First a little context….

We set out on our trip to Kentucky and Virginia for Christmas early, so Rebecca could squeeze in a work trip to Kettering, OH – which meant we would be compensated for traveling.  A day after we arrived in Louisville, she left on her business trip.  Scheduled to return on the 18th, she called me to tell me she leaving at 12:30 pm.

I got a call around 5:30 pm from her saying she was now just leaving.  I was frustrated.  I was sick.  Savanna was sick.  Tristan was sick.  It was becoming unpleasant as Savanna was a complete handful.   We all lived through it-

A few weeks later back home in the routine, she sends me an email with a response to a letter she wrote to Savanna’s doctor.  The timestamp was 3:28 pm on the 18th of December.  But she told me at 12:30 she was on the road?  Something must have happened in Kettering that kept her there but also allowed her the time to compose such a beautiful letter.  She never mentioned to me that she sent a letter.  I sent one too, but not nearly as articulate (sorry GVA!)  Rebecca rarely has time to contribute to the blog directly and this wonderful piece deserves sharing.

It captures her thoughts and feelings at this time of the year.  I completely agree with her expressed feelings about Savanna’s treatment, the regard for her doctor, and the wish to help others.   I might have a wider field of view with regard to ‘how she is doing’ than Rebecca, but that is just me.  More on this in a future post…

…………………….

Dear Dr. Von Allmen,

I want to thank you with all my heart for the amazing care you have given Savanna (as well as me & Ken) through our journey.  When her spasms began, I was afraid to even dream that she might be one of the rare “lucky ones” who could be spared from a lifetime of seizures & the many associated challenges through a miracle surgery.  I prayed like I’ve never prayed in my life for God to guide us and give us the strength and energy we needed to survive and care for her.  I know in my soul that he led us to you.  The confluence of factors that had to come together for us to move to Houston, for Savanna to get the right diagnosis and treatment as quickly and effectively as she did could only have come by His hand.  Why she (we) were found worthy, I will never know.

I have so much admiration and respect for you, as a mother, as a woman, as a doctor, and as a bold entrepreneur in your field.  You saved Savanna’s life, her quality of life, and in doing so, mine as well.

She’s doing amazing.  We traveled to Louisville, KY for Christmas, and it’s pleasantly reassuring to see her go through the common childhood illnesses of Strep throat, ear infections, and the like.

She’s happy.  She’s healthy.  She teases us by walking and looking back over her shoulder to make sure we are watching / following her.  She dances and shakes her booty on request.  She waves and blows kisses.  She plays cars with Austin, and wrestles with Brandon.  She giggles when thrown in the air or on the couch.  She runs and giggles from “I’m gonna get you” when I chase her and eventually give her zerberts on her belly.  She’s putting things into containers & taking them out.  She’s starting to show an interest in books with a few torn pages as casualties.  She’s social and likes to explore and meet new people.  She snuggles.  She climbs up and down the stairs.  She’s starting to make more sounds in addition to “mama & baba”.  She’s starting to use more inflection, and saying pa pa, da da, …  She’s starting to do puzzles.  She’s graduated from AFOs to less intrusive orthotics.  Ken feels good enough about her progress that he is talking about possibly going back to work next year, which will allow me to possibly cut back to 20 hours / week, down from way too many hours.

None of this would have happened without you, your dedication, your training, and your willingness to aggressively treat her.

Savanna was first diagnosed on 12/19/11.  We spent that Christmas Eve & most of Christmas Day in the hospital before Ken broke her out.  It was hard to hear “Merry Christmas” that year.  My dad wished us a “Blessed Christmas”, and we found that to be more appropriate.

If you have anyone going through a similar situation that needs someone to speak with, especially at Christmas time, please provide them with my phone number.

Have a Wonderful, Merry, and Blessed Christmas with your precious family.  If you ever, ever wonder between long hours or thankless tasks, if what you’re doing is worth it, know this, it absolutely is, and I’m so grateful to you, Dr. Tandon, and your entire team for what you’ve done for us.

Rebecca