Emily had a great day yesterday only complained of the tingling in her feet and that it hurts a little bit! We enjoyed the day and went to aunt Karens for a couple of hours and Emily and aunt Karen made cupcake brownies for mommys birthday! Emily said all day to me, "Happy Birthday Mommy" and was so sweet wanting to have birthday blowers, hats, cups and all! We ordered pizza and enjoyed a few hours with aunt Karen and uncle Jimmy! We enjoyed the time but Emily was ready to come back to the camper after a couple of hours! Thank you we had fun!
Emily could not sleep last night for anything! It was after 1 AM that she finally went off to sleep! Brianna was after midnight, so it was a long day!
Today was a different day, one that we didn't expect, because we thought it was going so well...Emily woke up and was laying around all morning and ate two bites of pancakes that she wanted! So far she is still taking the pills by mouth with applesauce now, hope that doesn't change! We had to wash clothes and while waiting for lunch Emily was drinking sprite and out of no where got sick! It was the weirdest thing, she said her stomach hurt and she got sick! She ate a little for lunch, but not much! And only ate a few bites for dinner, so we know her tummy is bothering her! One of the likely side effects of the nifurtimox is gastrointestinal disturbances such as anorexia with weight loss (loss of appetite), nausea and/or vomiting so the longer than she is on this we expect this and we expect her to not feel well! We are trying to keep on top of it and eating and all of that and may have to start periactin here soon! Thank you Megan for the invitation to dinner tonight, Emily just wasn't up to doing much tonight hopefully we can meet up soon though!
Today was the St Baldricks event in our home area and my best friend, Jessica, her husband shaved his head in honor of Emily! Tim thank you for doing this in honor of Emily, we have not even had the chance to meet you yet, but to do this in honor of Emily is amazing! Jessica and tim's son, Adyan, is Emilys little best friend! They play together so well! Again thank you Tim!
Tomorrow is day 8 at the hospital, Emily will have to be accessed again to check counts and have a full physical by Dr Kaplan! If her hemoglobin is low she will need to have a blood transfusion, and then we will head home after the appointment and pack up the camper! Emily does not want to go home and in some ways i am with her because it seriously would just be so nice to have a day off, a day off not to worry about work and anything else, but gotta get back and get back to work and see Jessie! We miss Jessie and can't wait to see her, life has to move on! It will be a long ride home but we are so ready to get home! We are hopeful that emily does well on the way home and does not have any tummy troubles or even any troubles in the clinic in the morning!
Please send your thoughts that Emilys counts have not dropped too drastically and that she be neutrapenic yet! Emily does have to get the neulasta shot tomorrow and this will be just as traumatic as the port being accessed!
Remember to hug and kiss your kids each night and tell them how much you love them! Have a good night and we will try to update tomorrow evening!
Gorgeous girl you have there!! My heart breaks every time I hear or read about an angel having to go through their precious lives fighting for their lives. I have two babies myself, a 5 year old boy and a 1 1/2 year old girl. My prayers are with Emily and the family as with every other child I've read on, and have yet to read on. Brennan's page got me here.
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