Playing catch with new friends... Ahhhh! E Clinic!
This is Kayla's "I can SEE the light" pose. HAHA
Sweet, Silly, Beautiful girl!!!! I love this face.
It was such an exciting moment when our team walked through the door! We weren't expecting Dr. Gajjar until tomorrow, but he surprised us too. There is just something about being back there that makes us feel so reassured. Dr. Gajjar told us that Kayla's Brain MRI is clear. NED. CLEAR! We will never ever ever take an MRI lite ever again. We were really hoping to get Kayla off of TPN today or tomorrow but that is not going to happen. Despite her efforts to eat, they want to see this continue through the weekend. We will discuss ending it again on Monday. Since cutting out the lipids 6 days ago, cutting back the calories, and even with pharmacy forgetting to send TPN one night, Kayla still managed to put on 2 ounces. This is a great thing in the eyes of the docs. We just need to keep this up and we are sure it will be a thing of the past soon. Right now she is getting 60% of her nutrition through TPN. 50% is the minimum and then you wouldn't even need it, so you can see how close she actually is! When I heard 60%, my heart dropped imagining we had so far to go... but 10% is nothing!
Tomorrow Kayla will have another MRI of her spine to make sure everything there is still clear. Later on in the day, she will have her Lumbar Puncture. So, if all is clear and she can keep her weight up over this weekend, that line should be out early next week! We can't wait!!!!!! Tomorrow is a big day. Not to mention, how do you put on weight if you are NPO (no food because of the upcoming sedation) ALL day? We are hoping something earlier will open up for Kayla. We also heard Dr. Gajjar mutter that he is hoping to have us home by next Friday! So, we are booking tickets for Anthony and I to head back asap. The car is on order to be picked up any day now (within a week). St. Jude will pull their strings to get our "two" home. Can't wait to all be home again. And just in time to enjoy summer and relax a bit before school starts.
Tonight I noticed that Kayla was having a really hard time eating again. Tears welled up in her eyes and silently trickled down her cheeks. I knelt down to her level and she told me that she can't take being away from meow-meow any longer. That he needs her and she needs him! It was the sweetest thing. So our new strategy is that every time we see her struggling with food, we will meow. So when I saw her spoon lingering for too long, I would just send a little "meow" her way. She would giggle and immediately take another bite. Albeit small, but still something! Haha. I will find motivation however I can!!!
Now. Here is something that cracked us up! Ok, we haven't been to E since the very end of January. One of the popular "prizes" that are handed out here at St. Jude are stickers. On one special visit, we were given stickers of the Beebs (Justin Bieber). To make Kayla laugh, we put these stickers on the three boxes of latex gloves in one of the exam rooms. Today, we ended up in that room. Two of the three stickers remained. Guess we know which size is used most often here. I wonder how long through our round of future check ups those stickers will remain. I will have to keep tabs on Exam Room #2 while the tweens hope that that hair cut is surely a thing of the past.
Soon we were on our way back to the apartment in great spirits. We could finally truly see the light at the end of the tunnel. We still have a big day tomorrow, and we are hopeful the news is just as positive as today. For now, we DANCE.