Hope's birthday party

The laptop got a virus, so we had to wipe it. It's not up and running 100% yet, so can't add all the photos I want to. From my phone I can only add 1. So I will add one of the best photos we've ever managed to take of Hope (taken at her party) she's smiling AND looking in the right direction!!!

The party was fabulous. Hope was joined by her buddies for a bouncy castle party. We played pass the parcel and had a piñata. And ate lots of jelly!

Thank you to everyone who came to celebrate with us!!

Xxx

Happy 1st Birthday my darling baba Honk

Dear Hope


Happy birthday My super little wonkey baby

Thank you for gracing us with your presence for a whole year. !

Thank you for being the most cuddly baby, just what we needed!

 Thank you for giving me the most wonderful view when I wake up every morning-

you, next to me!

Thank you for the way you reach up and hold my hand

when you are feeding or cuddling.

Thank you baby, for the most beautiful smiles you give us each day-

that's all mummy ever wanted- knowing you are happy, mAkes me happy.

Thank you for teaching us all to appreciate the  little moments in life, and

teaching us to enjoy the present.

Thank you for showing us true love,strength, dignity and bravery;For being happy, despite what life

throws at you.

Thank you for letting me Kiss you a million times a day on your

chubby, warm, pink cheeks.

Thank you for your beaUtiful curls behind your ears, your beautiful blue eyes and curled eyelashes, your perfect skin and your funny belly button.

Thank you for being the cutest baby in the world!
Thank you for needing me, as much as i need you.

Thank you for choosing us as your family. We are truly blessed and honoured.

Thank you for a wonderful year!

Birthday girl with her big brother and her new toy- the mirror chimeabout (which Hope LOVES)

A memento of the special day

afternoon nap

Birthday celebrations at Frankie and Benny's

The cake she overindulged so much that she got heartburn~poor baby

                                   'nevermind photos and wishes...give me some of that cake!'

MMM, Honkey loves birthday cake!!!

One tomorrow!

The above photo was taken at 11pm on the 27th January. The last photo of her
before she turns 1!

My baby girl turns one tomorrow. I can't believe it: many have commented, how quickly it's gone, I'm not so sure. It's been eventful! I guess it's a bit sad, that she's not technically a baby anymore. But of course, she very much is. She most definitely is not a toddler.

Daddy has the day off work tomorrow. I'm looking forward to opening her cards and presents with her. We are taking her to the craft village and getting her hand and footprints painted onto a plate, then when the kiddlies get home we are going for the traditional birthday celebration (for us anyway) to Frankie and Benny's.

Xxx

21 hour awakeathon

That's not normal for a nearly 1 year old right? Hope woke yesterday Morning ready to start the day at 5am. One can't feel anything but joy to wake up next to a noisy smiley girl. Because I've been unwell, we had an 'in' day; cuddles and playing. At lunchtime Hope finally seemed tired, but fought till 1:30 ish. 'S' from Rainbow trust came round to watch Hope whilst I did some housework, and I joked that she'd probably not have her work cut out today because Hope had been up since 5, and had finally given in. I had emptied the dishwasher, cleaned the kitchen, then taken the laundry upstairs to put away. When I was coming back down the stairs I could hear S clicking (hope's favourite noise). Hope was fully charged and ready to play!! She was awake all evening, and very content, which was nice considering she's been under the weather since the tonsilitis. At 10.30 we went up to bed. Hope wasn't tired, but was happy to lay in her cot and have me activate various flashy/noisy toys. But not happy when they stop. I had her In bed to see if she wanted feeding or cuddles... All the while, it's getting later and later. And I am feeling less and less amused. Yet Hope is having a great time and seemed to be shouting louder and louder. Finally some time after 2am, she settled.
Sometimes, I think Hope takes this being 'special' too far! Lol

Xxx

How many doctors does it take to ....?

How many doctors does it take to.....?

On Wednesday I took Hope to the doctor's surgery because she'd been unwell for a few days, and I needed to make sure she didn't have any kind of infection. Because of her mitochondrial issues, infections are more detrimental to her fragile health. I was Assured she just had a cold.
From 11am Thursday, she cried for 4 hours solid, refused all food and drink, and had no wet nappies. Dehydration for hope is a big no no. So I called the children's unit who said to bring her in.

