Home but far from Normal

We got home Wednesday afternoon, thankful for smooth flights and a mostly happy and pain-free girl as we travelled. 

What we came home to was the hard part. 

Nana was not well at all.  I was in my house roughly 5 minutes before leaving the house again with my mom and dad and heading to the local ER.  Lilly was excited to be home, see her siblings, see the cute Bitty Baby crib that Pap Pap had built for her, and didn't even notice my departure.

Nana had tried to tough it out for just a few days too long, and was admitted straight into the ICU with a "big pneumonia."  She is getting good care now, and is doing much better. 

I am SO glad we came home Wednesday instead of coming as planned tomorrow, Friday the 18th. 

So we are happily home, getting unpacked and slowly getting back into the swing of things here. 

But we are still spending some time at a hospital bedside, praying for speedy healing and recovery for Super Nana.

I won't be blogging for awhile...much to tend to here at home. 

When I do get back on, I hope to post video of Lilly's first post-surgery steps alongside video of her walking so smoothly now.

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:

Discharged and Resting at Grammy's House in New Jersey

Just a sentence tonight: we are free, staying in NJ until Wednesday, cannot wait to go hug my big kids and my mom and dad waiting fir us in FL. I hope to post a photo journal of our week at CHOP tomorrow...stay tuned.

We're Getting Closer!

More forward progress today for Lilly: after a grumpy start to her day (she was clearly DONE with this place), she managed to round a corner and exceed all expectations for post op day 4. She had her last surgical drain removed, she is walking much more steadily and increasingly independently, she is eating well and acting so much more like Lilly much of the time now. When we are within 30-45 minutes of her next dose of pain meds it becomes very apparent in her behavior that we still need the meds, but she hasn't needed any IV meds since yesterday afternoon. We are hopeful that discharge us in our near future--maybe as early as Monday. That would be SO nice! Nothing against the folks here--CHOP has been absolutely wonderful. She has awesome helpful and friendly nurses, she has great OT and PT folks working with her every day, and--get this--even the food is pretty good!

Still, hospital living can wear at you. Lilly said repeatedly this morning "I wanna' go home! It's easy ro walk at home!" As for me, I made the mistake yesterday of not taking a break from the hospital all day, and my emotional state this morning showed it. My wonderful man suggested I take some down time so I went out for a run in the chilly Philly air, had a nice shower, and got to remember that there is life outside of CHOP. A visit this afternoon from Aunt Judi and Uncle Doug also added a bright spot to our day.

So, here's hoping there won't be too many more blog posts typed on the iPhone in the dark of the hospital room!

She Must Be Getting Better

It has been a really good night's sleep--we were blessed with no roommate all night, so our only awakenings were due to Lilly's need for more pain meds at the right times. She is snoozing away as I type.

Last night, we were beginning to see some more of Lilly's typical personality: the good and the ugly. Praise God for her spunky strong will which has made her a survivor and a thriver in her 4+ years on earth. And praise Him that we are seeing her put that strong will to work in her arduous recovery process. May God graciously guide and help us as we mold and shape that strength in other areas of her behavior.

May we see more huge strides over the next few days. We all wanna' go home!

Just had to say sorry for the typos!

I just read through my last post and had to apologize. Typing these entries on my iPhone can make for done interesting spring and words when auto-correct kick in. Spelling and word choice matter to me more than it seems from recent posts! Thanks for hanging in there and reading anyway.

What a Busy Day!

Lots happened today, leaving little time for updates... Lilly's morning started early today when the orthopedic resident showed up to remove 2 of her 3 drains. Lilly was not happy with how that felt, and screamed "I wan' that man be all done! That man! That man--be all done!". It went from a cry to a command to "that man."

The rest of her day included an appointment with OT to work on some strength and coordination, a visit from Grammy and Pop Pop, an appointment with PT for more work on walking, standing, and movement, some x-rays, a visit with cousin Bif and her friend Nick who attend college nearby, some presents, more fun e-catds, and even a package in the mail from Aunt Paula. Nit to mention lots of yicky nasty medicines throughout the day.

More amazing strides forward today--while she is definitely weak and way off balance, she is walking more steps St a time and increasingly independently. We spent Lora of time in the various play rooms today--much better than sitting around in bed, don't you think? And her appetite us definitely improve g.

Dr. Campbell us really pleased with her progress and joked that even getting hit by a truck couldn't stop this girl. He's right.

Now to sleep with no roommate--at least for now. I suspect that won't last but we'll enjoy the quiet while we have it.

Praise God, and good night, dear friends!