t have this horrible tube stuck on my cheek.
After many discussions about how much lachelose I should be having, I managed to prove that 4mls is plenty by making a bit of a mess in my car seat today - lovely. That was another outfit in the wash...I just want to make more ironing, like Daddy does.




Mummy has decided that both she and I seem to be running out of clothes that fit us so she took Tamsin shopping with her while I slept on Daddy's chest most of the afternoon. When she came home she had really missed me and we had lots of cuddles. She had also bought me some nice new tops and vests, so I'll be modeling those tomorrow!

Sunday 28th November

Brrrrrrrrr! Its so cold outside, Mummy said it was minus something, she is worried about taking me outside though because its the Bronchil season apparently and she says its just a one way ticket to the hospital if we aren't careful and she has decided that she would like to make December a 'Leighton' free month. That means that I will just look at the icicles that have grown on the plants due to a Mummy malfunction....(left the hosepipe on) and watch the hot air balloon pulling the moon from the window.

I said goodbye to my Aunty and Uncle and my cousins because we were having even more visitors!I am such a popular girl...Big Cousin Daniel and Tamsin arrived and they had brought lovely gifts, a rose plant and bath bombs for Mummy some Nougart for Daddy and a lovely outfit for Me. I'll wear it tomorrow so I look pretty when I see Kath and Dr Burns.

I had a little cuddle with Daniel but he's a boy and lots of boys don't feel very comfortable holding little babies, its nothing personal I know, because he has had three babies of his own and he was probably scared of holding them too, he wouldn't pose for my blog as he's camera shy, but lovely Tamsin has very cuddly arms and she talked to me and whispered nice things to me which made me feel very special.

They also brought more groovy lights for my bedroom that Simon promised last weekend...Daddy loves all my pretty lights...Mummy said we could charge admission to my bedroom, its like Blackpool Illuminations.
I had a really explosive nappy tonight, just wanted to detract from the smell of Mummy's cooking, this meant I had an impromptu bath, which by the way I am able to sit in for longer and longer. I slept really well in the night, so much that I really didn't want to wake up for my 2am feed but when I did Mummy looked just as tired as me!

Saturday 27th November - Family Ties

I met my cousins last night!! They sneaked into the house while I was having my supper and watched me! Beth is  nearly 5 and Thomas 2 and 1/2. And the best bit was they were still here when I woke up in the morning!


I stayed awake all morning today, so I got cuddles with Aunty Julia, Thomas doesn't seem too bothered about me, because he likes cars more. Beth is too small to hold me for big cuddles but kept holding my hand and stroking my hair, which was so nice, she also came and played with me on my mat in my bedroom which I really liked.

Me and My Big Cousin Beth

I slept all afternoon while Mummy and Aunty Julia chatted like old ladies and Uncle Jonathan and Daddy took Beth and Thomas to play at Playworld round the corner. Then the big greedies sat and ate a big box of chocolates while all us little ones while we were in bed asleep! 

Friday 27th November - Another day another dollar...

Last night Mummy went to a special first aid course for parents, she now says that she feels more comfortable knowing what to do if I have another "blue do" as the hospital call it.
Mummy dressed me in pink today, she lets me sometimes, she likes one little outfit that her friend Claire gave us that her daughter, Grace once wore when she was little like me.
She sneaked to the hairdressers this morning to get some spray and came back with pretty hair, the ladies were asking all about me and when she told them they were very nice and made a fuss over her, Mummy was very touched.

Becca, Me and James I want a swirly thing for my car seat!

When Mummy bakes cakes - she is scared to sit at home alone with them, she says they talk to her and tell her to eat them...this is why Mummy asked some friends over this morning to share the Lemon Drizzle (Rachel S. there is some left currently....) so Daddy made drinks for Amy and Emma while Mummy fed me.
A lot of my other baby friends are poorly and couldn't come today, so get well soon Kellan, Andrew and Charlotte!
Daddy has been brilliant because he walks the doggies all the time and Mummy really appreciates it - specially now as its cold and it gets dark early.

Trying one on for size

It was a quiet afternoon and then a lady called Maureen came, Maureen visits families with children with hearing disabilities, we are adding her to the list of professional visitors to our house, they all come with name tags and sad faces. Mummy had forgotten she was coming because she'd arranged it on Wednesday when apparently her head was all over the place.  Maureen explained what will happen when they confirm for definite how bad my hearing is. She showed us what baby hearing aids look like and what they will do, hopefully I will get to hear Mummy singing Christmas carols. The lady placed a pretend one on my ear, this ones blue, but apparently  I can have a pink one with glittery bits and teddy bear stickers - I say bring on the disco hearing aids, so I will be able to hear music!!

Daddy and I watched tele together for a few hours tonight, we like Dog the Bounty Hunter while Mummy went to see some friends. He is trying to find a new a new computer because this one keeps dying and Marlee broke the keys on it and we definitely need it - Mummy is teaching me how good the internet is and how cool that she can chat to her new American friends online, she said they are really helping us. Belated Happy Thanksgiving greetings y'all. x

Thursday 26th November

Editor's Comment:~


Due to emotional inadequacies of Eleanor's parents they did not have the energy to help her post today. Apologies to anyone in anyway concerned. Eleanor wouldn't like to disappoint her loyal readers intentionally. ;-) Lets just call Thursday a bit of a write off although... Thanks to lovely Jo for her late evening visit on Wednesday when a big hug was gratefully received as they say in Erinsborough, Everybody needs good Neighbours xx

Wednesday 24th November - Black Days and Silence

Mummy got me dressed in a rush this morning, she put on another new outfit, this one was from Mummy's work friend Michelle (Thank You xx), its really cool. I had to have half of my feed before 9.30 because we went to the Children's Centre at Shavington for my first Baby Massage session. The lady at the desk recognised Mummy from when she'd been pregnant and this was the first time she'd been back with me since August.

We went into a really chilled out dark room with green starry lights, there were multi coloured mats all over the floor with other babies wriggling on their backs and soft cushions with mummies sat on them. My friend Rebecca and her Mummy Amy came today and sat next to us. The lady who runs the class is called Eileen Welch, ironically she's incredibly Scottish, she talks to a fake dolly while stroking it saying, "I like that" "That's Georgous",I think Mummy found her quite amusing.
Because Rebecca and I had only just eaten we had to wait for an hour before we could be oiled up so Mummy just tickled my toes and stroked my feet which made me fall asleep, oh and trump a little bit. After an hour Mummy did some tummy massage but I was fast alseep so I'm not sure how how that felt and then it was time to go because we had a hospital appointment.

We went to Leighton hospital, what seems like my second home sometimes, Daddy thinks he should get priority parking and a loyalty card for the coffee shop. While waiting for our appointment we bumped into Kim who is one of the Home care Team, when she asked casually how I was, (appart from being porky, as seemingly everyone knows about my weight gain this week) Daddy told her about my non breathing episodes. She looked concerned and contacted Dr Burns immediately, postponing our Audiology appointment...he turned up and closed the door to the room we were in.  He discussed that me holding my breath was possibly the result of my brain doing funny things and that it meant that my respiritory system may be damaged in someway. Mummy isn't the cleverest girl in the world, she wont mind me saying that because she loves me, but I think she understood all to well what this means, which is that soon I may go to sleep and forget how to wake up.

With this thought in mind, sitting through the Audiology tests and finding out that I am profoundly deaf in my left ear and severely deaf in my right ear was probably not the worst news they had heard today - crap by all means, really crap. I really shouldn't swear, but as Mummy edits this I think I must have said something much worse than crap.

