Our morning started off a bit rocky...Gavin woke up early and was not in the mood to take a 2 hour ride in his car seat to Gainesville, but what choice did we have? Our trip to Shands today was very important, as all of our trips are, but today was extra important. It was a important to me because we were going to learn if the tumor at the bottom of Jacob's brain stem had changed or grown and Jacob was going to meet with Dr. Pincus to have his 6 week post operative check up. These appointments were a big deal to Jacob for different reasons. He was going to find out if he could go hunting with Pop Dana this weekend and resume his normal activities.
On the way to G-ville I managed to make several necessary phone calls and make my mom very nervous about my driving and talking on the phone in the process. I did get needed information from the Division of Blind Services (whole different story) and I did find out that Jacob's MRI wasn't where I thought it was going to be (there are two different places Jacob goes for MRIs). I also found out that the orders they had on file didn't call for contrast. Jacob's MRIs always call for scanning without and with contrast. So after another call to the neuro surgeon's office that was straightened out.
We arrived at MRI early and they took Jacob back within 10 minutes. After changing into his gown, Jacob informed me that he wasn't in the mood for an IV today and he shed a few tears. After the "it's always worse in your head pep talk" Jacob willingly went to have his scan. They took pictures without and with contrast and Jacob said the nurse tech who placed the IV for contrast didn't hurt him at all. My mom, aka Nana sat with Jacob the entire time and she said Jacob sat perfectly still. Brave Young man. Everything went just as it was supposed to go and we were in and out of MRI within just a little over an hour.
Next Jacob had his post op appointment. As usual we met with the nurse, then a resident and then Dr. Pincus, who said Jacob looks fantastic! Also Jacob is now over 5'3 ft tall and officially taller than his mama! Dr. Pincus also reviewed the scans Jacob had just had and said the tumor in question, at the bottom of the brain stem does NOT look like it has grown or changed. Whew!! Fireworks, let's cheer. Great news and answered prayers. We will be toting the prayer blanket crocheted for Jacob from the ladies at Good Shepard with us everywhere. I do have to call on Monday to confirm Dr. Pincus' opinion with the radiology doctor's report, but Dr. Pincus was very confident in his findings.
The other good news we received was that Jacob can go hunting, ride roller coasters and fly on airplanes. TD was thrilled to know Jacob can once again take out the trash. I was also very happy that Dr. Pincus said that once Jacob starts his scans and appointments at NIH we can bring those scans home and Shands can put them in their system. If Shands is happy with the NIH scans then Jacob will only have to have the scans at NIH. There were a few questions I forgot to address, but I will save them for next time. By the time we saw Dr. Pincus Gavin was no longer happy and the little Captain Cranky Pants I put in the car seat that morning had returned. G did finally pass out as I was running around the hospital trying to get the surgery records and recent scan copies for NIH. That was a much needed nap!
For those of you who don't know we finally got our dates for Jacob's first trip to The National Institute of Health in Bethesda, MD to participate in the 5 year NF2 study there. Jacob, Gavin and I will be leaving November 29 and returning on December 5. I will take notes and hopefully blog all about it when we get home.
For now though we are excited about Chason spending the night with us tomorrow, Granma Gina visiting this weekend, Jacob going hunting with Pop Dana and Gavin's 1st Halloween next weekend.
Thank you, Thomas for helping me get Brie to and from school today and taking such good care of her. I'm so lucky I have you. You are precious to me.
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