We Are Here

 

Emily slept for 3 hours on the way and was so happy last night!

 So, we made it to New Jersey on Sunday evening. We ended up leaving later than we had planned to leave on Sunday and then half an hour into our ride, we realized we left our gift cards at home, and had to turn around and get them. We ended up making it to New Jersey to the campground by 7PM. We get to the campground and I run inside to get the site and pay and was shocked when she said your friend took care of it in full. I was like, what who? So a huge Thank you goes out to Sue for taking care of our week here at the campground. It means so much!


We miss the girls already, Jessie is with her dad and Brianna is with my parents. So we are missing them already! Also it snowed in VA (and we never get snow) and no snow here in Jersey/Philly area. Both of the girls got to have some snow time.

Here we are, it is Monday night at 250AM, and I have worked for the night...Emily and Doug are both asleep and here I am awake, wide awake (which is weird for me when not being in the hospital with Emily)...Emily had a visit today at CHOP for a consulation on the broviac removal / port insertion and with Anesthesia Resource Center and then the MIBG Injection. Emily doesn't really know that she will have the broviac removed and the port placed, but I somewhat think she does. We haven't talked much about it, mainly because she will get anxiety about the surgery! We are both nervous about this, obviously because of surgery but also just because of how Emily will be when it has to be accessed. While the best part of it will be, she will not have to have dressing changes and will be able to go swimming and go to school and not worry about her line being pulled. 14 months of not being able to go all the way under water, it will definitly be different. Dr Mattei did indicate that it will be sore for a few days, but then after that she would be fine. Our hope is to sometime take the girls to Great Wolf Lodge in Williamsburg, VA and let them all have a blast. After we left the hospital we came back and let Emily feed the ducks, she was a bit nervous about it, afraid they would follow her, but mainly watched us feed the ducks.

She has been very irritable lately and gets upset easily! Its heartbreaking to see her cry so easily over something that we would not have imagined her to cry about or that she wouldn't have cried about just 2 short weeks ago. Today while waiting for the MIBG Injection she wanted to play with a little girl, well the little girl left and went back to her mom and Emily cried, and it came out of nowhere and Doug picked her up and tried to get her mind off of it. The little girl realized it and then asked Emily to come and play and then Emily was fine. It was heartbreaking to watch your own child cry about her feelings being hurt! She still comments about pain in her hip when you touch it, but is walking/running around with no problem.

Tomomorrow is MIBG day, Emily will have her scan at 10AM, and I am beyond nervous and scared about this day and I know Doug is too! Emily will rock it, like she always does and be such a big girl and sit still so she does not have to have the "white stuff". I have some major scanxiety going on right now but still trying to keep up the hope, Im thinking that is why I am still awake, because my mind won't shut off! The hardest part is also not knowing what is coming next, what the treatment looks like or anything and where tomorrow will bring us. Please send us lots of love, thoughts and "HOPE" as we go through these next few days.

A big huge thank you to Burkeville Baptist Church for putting on a fundraiser for our family and to all of our family and friends who were part of such an amazing event. We have no idea what this next year will bring us with treatment, but as long as all of our family is together is all that matters.

Jessie and Brianna, I miss and love you girls both so much! Hope you both have a good week!

Make sure you hug and kiss your kids good night and tell them how much you love them!!