Today Lucy woke up feeling great. Once again, another miracle in and of itself. You see her head above. How in the world she went all day without pain medicine blows my mind. Well, actually she had pain regular Tylenol after PT/OT. I would have too if I had worked as hard as Lucy. She had walked an entire lap around the 7th floor by 11:00 this morning. Amazing!
Here are three videos from today's PT and OT sessions. All I can say is that Lucy is one tough little girl and God is very good:
|Lucy gets to wear Ms. Lauren or Ms. Amanda's badge walking to the gym. She can swipe the badge to open the door, but she's convinced she has to say "Open Says Me" before the door really opens. It's so cute!|
I have several things weighing heavy on me tonight. You would be surprised to learn that waiting on the biopsy results is actually low on the list. I guess that 18 months of hell will do that to you. I am ready to know, but I'm not anxious. I am grateful for this peace that God has granted me concerning this issue. Honestly, if it is cancer and the doctors think she's strong enough for Chemo, then we will start immediately. If its not cancer, we have other fish to fry when it comes to school and rehab. So, either way, Lucy still has a life to live and hopefully its a very long one. My job is to figure out how to help her live it the best I can. My job is NOT to sit around and stop living for a week or two while I wait on pathology. It's amazing how at peace I am with it all.
What's weighing heavy is rehabilitation once we leave the hospital this week. There's still the issue of insurance and not having pediatric services in our home town makes the scenario even cloudier. I will be approaching LeBonheur tomorrow morning, trying to get Lucy in their outpatient rehab. The program is nothing like the school readiness program we are missing in Atlanta, but it could possibly be a good bit of therapy a few times a week. It will be a miracle if we get approved but I think it would do wonders for Lucy. School starts in 3 weeks and I am very nervous about sending her without some intensive therapy.
School....that's a whole other concern. How in the world do I send her all day every day (without me??) I'm not sure I can mentally and emotionally, but I'm also not sure that I can physically. And by physically I mean that I don't know that she won't need my help in many areas of school. Yes, I am overprotective. But I also can't leave my baby girl if she's not physically able to maneuver school alone. This is another huge hurdle that has to be crossed. I am praying fervently that God would make clear this plan.
The lady above is our dear "aunt" Tracy. She's Dr. B's right hand woman and the Director of the Brain Tumor Program here at LeBonheur. That means that she handles all the back and forth between here and St. Jude, along with a million other job duties. Tracy has become like our family and we love her to pieces. I honestly can say I couldn't make it without her. Love you Tracy!! Today Tracy introduced me to the Hays family from Mississippi. Please pray for their 6 year old son who has a brain tumor. Thankfully it does not appear to be malignant, but he has a massive tumor that will have to be removed via a long open brain surgery on Thursday. I had the opportunity to sit down and talk with them for a long time today. As a couple they reminded me of my sweet friends Kristie and Jerry. There are so many similarities between the parents and their little boys. It was very bittersweet as I thought about meeting Justin's family in the same spot (the family room) almost 18 months ago. I miss my friends so much and I still mourn for their loss. The memories of both Lanie and Justin haunt me when we are here. I'll never understand.......
We ended the night on a good note with a surprise visit from our friend the Smiths. Lucy nearly jumped out of bed when PK walked in! It thrilled my soul to see her so excited.
There was also a visit from two very special children as well. Its hard to be sad about life when these three make up the best part of mine (plus their daddy)!