When we got home Mummy was on the phone a lot, talking to the Audiology people about me needing hearing aids and then to Dr Burns about what to do if I were to die at home. She held me for a long time before letting me go to sleep, I felt very wet on my cheeks. :-(

Tuesday 23rd November

I freaked Daddy out this morning during breakfast at 6am by deciding to hold my breath, only for a few minutes, Daddy has caught me doing this twice now and he says its not funny and rubs my tummy up and down vigouously and blows in my face. I think its amusing to to see if I can make my lips turn blue, I'm not sure that Daddy agrees. I'm not sure why I do it?
I slept again til 9am and then I woke up before Mummy woke me, I had a lovely wash followed by a head massage, this is to help the scales on my head otherwise known as cradle cap.
I'm starting to have extra brain medication today after Dr Burns said, I quote, my "porky" weight gain (How rude!;-)) and more latchelose, which seems to be hitting the spot, he suggested I could have 5mls twice a day but as he wasn't willing to come change my nappies, Mummy said we'd keep it lower for now.


I had a early breakfast because Ann my physiohterapist was due, she also brought an Occupational Therapist called Alison today. She is looking at ideas for things which will help me like seating for me to keep my heavy head upright. She watched me do my exercises with Ann.
Mummy really wants me to go swimming, like any normal baby and asked about this today, because I am ill they will have to check with Dr Burns that I am 'clinically' well enough. If he says yes, once my immunisations are done Ann said she will arrange to go for posh swimming called Hydrotherapy, Its in a small pool where its quiet and the water is warm, Mummy says it sounds 'lush'! She has been busy looking for a swim hat to tuck my nasal gastric tube into. (NGT for future reference)
I am going to have a personal sensory room experience next week with Ann at Monks Lane Children's centre, their sensory room sounds really good, Daddy wants to get more ideas for my bedroom.
Mummy had planned to go for a walk with our friends from Aquanatal but we ran out of time this morning, she was disappointed because it was such a nice day, but I was very tired after my session and slept lots over lunch, Its better that I get my sleep, as I'm still having small fits. :-(
Daddy and Mummy went back to the Pharmacy to get my milk...even after sorting out a new prescription the company who supply them have messed up my milk order again, I wont have anything to drink at this rate - its a poor do. Mummy says she knows that she is rubbish at maths but even she knows that 12 bottles are not 84 bottles. So now we will have to go back again tomorrow.


We went to Dagfields Antique centre this afternoon as Mummy wanted to buy some nice jars for the kitchen, I wore a new hoodie that Great Aunt Sally and Great Uncle Roy had bought for me (Thank You - it looks good with my hat because without it Daddy said I looked like a boy) Just as Daddy was about to get me out of the car I decided to be naughty and hold my breath again, I realise that this is upsetting Mummy and Daddy but I'm going to do it anyway, I like the fuss - they were going to head back home but I was ok really because Daddy made me cough, so he decided to carry me round with him so he could keep a good eye on me. All those antiques were boring so I slept while they wandered around.

When I got home Mummy let me try on some other new clothes that Daddy's boss had brought for me that we too big previously, they are a bit pink but Mummy says the bunny on them is cute. 

Look at my full 'porky' tummy!!

Monday 22nd November

Grandma got us all out of bed today, she'd heard on the blog that Mummy has carrot cake so she's come for her slice. She was really nice and tidied round while we waited for Kath to come to weigh me......And in the red corner, weighing in at 4.30kg/9lb 8oz its....ME! Now I need to eat 107mls per bottle wow, I'll need bigger bottles soon and possibly bigger clothes.
Mummy has been looking on the internet for clothes for me - she's found some nice websites...http://www.pumpkinpatch.co.uk and http://www.vertbaudet.co.uk and http://www.boden.co.uk/Baby-Clothing.html her shopping bag keeps getting full and then strangely the computer keeps crashing so she never gets to buy me anything...I wonder if Daddy has anything to do with this?

