Monday, March 25, 2013
Thank you everyone for all of the birthday wishes!!! Ella had a wonderful birthday weekend with friends, family and fun!!! Almost felt like we were "Normal" again!!! Monday morning reminded us that we are not. While getting ready for school, Ella complained that she felt like she was going to pass out and throw up. She said her heart was beating really fast and that her hands and feet felt tingly. I told her to lie down for a bit and we will see how she is in a few minutes. I checked her temp and that was fine. I asked how she felt and she said the same and that her head and throat hurt too. I called over to CHOP and they told us to come in. Although I don't want to be running to CHOP everyday I was happy to finally feel that our team is on the same page as us. Not to say that our past Doc didn't care for Ella well... just didn't always feel we were doing all we could. Now I feel 100% that we are in the right hands. Tonight is gonna be crazy. I have to keep Ella up til midnight and then wake her at 3am. I have to keep her up to have a sleep deprived EEG at 7am. Then we have to have an MRI and chemo this week too. So this is gonna be a challenging week. I am headed to bed now so I can handle the next 24 hours. Any ideas to keep Ella up that's quiet so not to wake our 2 year old? Thank you so much!!!
Later on Monday, some emotional thoughts as Terri was having Ella concentrate on the memory of colors
On our way to CHOP this morning I asked Ella to close her eyes and asked her to tell me what colors feel like. She had such good answers. She told me white was like fur (polar bear) and clouds. Pink was like a soft blanket and cotton candy. Green was like grass and so on. I want to challenge her to think like this just in the event she loses all sight. I may be wrong and over dramatic. But she has lost so much so fast. I want her to remember what things look like just in case.
 |
| Here is Ella just before the Sleep Deprived EEG |
Ella had a fever while we were at CHOP for her EEG so they wanted to see her and gave her a tylenol. She started to put up a fight but then saw a little boy watching her and switched to showing him how to be brave and how to take pills like a big girl/boy! It was so cute. She said "This is how you take medicine when you are a big boy. You can be brave too."
The day ended up being much longer for Terri and Ella because of the fever...they wouldn't let them go until the fever was down; what would have been about a 10am departure turned into a 3 pm departure. Ella was OUT and sleeping after the testing, while Terri met with their new medical team and discussed the new plans of action.
 |
| After the EEG |
When we were on our way home I wasn't prepared to see Morgan (our homeless friend) so we had nothing for her. Ella was playing with her DS and I thought she wasn't paying attention. After we passed Morgan, Ella said "was that Morgan?" I said "yes, we didn't bring anything with us today so we can't stop." Ella said " Awww we should bring food every time we go to CHOP not just Thursdays. Mommy, we should adopt Morgan." Just melted my heart.
Everything is on hold right now; all medications were stopped by the new Dr. (including chemo) so she can get a "baseline" reading for Ella. They were to meet again on Wednesday to give Ella another MRI and plan the new route for chemo treatments, unfortunately with Ella being sick they can't do the MRI under sedation and would need her to have anesthesia. There were no appointments available for that type of MRI for another week, and without the MRI they can't plan the new course of chemotherapy. Talk about catch 22s!! Poor Ella now has a very bad cough and is sneezing like crazy. This week we are asking for Get Well wishes for our little hero!
No comments:
Post a Comment