Tuesday, March 31, 2009

Emma Update

Good morning everyone! Emma's decline takes place so slowly that we probably forget to update you sometimes on how she is doing. We don't see changes from day to day, but we certainly see declines from month to month.

Emma seems to be in more and more pain these days. She has recently been fussy, well, always. We're not sure if it is abdominal pain or something else, but we must hold her all waking hours to ease her crying. Even then it doesn't always work. Some days are better. She has also began locking her whole body stiff as a board. It is hard to tell if this is its own action, or whether it is muscle cramps or a reaction to abdominal pain. Either way, the poor thing just locks up with an arched back, stiff legs and over extended feet and cries. We can gently get her back into a ball and she will stop crying and usually go to sleep.

Eating and drinking are becoming more challenging by the day. She has lost the swallowing function and just does a repetitive tongue thrust to get food down. Drinking is less graceful so we use a drink thickener to help her out. Thankfully she is keeping weight on pretty good and now feels like a ton of lead compared to Cora!
Em has also started a shaking in her legs, called "clonus" that resembles shivering from being cold, although she is not. It is just a symptom of another area of the brain being effected.

On a positive note, to commemorate the arrival of baby Cora, Emma's Hugs gave out 100 days of pre-paid parking at MD Anderson Cancer Center on Saturday. That brings our total to over 300 days of parking...and we're just getting started!


To close, check out this beautiful girl in her school picture!
Anyone can run a marathon, but to inspire someone else to run the race is a greater accomplishment. Emma has made many accomplishments!

Kelvin

5 comments:

  1. What a beautiful picture. Thinking of you always.

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  2. That is such a precious picture. You are so blessed to have such beautiful and precious children. Thanks for sharing them with us.

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  3. I love my little Miss Emma. She is such a blessing to me. Well all of y'all are. Thanks for updating, and sharing her beautiful school picture.

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  4. Emma's school picture is precious!

    Hearing the almost constant crying/fussing is extremely difficult. And carrying or holding a heavy, unhappy child -all day and lots at night- is completely exhausting. Not knowing exactly what hurts or why she is sad is terribly frustrating.
    None of this disease is easy... but knowing another family who is dealing with the challenges so gracefully and with such strength gives us inspiration. Thank you for sharing an honest glimpse into your lives...

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  5. Thanks for the update on Emma. I pray for you guys alot!! I have especially prayed that Cora is an easy baby because I know Emma needs so much of your time. It just breaks my heart to think that precious girl is in pain so I can only imagine what it does to you guys. I know God is and will continue to give you guys the strength and patience that you need.

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