Lilly giving me a kiss

I had a lovely snooze with Lilly this afternoon she's still feeling sorry for herself with her poorly foot. Daddy went to the Chemist to collect a perscription for my special milk because they keep pretending they can't get it and Daddy gets frustrated with them because its all I can have and now I only have enough milk for tomorrow because they messed up. I hope they get it sorted for tomorrow because appart from the fact that Daddy might fall out with the staff, I will scream and scream and scream until I'm sick. Not that I'm enjoying my milk, today,Mummy says I'm messing about and she frowns at me, I keep sticking my tongue out when I should really keep it in my mouth with the bottle, and I also sicked up out loads on the carpet. Mummy says its ok though cause its a cream carpet, she said she chose it specially for  its sicky milk colour.

Mummy spent the afternoon learning how to sew with Grandma, she made a groovy bag and now thinks she might try and make more, she likes being creative and thinks that its something she can do while I'm sleeping (rather than boring cleaning and ironing) maybe she will make good ones that other people would buy and start raising money for my bank account and any treatment or special equipment I might need to help me sit and stop my head flopping. She's seen special chairs on the internet but they cost £1000's! Wow - better get sleeping so she can get sewing!
I fell asleep after my tea and when I woke up I was at Grandad and Nanny Tina's house, with Uncle John, Aunty Sam, Uncle Dave and Aunt Bella. I missed out on Donuts because I had been sleeping! When Grandad held me he said that I was lovely and he loves my little hands, compared to his they are tiny! I think I'd had a lot of cuddles before Mummy decided to get me in my sleepsuit and take me home.

Sunday 21st November

Daddy decided to stay up watching tv until it was time to do my 2am feed, this meant he was mega tired this morning and so Mummy left him in bed 'til nearly ten o'clock. I seem to be getting a poorly tummy again and Mummy has noticed that I have started to have some fits too, she will need to check that because I'm putting on weight that my medication might need to be increased.

Mummy took Lilly and Marlee for a long walk, but Lilly came back limping so Mummy had to rush off to the vets, she left me having cuddles with Simon, I don't often get man cuddles unless with Daddy or Grandad so that was nice. Lilly came home with a funny green bandage and then everyone had breakfast. 

Saturday 20th November

Everyone was feeling a bit lazy today, although Mummy got up early to play with me and my new toy called Inch Worm while Daddy slept in and I got lots from cuddles from Big Cousin Nicky. Big Cousin Nicky has had a big operation on her leg so this meant she had to rest because otherwise she's like Mummy and never sits still - its a family thing. Everyone was happy just relaxing and chatting and eating Mummy's yummy carrot cake and I watched Harry Potter for the first time ever.

I got to play on my mat and watch my lights in my bedroom which I love, I like to gurgle and chatter to myself when I do it now and I started to bash the dangly objects lots Mummy kept cheering every time I bashed one, at first she thought I'd just hit one accidently but I kept doing it over and over again. After going to the sensory room on Friday Mummy is now collecting things to put in a basket for touchy feely play, she ordered a new funky duster called a Minky from Asda but as she says cleaning is boring she said I can have it to play with instead. I wonder if I can play with the Iron too? (Editor: "Tee Hee")
Daddy and Simon went to the cinema to watch a boring boys film while me, Big Cousin Nicky and Mummy watched Mamma Mia, I love to hear Mummy singing, even if she is tone deaf.

Friday 19th November

This morning was lovely I got to snooze in bed with my Daddy, he snores like me! I'm now in some of my 'new baby' baby grows instead of tiny baby, this one is pretty cool isn't it. 

After breakfast Mummy rushed around the house a lot and then popped me in the car, she decided to be brave and for the first time took me out in public and to Nantwich to meet my friends and their Mummy's. I think she has been worried about what people will think if they see me with my tube but she decided that its their problem if they think it looks weird.  I think she put my cool hat on to detract from it personally.










We went to a cafe that used to sell fancy expensive electrical equipment,now they sell expensive latte's and This is Lou and my friend Kellan, Lou used to work with Mummy at Cadbury's, she hasn't cuddled me before and she's pretty good at it, I fell asleep in her arms and stopped her drinking her tea! Mummy had a big fat chocolate cookie and a hot chocolate which she let me have a little bit of froth on my lips yum yum yum!

