Wednesday, 27 January 2010

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

Thursday, 21 January 2010

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

Saturday, 16 January 2010

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

Saturday, 9 January 2010

Hope's first Xmas (in pictures)

Since Sam died on Christmas Day, just 2 short years ago, Christmas is a difficult time for us, to say the least. However, this year, we definitely had a reason to smile!




Here's Hope in her Xmas pjs on Xmas Eve.           And all 4 of my babies together on Xmas Eve-Sam's 2nd birthday, at his 'garden'.



And here she is meeting Santa with Jordan and Max at the Koalas Xmas party.



And the pile of presents Santa left.



Hope with one of her favourite toys- ELMO LIVE! He's soooo cute and funny!




Hope with some more new toys, wearing the lovely outfit auntie Mary bought her.

And Hope at dinner. She had chicken, roast potatoes, cauliflower cheese, sweet potato, carrots, cabbage, and parsnips- with lashings of cranberry sauce!!!


(If you are just catching up since my long absence, there's a new year post below)

Xxx

A belated Happy New Year



Apologies to 'followers'. I have really been slacking with the blog. There's probably a lot I need to fill in on, but wouldn't know where to start, so I'll begin by wishing everyone a happy new year.
I'm hoping this year will be a quieter one than the last few, that we'll spend less time at hospitals than the last few, and more importantly, that it will be less sad than the last few!

On a positive note; Hope is still seizure free! It's been almost 2 months now I think (with the exception of 7 spasms she had one day when she caught a virus).

The 'around the child' meeting that I mentioned in the last blog, was largely positive, with the exception of something that was said that I'm hoping i misunderstood. Too sad to even type :O(
Again, the topic of more tests came up, and I'm certainly giving it some serious consideration.
Oh, and Hope came up as delayed by 4-6 months on her speech and language assessment. Now some might consider that really bad on a baby who was at the time 11 months, but for me, it's REALLY positive! It means, she is making progress, and is no longer at newborn state.
We were also given a referal to use the hydrotherapy pool (which just happens to be 5  minutes away from our house). We've only been once so far, but it was lovely. Hope had a great time, the pool was so warm it was like getting into a bath, she was laughing and spashing and didn't get fed up, and we were eventually asked to leave after over and hour because it was closing.

On a sad note, we've come in contact with another baby girl 'M' who has recently been diagnosed with infantile spasms (the same kind of epilepsy as Hope has, which is a 'catastrophic' diagnosis). We came into contact with them through the lovely Dr. Ch, who was so concerned for this baby, whilst recognising it was completely unethical, but seeing the needs of the patient over everything else, urgently needed some vigabatrin, which we supplied. So far, our contact has been brief; texts and calls, but we plan to meet in the new year. Of course, I am sad to know of another life claimed by the devastating prognosis, it will be nice to share experiences, worries etc with someone.

Sorry if that was all a bit of a jumble...I mustn't leave it so long....Now I'm gonna post another blog about Hope's first Xmas...(See above)