This morning we started in Assessment Triage for more well checks and we rushed off to E Clinic for the much awaited news. I have to admit, this was a new level of nervousness for me. I think it hit me yesterday. Seeing so many people who haven't seen Kayla looking so "herself" in so long made me want to cling to that hope, that memory, that belief that things will only get better from here. The hope that that dagger won't hit my mommy heart again. I woke up at about 1:45am and could not get back to sleep. I was hot. Sweaty. My heart was pounding out of my chest so hard it was as if I was under water and the beating was all I could hear. Just as I woke up I heard Kayla make this odd noise. Kind of like she was about to sneeze breathing in a few deep loud breaths with no sneeze. It scared me more. I wondered what she was dreaming about. Hoping and praying we would have nothing but good news to share today. I took many deep breaths and felt much more ready to face this day.
E Clinic was short and sweet. It was a little bit of mixed emotions as Dr. Gajjar told me that we need to push for Growth Hormones because she has fallen off of the growth chart. But to me, Kayla has always been small. I know she is probably not much bigger than she was at 7 1/2, but to me, she looks perfect. I took a deep breath and was anxious to hear what her Endocrine Dr. would think about his "urgency"...
Kayla and I then rushed to get some quick lunch and luckily saw Jenny and Mae in the Kay Cafe. Phoebe seems to be making a little bit of progress which is SUCH great news. Since her stroke, she still has a very rocky uncertain path which is very hard to understand and process. It really is day to day with a lot of these kids. That... we have gotten very used to here.
Finally, we walked over to Endocrine to get the real scoop on Kayla's growth. She grew almost an inch and gained a little over 1 lb. since her last visit! We will take it!!! So, we got strict orders to keep packing the calories in. Keep up her milk because radiation can make bones dense. Her thyroid seems stable, but I should get that info for sure by tomorrow. Her Endocrine doc said that there is no urgency to push for GH. I couldn't agree more. For now, she can just stay small and healthy!!!! I am very worried about the risks since she has already had cancer. I know that this is very controversial, but for me, I can't get past the possible side effects that it could cause. We will cross that bridge if and when we should ever need to. For now, I am happy to hold off!
Last but not least, my baby took her eyeballs through a stroll through the car wash! Her eyes got the laser treatment that she has been waiting on pins and needles for! She's still quite dilated hours later, but she says that everything looks so clear and new again. She forgot how beautiful the sky was. All of the little details she was seeing tonight brought tears to my eyes. It's the little things! I am so grateful!!!!!! So grateful she is in the best hands possible. So glad she is mine to hold and hug tonight.
All dilated and ready to GO!
To celebrate, we took the shuttle over to the Target House to visit our old stomping grounds. Really, we wanted to see the new DreamWorks room that now replaces the Tiger Woods room. It was INCREDIBLE. What a wonderful addition.
The projector on the ceiling
The interactive screen... kayla was waving her arm and the confetti was flying! So cool!!!
The amazing Candy-Cane Play Ground
We couldn't leave without spending at least an hour in the craft room. Kayla made some goodies to bring back to school. She said I could share ONE on here. One is a Christmas present so it will have to be secret. ;)
Tomorrow our shuttle is set to arrive at 8am to take us to the airport. By this time tomorrow night, we will be home and happy to be bombarded by hugs and purring and so much love. Thank you so much for getting us through this once again. I don't know what I would do without each and every one of you!!!!!!!
I was talking to someone who works at St. Jude today about the blessings of the "St Jude Perspective". We both agreed that everyone should be able to receive this gift... for surely the world would be a kinder place. Well said. Well said.