We headed off to the children's centre where they have a sensory room which Mummy thought would be good for me room, some of the lights are like in my bedroom, but there were lots of funny noises and flashy lights. I chilled out big time. Mummy kept running pieces of material around my head and through my fingers, it was very nice. Mummy fed me with my bottle and tube and I was a really good girl!

When I got home I was pooped, so I had a good sleep, Mummy listened to lots of old music and baked a cheesecake and carrot cake for our weekend visitors - Mummy's cousins Nicky and Simon, they brought a lovely tea for Mummy and Daddy to eat.

Thursday 18th November

Mummy had an off day yesterday and refused to leave the house, she is blaming it on her hormones. We had absolutely no visitors today and although I love all the attention it was good for Mummy and Daddy - I think I caught them kissing too!!
I  still got lots of attention because Mummy played lots with me.
In the morning she emailed one of her new American friends Pamela who has a little boy 2 months older than me called Ethan, he has a similar condition to me. She said that I need lots of Tummy time, Mummy has ordered me a special mat just for this but while we wait for the postman to come she said a couple of blankets were just as good. We sit on the chaise longe part of the settee, this sometimes is a problem as this is where Marlee and Lilly like to have their tummy time too! I don't really like it yet. It really hurts trying to lift my head - its so heavy!
Later on we played with my Caterpillar, I can't quite grab things but Mummy lets me feel the soft pieces and the crinkly bit and I think I can hear something like a jingle when she shakes it.

Mummy says its Children in need day tomorrow - that's me. So if anyone is donating, thank you on behalf of me and other poorly kids. ;-)

PS Thanks Belinda & Martin for the outfit all the way from Canada- still a little bit big but its so groovy!! xx

Wednesday 17th November

It must be getting winter time Mummy has been eating Ready Brek, she says she still imagines having an orange glow around her. Apparently there is going to be a Royal Wedding next year - how romantic, I hope I get to watch this next year with Mummy - she says that as a child she loved watching the royal wedding's on tv.
Chris from the home care team came today to sign Grandma off on her tube feeding with me - she must have done a good job as she passed with flying colours, this means Grandma can feed me anytime in case I need my bottle feeds topping up.

We headed off into the car up to Liverpool again, and had lunch at Sainsbury's - Daddy takes us to all the fancy restaurants! Here we met some lovely people that Mummy has met online, called Lyn and Tony their little boy was called Harvey, he was an amazingly little boy who had a peroxisomal biogenesis disorder like me. He was so very brave and his mummy and daddy loved him so much. They wanted to share stories about Harvey because they felt it will help Mummy and Daddy understand things about what we are all going through as a family. They were so kind and really made us all feel positive and we really hope we will see them again, they are strong inspirational people. (Editor's comment ; I'm sorry I forget to get a photo guys!!)

 

Vogue cover shot?

We were early for our appointment with Dr Morris so I had my lunch with my friends at the Neurology Department, Kerry wasn't in but I got to see Lindsey and Steph who also looked after me. Lindsey looked different as he had died her hair, she said I'd grown loads and I had a lovely cuddle.
We then went for my big photo shoot, the genetics people said they wanted to keep some medical pictures of me on file, just cause I'm so pretty. I didn't bare all, as they weren't prepared to offer me my usual modelling fee!

Finally we got to Dr Morris, the nurse weighed me first according to their scales I'm  9lb 2/4.16kg  - thats amazing!! That averages at 65g a day, thats the most I've ever put on (Mummy and Daddy not sure and will wait for Kath to weigh me on Monday to check for definite before getting too excited because some scales are different)
Dr Morris asked us to come into the office and there was a biochemist called Rachel in the room from the hospital labs 'observing'.

