Monday, July 11, 2011

Moving forward....

It has been pretty quiet at the house the last few days and will be for the rest of the week. Jacob and Brie are at their dad's house in Georgia this week. I already miss them very much, but I know they are having a good time. I will be counting down the days this week until they get home Friday afternoon. Nine days is a record for me being away from them.

Wednesday of last week Jacob had an Avastin infusion at Shands and a Neurology appointment. It was a long day, but everything went well. We left our house at 6:00 am and returned home at 6:30 pm. Even with Brie and Jacob's help with Gavin, I was still a tired mama by the time we got home. I can proudly put it down as another day survived.

Jacob's infusion went well and he didn't have any nausea during or after receiving the medication. Jacob did have a nasty nose bleed on the way home that afternoon, but since that is the worse thing that has happened since his infusion, I am greatful!! I had my last face to face conversation with Dr. Smith before we see her again in October. I talked to her about the adrenal gland debate and his up coming surgery. Jacob will have two more infusions and then then take five and a half weeks off before his surgery. Four weeks after his surgery we will see Dr. Smith in Orlando for the first time, the first week in October, for a clinic appointment to check Jacob's incisions and most likely have an MRI. After that appointment Jacob will be able to start back on the Avastin. At the time of our discussion Dr. Smith said they were waiting to hear back from TMH about Jacob being able to receive his treatment there. A request had to be put in to Tallahassee Memorial Hospital's CEO to approve Kids Corner to administer Avastin to Jacob.

We went from the hospital to lunch and then to the pediatric clinic at the medical plaza to see Dr. Andrade. Jacob's appointment wasn't until 3:00 pm, but I was hoping if we arrived early we could be seen early. I wasn't surprised that it didn't happen. Jacob was called back around 3:30 and we didn't wait in the room too long before being seen, so that was good. Dr. Andrade asked how Jacob was doing and did an exam. He asked how Jacob was feeling and responding to the Tegratol ER. I was happy to report that I haven't seen any odd behavior from Jacob since he started the new medicine. Dr. Andrade looked over Jacob's most recent MRI findings and agreed with what we were told by Dr. Smith's clinic. We talked about Jacob remaining a patient of Dr. Smith's after she moves locations to Orlando and I asked Dr. Andrade if he would continue to follow Jacob. If Jacob doesn't have any problems arise, we will return to see Dr. Andrade in January of 2012.

On Friday I heard great news from Hillary, Dr. Smith nurse practitioner. Kids Corner at TMH is willing to give Jacob’s Avastin infusions as long as Dr. Kelch, Jacob's pediatrician here in Tallahassee, will sign off on the orders Dr. Smith's office sends. Hillary said the charge nurse, Donna, at Kids Corner wanted me to have her number so Jacob and I can visit their facility before he starts his treatment there and in case I have any questions. She already sounds nice! I plan on taking Jacob in August before school starts and before his surgery so we will know what to do when he's ready. We live only a few blocks from the hospital! This will be a huge weight off of Jacob and our entire family. In fact, as I type this I am in tears... I'm not sure why, other than the feeling of relief. I have been so worried how Dr. Smith's move to Orlando will effect Jacob's care. With Jacob starting high school, having his his infusions at home means he will miss less school time and he will be able to rest longer. Over all it will remove the burden of traveling so far every other week for Jacob's care, period. We will make the trip to Orlando every three months, unless things come up to see Dr. Smith have Jacob's MRI and have his continued care with her.

So, for now, we have a plan! Jacob has two more infusions and will make his first trip to camp Boggy Creek in a few weeks. He is getting excited about that. The camp looks awesome. Check out their web site if you have time.

We are hoping to make a Rays baseball game for Jacob's birthday, do some fishing and take a trip to the beach. Jacob has his biannual trip to NIH the week of August 16th and a week after we return he will start at Leon High. I hope to establish a relationship with his teachers and then start to prepare for Jacob to have surgery.

Moving forward, one day at a time.

"Where the heart is willing, it will find a thousand ways." -Arlen Prive

Thank you for your continued prayers and thanks for keeping up with Jacob!!

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