We were taken onto the ward (the bAby room (there wouldn't be much sleeping going on in there I can tell you). At 4 Hope was seen by a doctor who checked her over, said she was fine. Then produced a jug of dyrolight (a rehydration solution), and said when it was gone, hope could leave. Erm...but she wasn't drinking!!! Doh!!!
At 8, we saw another doctor, to whom I explained that I felt the previous doctor had missed the point; Hope has a mitochondrial disorder, she needs her lactate levels checking, her bloods checking, we need to find out why she is crying and unwell.
She checked Hope over, couldn't find anything wrong, but got the requested tests done. But it was gonna take a few hours to get any results, and we couldn't leave :0(
In the meantime Hope needed her epilepsy meds... But she was refusing to drink ;9( knowing that these HAD to go down, I went to speak to a doctor. A mutual agreement was made to ng tube her. A massive defeat in my eyes, but preferable to the seizures if she didn't get her meds. This is when I met the next doctor. I immediatly warmed to him when he began asking questions about Hope's mitochondrial issues. Atlas, a doctor who understands!!! He gave us some really great news... Her lactate level was 4.7. The lowest it's ever been recorded. (it should b under 2, or more commonly under 0.5, but for hope, this is good). He checked her over, in preparation for the ng tube. Hmm... He thought she had a sore throat... Looked in her mouth, and saw pus at the back of her throat. Auntie Mary got to bring home an absolutely exhausted little girl, and one very relieved mum (me).
So, it takes 4 doctors to diagnose tonsilitis. And because it wasn't diagnosed early on, this led to dehydration. It's a joke!


Xxx

How many doctors does it take to.....?

On Wednesday I took Hope to the doctor's surgery because she'd been unwell for a few days, and I needed to make sure she didn't have any kind of infection. Because of her mitochondrial issues, infections are more detrimental to her fragile health. I was Assured she just had a cold.
From 11am Thursday, she cried for 4 hours solid, refused all food and drink, and had no wet nappies. Dehydration for hope is a big no no. So I called the children's unit who said to bring her in.

We were taken onto the ward (the bAby room (there wouldn't be much sleeping going on in there I can tell you). At 4 Hope was seen by a doctor who checked her over, said she was fine. Then produced a jug of dyrolight (a rehydration solution), and said when it was gone, hope could leave. Erm...but she wasn't drinking!!! Doh!!!
At 8, we saw another doctor, to whom I explained that I felt the previous doctor had missed the point; Hope has a mitochondrial disorder, she needs her lactate levels checking, her bloods checking, we need to find out why she is crying and unwell.
She checked Hope over, couldn't find anything wrong, but got the requested tests done. But it was gonna take a few hours to get any results, and we couldn't leave :0(
In the meantime Hope needed her epilepsy meds... But she was refusing to drink ;9( knowing that these HAD to go down, I went to speak to a doctor. A mutual agreement was made to ng tube her. A massive defeat in my eyes, but preferable to the seizures if she didn't get her meds. This is when I met the next doctor. I immediatly warmed to him when he began asking questions about Hope's mitochondrial issues. Atlas, a doctor who understands!!! He gave us some really great news... Her lactate level was 4.7. The lowest it's ever been recorded. (it should b under 2, or more commonly under 0.5, but for hope, this is good). He checked her over, in preparation for the ng tube. Hmm... He thought she had a sore throat... Looked in her mouth, and saw pus at the back of her throat. Auntie Mary got to bring home an absolutely exhausted little girl, and one very relieved mum (me).
So, it takes 4 doctors to diagnose tonsilitis. And because it wasn't diagnosed early on, this led to dehydration.

Xxx

How many doctors does it take to...?

How many doctors does it take to.....?

On Wednesday I took Hope to the doctor's surgery because she'd been unwell for a few days, and I needed to make sure she didn't have any kind of infection. Because of her mitochondrial issues, infections are more detrimental to her fragile health. I was Assured she just had a cold.
From 11am Thursday, she cried for 4 hours solid, refused all food and drink, and had no wet nappies. Dehydration for hope is a big no no. So I called the children's unit who said to bring her in.

We were taken onto the ward (the bAby room (there wouldn't be much sleeping going on in there I can tell you). At 4 Hope was seen by a doctor who checked her over, said she was fine. Then produced a jug of dyrolight (a rehydration solution), and said when it was gone, hope could leave. Erm...but she wasn't drinking!!! Doh!!!
At 8, we saw another doctor, to whom I explained that I felt the previous doctor had missed the point; Hope has a mitochondrial disorder, she needs her lactate levels checking, her bloods checking, we need to find out why she is crying and unwell.
She checked Hope over, couldn't find anything wrong, but got the requested tests done. But it was gonna take a few hours to get any results, and we couldn't leave :0(
In the meantime Hope needed her epilepsy meds... But she was refusing to drink ;9( knowing that these HAD to go down, I went to speak to a doctor. A mutual agreement was made to ng tube her. A massive defeat in my eyes, but preferable to the seizures if she didn't get her meds. This is when I met the next doctor. I immediatly warmed to him when he began asking questions about Hope's mitochondrial issues. Atlas, a doctor who understands!!! He gave us some really great news... Her lactate level was 4.7. The lowest it's ever been recorded. (it should b under 2, or more commonly under 0.5, but for hope, this is good). He checked her over, in preparation for the ng tube. Hmm... He thought she had a sore throat... Looked in her mouth, and saw pus at the back of her throat. Auntie Mary got to bring home an absolutely exhausted little girl, and one very relieved mum (me).
So, it takes 4 doctors to diagnose tonsilitis. And because it wasn't diagnosed early on, this led to dehydration.

Xxx