|Emily slept for 3 hours on the way and was so happy last night!|
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.
Make sure you hug and kiss your kids good night and tell them how much you love them!!
Thoughts-prayers-hope and crossing my fingers,toes,legs,eyes and whatever else I can cross right now. I'm not religious at all but I do think there is someone special maybe an angel looking over Emily and your family to keep her safe and strong.ReplyDelete
I know you are getting great treatment where you are but I always have hope that you can come here to Boston,MA. I have so many resources/drs suggestions/places to stay/fundraiser ideas etc. I have a few connections at some local hospitals here in Boston as in Childrens-Tufts-boston medical center-brigham and womans and then there's always the childrens program at Dana Farber clinic.
I do know you are very very busy right now but if you are willing to share Emilys information with me, I will do some Boston research for you- please please take your time with it though..
Megan and Jon /lickler
Lot's of prayer and hope being sent your way today!ReplyDelete
Praying for you all!!!! I know this has to be so incredibly difficult on all of you. I admire your strength & courage (as a family) to even be able to get through it. You are all tougher than you think you are, because, you are making it!!!!ReplyDelete
And then, there is God-- In your weakness, He shows Himself strong!!! He will be your strength when you need it. He has an endless supply!!!! Hope this has encouraged you, today. Love, Lynn Ronquest
YOU ARE ALL STRONGER THAN YOU THINK YOU ARE!!!! YOU CAN HANDLE MORE THAN YOU THINK YOU CAN!! YOU CAN MAKE IT THROUGH MORE THAN YOU THINK YOU CAN!!YOU CAN DO THIS!!! YOU REALLY CAN!!ReplyDelete
I know this is incredibly difficult on your entire family. I am hoping that these words will encourage you all to tap into that reservoir of inner strength that we all have inside of us. Also, to rely on God-- an infinite source of strength--to get you all through this. As always, My prayers will be with you. Love-- Lynn Ronquest
Glad you all made it safe! Give her a big hug for us!!! I have one for you too Shannon! Miss you guys!!ReplyDelete