So yesterday was not the day that we had hoped for when we got up in the morning. We got up early and headed to Hopkins with Lexi and Hannah. When we got there and checked in my mom and I went one direction with Lexi and Tom went with Hannah. I was trying so hard to stay positive and tell myself that it was going to be a good day.
Lexi
We met with the head pediatric surgeon at Hopkins. We liked him a lot and he was really good with Lexi who did not want to be there at all. The news was not as we had hoped. I was hoping that he was just going to give us a date for surgery and take the mass out and tell us she would be fine after recovering from surgery. Instead he said that there is sill a 15% chance that it is a tumor and a 85% chance that it is a cystic hygroma. He has requested a sedated MRI to make a final diagnosis. So now this is where we need lots of prayers. We need to pray that its
-not a tumor
-and that if it is a cystic hygroma that it is not in her chest cavity yet. ( they grow rapidly and if its in her chest cavity it would not be able to be removed)
After the MRI is done we will meet with the surgeon again to get a plan for how to go forward. It still could be surgery or some kind of injections into the mass to make it scar and try to get it to stop growing.
Please pray for good news soon!
HANNAH:
After finishing with Lexi I headed over to Hannah and Lexi went home with my mom. Hannah ate a gluten free oreo cookie and part of a gluten free waffle that both contained soy flour. That is what she was being tested for. She was coloring and happy when I got to her and told me how much she loved her waffle. Two hours and ten minutes after eating the waffle and cookie she started to have a reaction. She goes from fine to not fine without any warning. She started vomiting and was unresponsive. They started IV fluid, sugar and steroids quickly. It took her about two hours to respond to us and speak again. She vomited for about three plus hours. We spent most of the day at Hopkins with her on an IV. She is doing better today, just alittle crazy from the steroids. So this means no soy, nothing with soy in it, nothing processed with soy, nothing even processed on equipment with soy. For those of you who don't read labels, soy is in a lot! She is so tough and will bounce back probably quicker than mommy and daddy. We have made the decision with the help of her doctor to give her a break from food challenges. She has been going monthly since she was 20 months and its so hard on her and her body. She needs to start kindergarten and not worry about this. She will not go back until the summer of 2010.
Where to start? I talked to your Mom a little about everything. I really hope that you were calling through with some stable news... I do know this: YOU ARE STRONG and YOU ARE BRAVE. There is no challenge that you haven't faced and overcome thus far, embrace that. Even with everything going on here my heart is with your family! Much love...
Posted by: Heather, Aaron, and Abigail | May 06, 2009 at 11:25 AM
Tom & Erin,
You are in our thoughts and prayers constantly. You have already been through so much in your lives.......but God says he never puts more on us than we can handle. Sometimes that's a hard statement to agree with. God gave you those four little miracles because he knew you were the perfect ones for the job. You are two wonderful people and I know that God will see you through this. Much love & prayers, Angela & John
Posted by: Angela | May 06, 2009 at 04:03 PM
I'm so sorry to hear the news about both girls. Stay strong; Hannah has come so far and is already eating so many things that she deserves a break!!
Hopefully, the news with Lexi will be good after the MRI. She's such a happy little girl and will be strong no matter what!
Posted by: Robin Mattox | May 07, 2009 at 03:10 PM
We are praying for all of you. God bless.
Bob and Linda
Posted by: Linda Barry | May 08, 2009 at 09:39 AM
I cannot imagine how you all get through all of the hardships that you get through... but you do. We will pray for you and your girls every night. Please let us know if there is anything we can do to help. Erin— I am done with school for the summer except for one class on Wednesday mornings. Ava and I would be happy to come down and give you a moment's rest.
Posted by: Angie Ebersole | May 10, 2009 at 09:25 PM
Erin & Tom, We are thinking of you and will be praying for little Lexi. I'm sorry about Hannah's reaction, how scary but I'm sure everyone will be happy with a break. Lots of Love, Bill & Jackie
Posted by: Jackie | May 10, 2009 at 11:18 PM