Wednesday, July 25, 2012

Surgery Schedule

Surgery Scheduled

Jacob's spinal surgery has been scheduled for August 7, 2012 at 8:00 am at the National Institute of Health with Dr. Ashok Asthagiri.  The procedure includes a spinal lapendectomy and the doctors will be removing two spinal nerve tumors found at C7 and just below.  The tumors are believed to be schwannomas and are not inside the spinal cord, but on the nerves outside the cord. "Extramedullary lesions are located within the small space between the surface of the spinal cord and the bony wall of the spinal canal."  We have been told that these two tumors are large and have Jacob's spinal cord extremely displaced into an "S" appearance.  Jacob and I will be leaving Tallahassee on August 5th and are scheduled to return August 19th.  The real length of our stay could be (and with all my being I pray it will be!) shorter depending on how surgery goes and how well he tolerates pain afterwards.  The amount of rehab Jacob will need is also unknown at this time, but we have been told he will need physical therapy for spinal rehab. 

Over the last two weeks Jacob has remained in good spirits.  Life has moved forward as it always does. The day after Jacob and I returned from NIH, Brie, Sierra and I headed to Orlando to spend the day at Universal Studios (a belated birthday request from Brie). We had a great time riding rides and seeing shows.  I’m happy to report I had the highest score on the Men In Black ride, but I was too chicken to ride the RockIt!  Brie and Sierra rode it twice, once in the morning and once after dark.  Evidently it really does rock!  That evening we were able to spend a few hours with Rachel, Joe and Fran, which was nice.  Thank you, Rachel, for the tickets!  That night I was so exhausted from waking up at 5:00 am to drive to Orlando and from all of the excitement from the park.  Even though I could’ve slept standing up, I was happy to have a very sweet hotel room at the Coco Key Resort on International Drive. 

The next day, the girls and I enjoyed the morning at the Coco Key water park and did a little junk store window shopping.  We were back home in Tallahassee in time for the One Direction "Year in the Making" movie on Nick (as you can tell, I could not contain my excitement).  While we were gone the boys enjoyed some dude time, going fishing out at the Joe Budd Aquatic Center, eating an extra large Momo’s pizza (which, if you have not had the pleasure, is the biggest pizza I’ve seen), and building a birdcage (well, starting a birdcage… who knew that a 6ft x 6ft x 3ft cage could be so time consuming to build? ;) ).

The following week, Jacob got his braces back on and went to Lighthouse day camp.  Brie finished her second week of Hope PE class (now on week three, studying for her final tomorrow).  Gavin had a great week while we were gone with his Pop Dana, getting a haircut, going to the Jr. Museum, to play group and going grocery shopping, I’m sure! Since then we have been to the water park at Jack McLean, multiple park play dates, off to ride his bike and the sprinkler splash pad at Southwood.  We may try skating this Friday if he's ready.  Hehe. 

I was SO excited that my finches laid eggs, but now I’m not so excited. They aren't taking care of their little hatchlings and my heart is breaking.  Anyone a bird expert?  My books didn't prepare me for some of this, and I blatantly ignored my husband’s warnings that raising birds isn’t always a joyful task! He was right for once. Who knew?!

Yesterday morning I took Jacob to the American Cancer Society ROCK (Reaching Out to Cancer Kids) Camp send off party. Even though Jacob doesn't have cancer, his battles are very similar and he fits in well with this group of kids.  So, Jacob is off to Boggy Creek for the next week.  I love it there and I know Jacob does too, so I am excited for the fun he is going to have this week.  I know I have blogged about it before, so I will just share the link for any of you who haven't seen it :)

I’d also like to share the link to the Facebook page I started for Jacob, and to bring general awareness to NF2.  We don't have to be "friends" for you to join, just ask to join and I will approve you.  I know I have this blog and a Caring Bridge page, but, in an effort to spread the word, I am going to use all means available to me. :)

Team Jacob G! Battle NF2

So, as we prepare for Jacob's surgery, both mentally and emotionally, I will be calling on all of you to pray for us - for Jacob, for his doctors, for all the NIH staff and for our family we have to leave behind in Tallahassee.  I am praying, running, blogging and probably driving everyone crazy, but I promise it is all for the good of not going crazy myself (maybe that's why TD started back on his P90X…).

Lastly, I have a proud moment to share... I ran my first 13.1 miles!  Here is my short story! :)

Thank you all, again.  I will be updating soon.

One of the slides at the Coco Key Resort
Jaws is no longer a ride at Universal

Random, I know, but BJ sent this cabinet to me
the week we were gone to DC and I painted it
mocha when I got home, put all my favorite
things in it and LOVE it :)

Jacob is part of the "Troop 23" who worked on this project!
Proud of him for participating in this!
(the weekend before NIH and the weekend after)
Jack McLean Pool Park
Sprinkler Splash Pad at Southwood
Jacob and Gavin at Camp ROCK send off party.
Gavin and I went to the Antique Car Museum yesterday.

1 comment:

  1. Sounds like you all are keeping busy. Busy sure helps me stay out my head too :0) We are praying now & believing that God has already planned everything for you all & Jacob, down to the pillowcase Jacob will lay his head on there at the NIH.