wrapping up transplant #1!

Every parent thinks their child is something special. And we should think this because they are! But it always feels good when someone else sees it too. And when these amazing doctors, nurses, and staff are blown away by how well your child has done, well then we know that we truly are witnessing something special. Brian and I have no frame of reference. We don't know what's typical or expected unless they tell us.  These people here have seen everything. So when they make a point to let you know that your child is responding, and recovering, and just overall being exceptional, then that really reaffirms what we already believe. Today, they made it known that Charlotte is close to a record in here with her recovery. And they continue to be blown away by how cooperative and adaptable she is at her age going through this. And like all parents, Brian and I really loved hearing from these experts how amazing she is doing. We will soak up every ounce of positive news. To us, it means her body's strength continues to match the strength of character we already know she has.

She has been taken off her continuous doses of pain narcotic and has been switched over to all oral medications. The only thing she is receiving via IV into her central line is her nutrition. She is still not eating. However, she is swallowing her oral medications like a champion. And her need for blood transfusions is slowing down. All of those is necessary for discharge. It's possible she will be allowed to leave the unit later this week and move into nearby temporary housing! Her time off her IV pole has increased to 4 hours a day. Today, her and Brian took a long walk down to the Duke gardens and that's where I found them when I came back to switch off with him after being home with Taylor and Parker. They were enjoying the fall weather walking around the ponds soaking up the sun and breeze. She is feeling so good right now and even she recognizes and appreciates it. You don't know what you have until it's gone. You don't appreciate sun unless there are stormy days. You don't appreciate what well really feels like unless you've been so sick. She knows this.

So the focus is still on offering her food until her appetite returns. The doctors can physically see how smooth her tongue is indicating her taste buds have still not healed from the chemo. But it will come! And she can be discharged on IV nutrition. I've been trained by the staff to do much home care for Charlotte. From drawing daily labs (blood) to bring here to clinic, to changing her line caps and dressing, to IV nutrition. So we will be all ready when it's time to go! We have reserved an apartment about 5 miles down the road. And the rent is covered by our travel and lodging benefits! We have many people who continue to help support us with meals and groceries and family helping to care for our older 2 (and dog!) at our home. We are truly counting every blessing every second we can. You are each a blessing we count.

Recently our other focus, the well being of Taylor and Parker, has caused our eyes to narrow a bit. I've drafted a post that I haven't published. It was written by me as their worried and emotional and exhausted from hospital sleep mother. I never finished it....but besides your prayers for Charlotte, I would like to ask for additional prayers for her brother and sister. They are being so brave. 2 of the 4 other members of their family have moved away in their eyes. To them, their parents have separated taking one sibling with them while leaving the rest at home. Only add the additional stress that they both realize she has a life threatening disease. Our 7 year old, Taylor, is having many tough emotions lately. As you can imagine, their separation from me and their little sister has been incredibly difficult. And they haven't spent time with both of their parents together in a month. They are doing well at school, but emotions have been running high at home. We have some resources provided by family services here to help them cope with and communicate their feelings. My hope is that when we relocate to this apartment for a couple weeks, things will feel a little better for them. They can come be with us when they aren't in school. We can spend weekends together there. And eventually we can get Charlotte home for a brief period of time before admitted back here again for transplant #2. They are so loved and well cared for at home....and my prayers are that is enough to help them through this time. I can hardly write this without tearing up. I miss them so much it physically hurts. I feel such a vacancy within and am so torn inside. Charlotte needs me so much, but I know they do too. God please help them. Help us. Help guide us all to do and say and BE what they need. Help give the grandparents the patience and wisdom to see them through this time. Help Taylor and Parker accept their guidance and help ease their feelings of separation. Help them feel laughter and simple childhood joys that out weigh their heavy hearts. Help them be kind and loving to each other. Help the foundation of love and confidence that Brian and I laid down over the years be a solid foundation for them to feel. Help us all keep our sense of humor and ability to feel those light hearted moments when possible. Charlotte is doing all she can to heal. So let us be reminded that a family is also a living breathing entity, and it too needs time and patience and the space to heal sometimes. And this is okay. We can do this. We may look back years from now and wonder "how in the world..." but we don't need specifics of how we did it. Charlotte's smile with her siblings arms wrapped around her while they run off and play will be proof enough. And God will be the first one we thank.

Strolling outside

Being a kid in the dirt

First walk outside

Found our fish friends well and happy 

Her special poster they made to celebrate the milestone

Goofing off with the nurses. She put them in time out 

Then made them wear a diaper 

Volunteer giving mommy a break

Charlotte said "shhh me peak"

Attempting some of a Popsicle. Progress people 

On a pass out of the unit. Making her way down to the open area in the children's hospital to go "typing" on a favorite toy. She marches with such confidence. I snap her picture here and she's like "what?" She doesn't know how amazing she is 

A mini state fair. This will be as close as she can get to the fair this year. She loves the Ferris wheel. 

Today at the Sarah B Duke gardens with daddy