Dr Morris telling me some jokes

Mummy got her notebook and pen out and shuffled lots of papers - she looked very serious and professional, I was very proud of her. She asked lots of important questions and Dr Morris answered every one. They discussed my seizures and how there is a very clever brain doctor called Dr Appleton now looking at my notes, he's the one who suggested my new medication, so far it seems to be working too.
Mummy had requested that I have my adrenal glands checked as has some links to seizures, Dr Morris doesn't seem  to think it is a problem but he likes to keep mummy happy. Thank You Karen Smith for the advice, they are going to check it out.
They also said that it is possible to do (big word coming) pregestational diagnosis if Mummy were to get pregnant again, apparently they can also check this out by at the embryo stage - because Mummy and Daddy had IVF treatment they could do this too, but the Human Embryologist Society need to give their permission - this is of course quite controversial but while this might not be relevant now, it gives them some hope for the future.

Dr Morris also introduced us to a lady called Dr Brooks who specialises in 'palliative care' see below*

Mummy doesn't believe we need to have the palliative care conversation as yet as after meeting Harvey's mummy and daddy she wants to be as positive as possible for my sake. She is determined to make sure I don't want for anything and says that she and Daddy will do anything they can to keep me safe and happy.
No matter how many people keep using the term 'lifelimiting condition' when talking about me, she knows they are just preparing her for the worst but  it wont change the fact she also wants to enjoy every moment possible with me without having a dark cloud following her.

Palliative care is the active holistic care of patients with advanced progressive illness. Management of pain and other symptoms and provision of psychological, social and spiritual support is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families. Many aspects of palliative care are also applicable earlier in the course of the illness in conjunction with other treatments.

Palliative care aims to:

• Affirm life and regard dying as a normal process
• Provide relief from pain and other distressing symptoms
• Integrate the psychological and spiritual aspects of patient care
• Offer a support system to help patients live as actively as possible until death
• Offer a support system to help the family cope during the patient’s illness and in their own bereavement

Tuesday 16th November

I have been really alert today so got to watch Mummy and Daddy a lot.
Sandy the health visitor came because Mummy needed some help filling in lots of forms to get me some money from the government. Also Doctor Burns rang to say that my liver tests came back normal, which is something positive, Mummy says she'll take anything going at the moment.

The most comfortable seat in the house.

We saw Gill the lovely speech therapist today -it still tickles Mummy that I have a speech therapist because its obvious I cant speak yet! Its the first time we had seen her since she suggested I have my tube reinserted. She said she'd felt very guilty but having seen me today she was pleased she had. She said I was feeding brilliantly, that my cheeks were lovely and padded and  that I was really alert more than she'd ever seen. I now have 95mls in my bottle and I've nearly been drinking a whole bottle in every feed.
See everyone -  I am trying my very best to stay on this earth, because I love my Mummy and Daddy and want to be with them.

Mummy and Daddy are trying to plan a special Naming Day for me, she said that she and Daddy feel sad that they'll never see me get married  this would be a special day where I get to be centre of attention and wear a lovely white dress  - sounds expensive! She said she is going to ask Rachel to help with decorations, because Rachel is so good at all the pretty stuff and Aunty Phylis who is amazing at cake decorating.

Monday 15th November

We went to see Dr Burns today - I slept for a while while Mummy and Daddy caught up with him about how my drugs are working and what we'd done last week. I also had to give more blood for Dr Morris to look at on Wednesday.
I felt Mummy stroking my hand and tummy which woke me up but when I did, she was crying. Dr Burns and Dr Morris had talked and both agreed that they were concerned that the fits did mean that I was perhaps on the more severe scale of the Zellweggers spectrum, which means as Mummy suspected, I may die sooner than we all thought. Dr Burns was talking to Mummy and Daddy about needing to start to think about what level of support I will need and at what point I may get so ill that I will have to go to hospital and may need a machine to breathe for me. That was not a nice thing to hear. We are all very, very, sad today.

