VEPTR Procedure Wrap Up: Lessons Learned and A Week in Photos

Now that we are out of the hospital and enjoyed a MUCH better night's sleep here at Grammy's house last night, I have been reflecting on all that we have experienced and endured these past two weeks, particularly starting a week ago today with Lilly's surgery.  My pondering--in no particular order--includes the following:

• Sleep is overrated.  Especially uninterrupted sleep.  Even beds are overrated.  Sleeping on pillows on the hospital floor will suffice if necessary.
• Ditto for daily showers.  Totally overrated.
• The hospital--the place where you most need to rest following major surgery--is not the place to get that rest.
• Watching your child suffer great physical pain is very difficult to do.
• Children are amazing in their ability to trust and to adapt.
• You know you've lived in Florida too long when you are out for a run in the chilly Philly air and you still find yourself looking for gators in the water and mistaking debris on the sidewalk for snakes.
• Tag team parenting is not fun but is beginning to feel normal. 
• Missing my man at night is not something I want to get used to.  
• Family is so very valuable.  I am overwhelmed with gratitude when I think of all the help our families have provided: willing to travel thousands of miles and disrupt their own normal routines, willing to care for sick children and contract serious viruses, willing to walk my dog and transport my big kids, willing to cook and clean my toilets, willing to line up ground transportation for us travellers, willing to come and visit in the hospital despite long drives, willing to cook meals and bring presents, willing to do anything we might need without a second thought.
• Friends, church family, and good neighbors are also so valuable: I know so many of our friends and neighbors have been helping in many ways with our big kids back at home.  We are so grateful.
• Modern technology--which has allowed me to keep friends and family updated on our status and has allowed you all to send us notes of encouragement--is amazing.  I truly craved and thrived on the encouragement I received from all of your blog comments and text messages and facebook messages, and e-mails. 
• Modern medical research and technology is also amazing.  The fact that Dr. Campbell was able to take Lilly's spine, which had progressed to over 140-degrees of curvature, and in just 5-6 hours correct it to a roughly 80-degree curvature adding 3 inches to her height, simply astounds me.
• Nothing can substitute for a solid faith in our strong and mighty God.  He is so very good, and I so grateful that He is the God who hears our prayers, who knows our needs, who heals, and who is more than able to do immeasurably more than we can ask or imagine.

As we look forward to getting home tomorrow and hugging Jared and Anna and seeing Nana and Pap Pap, we are also realizing that "normal" is still quite a ways away for all of us. 

• There are many normal daily tasks that Lilly still struggles to do--and she tires easily and feels intense pain easily.  She will continue to need extra help and attention and it will be a little while before she returns to normal weekly activities like school, Cubbies, etc. 
• At the same time, I do not want to, in any way, reinforce in her any feelings of helplessness or dependency.  It will be a struggle to strike the balance between offering her compassion and assistance and encouraging her to work through her pain for her own good so that she can regain her strength, balance, and confidence.
• We are already looking ahead to her next surgery--her first VEPTR expansion surgery in which they will lengthen her rods to keep up with her growth and further straighten her spine.  We need to be able to explain to her in a way that is appropriate for her age and understanding that this will be a process that takes a lot of time.

Enough words.  Here are some photos to encapsulate our experience over these past few weeks.



And here are the before and after x-rays and and "after" photo: