She is still hanging in there.
Emma had the chance to hang with Michelle Schimek to do a mini photo shoot and here are just a couple sneak peeks
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| Emma's Praying Hands |
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| A Little Red Riding Hood |
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| Red Riding Hood Peeking |
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| Just an Emma Smile |
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| Trying to do a serious face |
Thankfully, she doesn’t express any issues with pain. She is dealing with a lot of itching around her eyes and nose, maybe allergy related? It is an extra source of frustration since her arm movement is becoming more of an issue each day. Her legs have become weak and she sometimes has trouble supporting her weight due to the steriods. They sometimes quiver due to the weakness in the muscles. She is a very restless sleeper and she has fallen out of bed several times and seems to end up squished between the rails on her bed. Over the last couple of days Emma has had 2 TIA's which is transient ischemic attacks. These are what they call mini strokes and she is having more and more issues. They told us these will happen more often now and that they will eventually lead up to a major stroke which will probably take her life.
She still has spells of wanting something specific to eat but doesn't usually care what it is she just always says she is starving. She has gained about 15 pounds and is very puffy. It is very upsetting to her and she usually ends up mad at me about it. Not really sure why but I guess Mom is the best one to blame. Thankfully, she usually gets over it pretty quickly. Who can blame her? It is truly a frustrating existence.
She likes to joke around sometimes and she still likes to watch all of her favorite shows and movies. A new found favorite is That 70's show and anything with dolphins. We also watch Chris Cox several times a day, that goodness for dvr. She still likes to go to the mall occasionally and no trip there is complete without a trip to Justice and the book store. Since her body tires so quickly and she gets out of breath so easily, books are really about the only thing she is interested in. She doesn't read really well anymore because her eyes are very blurry so she listens to a lot of books.
Things have been so hard this past month and not only are we dealing with Emma's anger and her struggles but we are dealing with so much more but this is God's plan and all we can do is follow it and accept whatever he throws our way.
It is a very stressful situation to be in but quite honestly we are exhausted. As if this whole situation is not hard enough, it just seems like everything this past month has been a fight. All we really want to be doing is soaking up every bit of time we have with Emma. I do not want to miss one smile or giggle. I want to be with her every second I can because unfortunately we feel like we are running out of time. No one knows how long Emma is going to be with us but we will take all we can get. It has been a long and painful 18 months in some ways and it has flown by in others. We pray everyday for divine intervention but each day we don’t see any improvement, it becomes harder to believe it’s coming. Now here we are, hoping each day to see a smile and for her to have no pain. There have been so many children pass away over the past few months from Rhabdomyosarcoma and other childhood cancers. It has always been a painful thing to hear about but when your child has gone thru such a drastic decline, the news is even harder to hear. It hits much closer to home and the emotions are much easier to relate to. Please pray for all these families that are now forced to live life without these wonderful children.
We are hoping to take Emma to the First Annual Fighting Spirit Banquet for Western Wishes on Saturday night, we are praying that she is feeling well enough to spend a couple of hours there. Evenings are very hard and she is usually sleeping by 6 or so.
We thank all of your for your continued prayers and for all the fun cards and notes she has been receiving, she is so excited to get mail and hear from friends and family.
