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Maisies GA1 Journey

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Maisies GA1 Journey

Welcome to Maisie’s Journey about living with GA1 - we can’t wait to share her life with you all and how we deal with GA1 as first time new parents.�

13/09/2022

Good morning everyone!!

Maisie had a full weetabix today! With some cows milk 🥛

She had 50ml of blue milk which was 1.3 grams of protein ✅

Then a full Tesco’s weetabix which was 2grams ✅

And some berries which are free!

And she ate it all! And drank the milk afterwards 😅🥰

I’m so so proud of her, also looks like she’s a leftie with the spoon holding!😂🥰

Have a nice day -

Amanda ❤️

07/09/2022

Hello everyone,

I thought I would post as I actually forgot about our page!! I know how terrible of me!

We have been so busy with some changes and getting used to the summer and enjoying exploring! 🧚🏼‍♂️

We have had a few admissions over the months since February but luckily Notning has come from it, Maisie now is on 10grams of protein a day. Which is a massive difference as she used to only be 6g.

She’s amazing, and doing great - she has now developed taste buds so wasn’t taking her GA Explore sachet, but with new added flavouring it’s made a massive difference

I would also like to welcome Carol Burch to the page, her granddaughter was recently diagnosed with GA1.

Amanda ❤️

02/02/2022

Hi everyone!

I hope you are all well,

Maisie has had lots of changes since the last time 🧚🏻‍♀️

Maisie is now walking… she’s off! -

Also Maisie’s protein intake has changed, she is now allowed 7grams via food 🥘 she loves her grub!

We have had a few hospital visits but thankfully nothing came of it, and she left with no disfigurements.

I hope everyone is well 🤱🏽

14/10/2021

Sorry we haven’t been Active.

Maisie got admitted on Sunday after having a viral infection which she still has, this is the prime time for her to have a metabolic crisis and for any illlness to affect her mobility. So we had to bring her in, we are still here but every day is a new day. ☀️

She was on continuous NG feeds until yesterday then she went onto 1/2 protein bottles, every 3 hours.

She is absolutely shattered and bored out her little head but we are hoping to get home today if she can toloerate her full protein feeds later on today.

Please please please don’t kiss babies or come near them if you feel unwell, we don’t know how Maisie caught this infection but it’s so important to stay away if you don’t feel well.

I hope everyone is well and excited for Halloween 🎃

Love

Amanda, Jordan and Maisie

17/08/2021

With maises condition she’s only allowed 3.5g of protein a day so we’re up against it looking at recipes and been in Contact with low protein chef to get stuff so today We’ve managed to get a full lunch that only has 1.5 gram of protein in the full meal .

Mango and chicken curry with rice 0 protein rice and 48 grams of mango and chicken curry mix = 1 gram of protein
Banana and chocolate pudding - 0 protein
blueberry wafers - 0.5G protein between 2 wafers

🙏

15/08/2021

Maisie got admitted yesterday because we think she’s caught a wee cold which is extremely harmful to her if not caught early enough due to her GA1!

So we’re staying another couple of nights to help fight it off, she started her emergency feeds yesterday at home before coming along, apart from that she is a diamond and everyone loves her❤️

09/07/2021

We are matching!! ⭐️

I hope everyone is well, me and Maisie went to Ardrossan today! She loved it 😍

She wouldn’t stop smiling and played in the sand 🏰

20/06/2021

Happy Father’s Day Daddy❤️

I love you very much, and I always smile when your around.

Lots of love, Maisie❤️

18/06/2021

Enjoy the game today everyone! 🏴󠁧󠁢󠁳󠁣󠁴󠁿

Stay safe -

Love me,Jordan and Maisie ⚽️

11/06/2021

Maisie and her cats! 🐱

Does anyone else have little ones who love animals?🧐

10/06/2021

Hi everyone!

Who fancies joining my wee sweepstake with the chance of winning a free body shop spend for the winner!

I have 24 teams up for grabs which I will allocate to make it fair. So 24 tickets at £3 each and the winner will win a £75 free spend!!!

Comment if you want a ticket and once we have all 24 sold them I’ll go live to draw the teams out!

🤩🤩🤩

Who wants one? It will make the football even more exciting 😜

Here is my body shop page for some more info!

£3 a number, let me know if you would like one ###

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