When we got home from the hospital there was a letter from Doctor Morris explaining that the clever scientists had been able to identify the part of the bad gene responsible for my illness. They did this from taking a skin biopsy from my thigh when I was last at Alder Hey. The 'mutation' as they call it is in something called the PEX1 gene. All genes have two copies and they cant identify the other one so they are sending it to more scientists in Amsterdam. This wont help me :-( - but It could help Mummy and Daddy if they were ever to have another baby because it is a very high risk that, (1 in 4 chance) of this happening again. This makes everyone even more sad.


Here comes the science bit - The PEX1 gene provides instructions for making a protein called peroxisomal biogenesis factor 1 (Pex1p), which is part of a group of proteins called peroxins. Peroxins are essential for the formation and normal functioning of cell structures called peroxisomes. Peroxisomes are sac-like compartments that contain enzymes needed to break down many different substances, including fatty acids and certain toxic compounds. They are also important for the production of fats (lipids) used in digestion and in the nervous system. Peroxins assist in the formation (biogenesis) of peroxisomes by producing the membrane that separates the peroxisome from the rest of the cell and by importing enzymes into the peroxisome. Pex1p enables other peroxins to bring enzymes into the peroxisome.

http://ghr.nlm.nih.gov/gene/PEX1

Sunday 14th November - Remembrance Sunday

I'm such a lazy girl, Mummy said it would take a cattle prod to wake me up! I just like a good old lie in on a Sunday. I wore my poppy today to pay tribute to all the soldiers, Mummy and Daddy have a friend called Andy who is based in Afganistan so we thought of him today, I haven't met him yet, he left for his tour of duty on the Sunday before I was born. Here I am sat with Gunther who is a jingly bear that his girlfriend Penny bought me.







I sat and watched Mummy do the ironing today - yawn - although it was all my stuff. She doesn't touch Daddy's as she says he's big enough to do his own. Daddy doesn't actually like Mummy to do it cause she puts tram lines in his shirt sleeves. (Editor Comment:Cunning eh?)

The smiley Harrison's

There were lots of nice smells coming from the kitchen as Mummy made a roast beef dinner for my friend Becca's parents. She said it was nice to do something normal and that she wanted to do something nice for another new mummy and daddy and that Becca's mummy hadn't had much sleep this week so wouldn't have had time to cook a big meal.
We all watched the Formula one, Mummy got bored after all the crashes finished and was disappointed that Lewis didn't win! Daddy really likes Becca's daddy, because as well as liking the Grand Prix, he likes food just as much as him so he didn't feel bad about having a big portion of Christmas Pudding!
We all sat in my lovely bedroom for a bit and chilled out, I slept a bit more and Mummy had a cuddle with Becca, she says we are similar sizes - it was a really lovely afternoon. ;-) Thank you Amy, Ben & Becca for coming it really cheered Mummy and Daddy up.(sorry if you are now covered in lots of white doggy hairs) xx

Saturday 13th November

Mummy was very quiet this morning and was out for a long time with my doggies but they came back waggy tailed and dirty (Mummy's wellies were dirty not all of her) and Mummy looked refreshed. She decided to make me a lovely sun catcher out of cd's its really cool and makes pretty rainbow circles in my bedroom where the sun shines in. Daddy has put some mirrors up too as they both think that it will help my sensory development. I'm such a lucky girl.

Mummy baked banana bread for Daddy's work friend Michelle when she came to visit. She came laden with gifts for me, Mummy and Daddy - she was so kind and has also given me some pennies to put into my grown up bank account. Considering I've never met her before this was amazingly generous.





She sat with me in my room for a while but didn't want to drink her cup of tea incase she spilt it on the cream carpet. (Mummy, who is known to be most clumsy, also has this fear and only drinks water in my room) so she sat in the lounge - I think Marlee got a bit jealous of all the attention I was getting!
She had to go home because we were going to Grandma's for tea.
I slept really well for most of the day, maybe its my medication - it says I am not supposed to drive or lift heavy machinery because it may make me drowsy. I tend to fall asleep as soon as I get in the car anyway so I don't think Daddy will let me drive. ;-)