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We made it to her First Bday!!!

Discussion in 'Parents of Children with Type 1' started by SarahsMum, Jan 15, 2010.

  1. SarahsMum

    SarahsMum Approved members

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    Hi All,

    Its been a while since I popped in here, life has just been incredibly busy.

    For those that dont know me I am Karina and Mum to Sarah who was Diagnosed with Pancreatic Agenesis at birth. She was born without a Pancreas so has Type 1 Diabetes as a result.

    Well I cant believe its been 12 months since I first posted here, it was this time last year that her Drs told us that it appeared she had this rare condition of being born without a Pancreas and they didnt expect her to survive.

    Sarah had her first bday on the 28th November and my god what a Milestone that was! After entering the world at just 1lb 6oz (735 grams), she has just amazed us every step of the way.

    I can say without a doubt that 2009 was the most challanging year of my entire life and Ive learnt so many things over the last 12 months and met so many incredible people along the way, both in person and online.

    Sarah is going pretty well. She is still on the Animas Pump and we seem to be pulling some great numbers the last few weeks. Her Hba1c in August had risen to 9.9% and in November with lots of hard work we had gotton it down to 7.9% so I was incredibly happy with that.

    She had open heart surgery in November, 10 days before her bday and she did incredibly well and made it home with 5 days to spare! Then 2 days later she spiked a massive fever so we headed back into the ED where they noticed she was having absent seizures, at first all the emergency Drs were convinced they were diabetic seizures from low blood sugars but her BSL at the time was 7.1 so definetly wasnt hypo related and she hadnt had a hypo that day at all.

    We were kept in overnight for a MRI the next day, but it was going to be atleast a week before we could get in for the MRI so we came home for her bday and would go back in for the MRI when a spot came up.

    Well early December she went in for the MRI. They were primarily looking at her brain and seeing if the seizure activity has doing any damage and so her endo added on a Abdo MRI to double check she had no Pancreatic Tissue.

    She had to have a GA for the MRI and she had a reaction and arrested during the procedure, but they thankfully able to deal with it quickly. It was a nerous wait for the results but the great news came that her brain was completly clear of any damage.

    Her Endo came to see me (well the endo that was covering holidays for our endo) and confirmed that there was no Pancreas, no gall bladder and no lower bile duct and there was also damage to her intrahepatic Bile Ducts and Liver which we had suspected for some time.

    We now have a meeting on Monday afternoon with her gastro specialist to discuss possible Liver transplant.

    So Sarah is now 13 months old (11 months corrected) and has grown from her tiny 735grams to a massive 6.7 kgs.

    She is such a happy little baby, in the last 12 months we have had 14 hospital admissions, 3 bouts of Pneumonia, 8 of Bronchilitis and 3 admissions because of either high or low blood sugars. She ended up spending about 7 months of the first 12 in hospital but she is just a true little battler.

    She smiles and laughs alot now and takes everything in her stride, nothing much seems to bother her, she has just started saying mumma and dadda, she now sits up unassisted, is rolling everywhere and has her 2 bottom teeth!

    She started Solids about 3 months ago and we now have a really good balance of Basal/Bolus going with her pump which has really helped our BSL control.

    Anyway I just wanted to pop in with an update and thankyou all for your time and patience with us over the last 12 months, its certainly been a massive learning curve for us. We never expected her to leave hospital and regardless of what happens in Mondays meeting to have had her fight through the last 12 months has been nothing short of a miracle.

    We also do have a blog, not sure Ive ever shared it on here before, but its basically all about our Journey living life with Neonatal Diabetes, here is the link http://katmick.blogspot.com/

    And here are a few Pics

    Birth - 735 grams

    [​IMG]

    12 months - 6700 grams

    [​IMG]
     
  2. lynn

    lynn Approved members

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    Thank you so much for the update. I wonder about you guys and how she is doing. A living miracle--what a gift!!

    She's beautiful.
     
  3. Carseatmama

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    :DCongratulations, that is wonderful !!! And glad your back !!!
     
  4. Emma'sDad

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    Yes, I do remember you and thank you for the update. Those pictures are adorable! Take care and come by to visit us more often!
     
  5. hawkeyegirl

    hawkeyegirl Approved members

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    What a beautiful little girl you have. I can't imagine how difficult the past year has been for you, but your wonderful attitude and love for your daughter absolutely shine through in your post. Congratulations to Sarah on her first birthday! :)
     
  6. alismom

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    What an amazing little miracle you have there. Congratulations.
     
  7. jilmarie

    jilmarie Approved members

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    What a huge milestone! Happy birthday to Sarah and congrats to you guys on making it through a tough year.
     
  8. 2type1s

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    Thanks for the update and happy (late) birthday to sweet Sarah! What an amazing girl you have!
     
  9. etringali

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    WOW! what a little fighter! Happy Birthday Sarah! You keep chugging along!
     
  10. SarahsMum

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    Thanks everyone

    Its actually surreal reading back through posts of my mine when I first joined this site, things were so uncertain and we were in absolute shock of her diagnosis, I cant even remember how I managed to get out of bed some days.

    But I can say looking back now it wasnt so daunting, and the support on this site has been amazing, it was so valuable to us especially when we first come home with Sarah and life was obviousily alot different to bring home a newborn without Diabetes!

    So I hope that now I can pass along some insight that we have gained in the last year!
     
  11. LJM

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    What an inspiration Sarah is to us all. A real fighter and survivor. God bless her.
     
  12. Toni

    Toni Banned

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    She is adorable and what a fighter she is! I am sorry to hear of all the other health problems Sarah has had to deal with but glad she has made it though. One tough little girl! Hope next year is uneventful for Sarah. I am very glad you gave us an update; I do remember you. Don't be such a stranger, although sounds like you have been tremendously busy. Here's to a happy healthy New Year.
     
  13. Lizzie's Mom

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    Blessings and prayers as you continue on . . . and thank you for sharing your story!

    Every Blessing,
     
  14. BrokenPancreas

    BrokenPancreas Banned

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    She's absolutely beautiful!
    We share the same birthday also! :D
     
  15. thebestnest5

    thebestnest5 Approved members

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    Happy Birthday to your beautiful little girl!

    Thank you for the happy tears this morning.
     
  16. bgallini

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    Thanks for the update. I remember when you first came to the board. You have done a great job this year. You are an amazing mom!
     
  17. mom2Hanna

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    What a little cutie, I remember when you started posting after she was born, congrats on her birthday.
     
  18. kiwiliz

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    What a beautiful precious baby! I have absolutely no idea how you managed to acheive such a wonderful HbA1c! Well done!
     
  19. fredntan2

    fredntan2 Approved members

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    Your Sarah's A1ce is better than my Sara's A1c
    You are doing such a great job
    (me too)
    you guys should be so proud
    after 09
    2010 should be a peace of cake
     
  20. Becky Stevens mom

    Becky Stevens mom Approved members

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    Hi Karina:) I remember you from the chat room. Sarah is just gorgeous! Thank you so much for the update and a very Happy birthday to you precious daughter and many many more of them. I hope you get a chance to stop in to the chatroom again sometime
     

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