Learning to make lemonade....: September 2012

Hollachaboy! Whatever that means. For some reason it came to me when I sat down to write this post. A few weeks ago TD and Gavin paid a visit to Garnet and Gold and spent time with FSU Baseball Hall of Fame inductee John-Ford Griffin, who was in town for the induction and to kick off the new Hollachaboy campaign. TD said they had some quality time with JFG, who stayed late to hang out, and also pointed out that Guy Moore, owner of Garnet and Gold, was a class act. I did see the slogan written on the Subway sign today, so I guess it’s gaining ground!

Any who.

In the big scheme of things, it’s been a really great month. A month ago, Jacob was one week post-op spinal surgery. A mess. This week he went back to school. Yes, Jacob finally started 10th grade!! Thank goodness. I love spending time with him, but mama needs her time! A gazillion things to do and a bored 16 year old can often be a not-so-perfect combination, especially when I’m making him get up at 9:30 am, which, by the way, Jacob thinks is entirely too early. I was beginning to feel like a dictator, spending my afternoons switching him to do his school work. OK, the switching is just in my dreams, lol. With that said, Jacob seems to have a great set of teachers who care about him being successful. I met them all last night (well, almost all of them…) at Leon's Open House and I think it is going to be a good sophomore year. Jacob's coach for Team Sports’ portable is way on the other side of the football field and it was raining... Jacob is working to get caught up on his work (for everything other than Biology) and will just add that to the extremely long “To do” list.

In other Jacob news, he had his physical therapy evaluation this past Monday and the treatment plan has been sent to NIH for approval. He should be starting weekly PT next week. He continues to work hard to strengthen his hands and retain/improve his balance in occupational therapy once a week.

And now for the drum roll please... Jacob has regained all feeling in his right hand and arm!! Thank you, Lord! We are praying hard for the numbness to subside on the left side, in his strong arm and hand. I was very surprised to hear he had regained this feeling, learning this during an intake at his oncology appointment last week. Last Monday, Jacob, Gavin and I made another trip to Orlando to see his brain tumor group for clinic on Tuesday.

With Jacob out of school, we were able to leave early, after Gavin's dentist appointment. Being told my three year old has extremely clean teeth, but two soft spots that need to be filled for $420 started my morning off just right! Humana Dental, you better come through. We just had our transmission replaced in our van, so I was nervous about that as well, but we made it without any hitches to Orlando by early afternoon. On the way down I asked Jacob if he would like to venture further south and visit Give Kids The World Village (GKTW). Jacob and I hadn't been there to revisit since October 2008 and I thought Gavin would love it. If you aren't familiar with GKTW, it’s the amazing place that Make A Wish children and families stay when they are having their wishes granted for Disney World. Any Wish child can return at any time. Jacob was a Wish kid, TEN years ago next month! The village has undergone some "upgrades", like a new life-sized Candy Land playground and sprinkle fountains by the pool, but the warmness of the grounds and the people haven't changed at all. The boys and I played with the model trains, attempted to play dinosaur putt putt, had dinner in the Gingerbread Cafe, and ice cream in the Parlor. One of my favorite places there is the Castle of Miracles. Jacob's star from 10-12-2002 brightly shines on the ceiling, engulfed in a sea of other courageous kids' stars and memories that stay with you for a lifetime. Gavin went trick-or-treating and made a mask, a wand and a light saber (or lifesaver as it is so affectionately known in our house). We saw a really cool mad scientist show. Who knew you could create a huge liquid eruption by adding Mentos into soda? Gavin was highly impressed. I loved being there. I loved being able to be there with my Wish child ten years after his wish had been granted, seeing him laugh and being proud that he's still fighting!!

[This is the timeout that no one can see, me wiping my tears away and finally stopping crying! TD would say, “Like cotton.”]

After that heartfelt paragraph... I’m back from dealing with a small emergency in the back of our house (the big kids' rooms). I have decided I should market a shirt that says, “Yes, I've gained a few pounds. I’m a mom to teenagers & a preschooler whose behaviors force me to consume large dosages of cookies and cream ice cream and I need more time to run it off and regain my sanity.” I guess I wouldn't make any money since that is way too long to fit on a shirt.

Where was I? Orlando. Yes. We had a wonderful visit to GKTW. Our room was lovely at the Ronald McDonald House and I slept so good on the Tempurpedic bed. It would have been perfect if Gavin hadn't had an accident while we were sleeping. We aren't sure what’s going on with that, but he's having some night time potty regression. Any suggestions? He easily fully potty trained by the time he was two years old and went on to wear pull ups at night until right before his third birthday this past April. Nothing in his schedule or drinking habits has changed. He has always consumed large amounts of liquid all day, but usually will get up to potty during the night. Maybe he is just tired and wants to sleep more than five hours at a time. I sure would like to. So, after multiple nights of accidents, the RMH included, I have been putting pull ups on G to sleep at night. It is very sad to hear him say, "But I AM a big boy." I have him help with changing all of our bedding because he still co-sleeps with us most nights, but it is so much work and we can only do so much. G even chose to sleep in his bed a few nights last weekend to avoid having to wear a pull up. We’re working on progressing.

But back to my story. Because I had to change extra mattress pads at the RMH and give G a shower before leaving, Jacob was a few minutes late to clinic. Jacob had his normal weight check and blood draws done. He was super grumpy because he was fasting and they were taking their time with accessing his port. Mrs. Mo (one of our fantastic nurses) did take Jacob to get snacks for him and G right before the crew came in to see us. We saw Dr. Smith, Hillary and Michelle. Jacob's surgery and recovery was discussed. We talked about putting Jacob on lapatinib and its risks. Jacob's heart, lungs and liver will have to be watched closely. He will have to have a heart echo and EKG before starting the drug as well as a baseline MRI. We also decided that it would be best to wean Jacob off of the tegratol he is currently on for seizure control to Keppra. In studies where patients are taking lapatinib, it is shown to be ineffective in 74% of patients also on tegratol (and a few other seizure drugs that are processed through the liver). Avastin was back on the table as well. If Jacob was having more hearing loss I would consider it, but I feel like we should go a new route and save that until he is out of other options. I did ask about lapatinib and Avastin together and rapamycin and Avastin as a combo, but right now we are looking at starting with the lapatinib alone. So, now we wait for Dr. Smith's office to talk to Dr. Andrade (Jacob's neurologist at Shands) to get the approval to switch seizure meds and the best weaning/introduction procedure. Then the tests will be scheduled. Jacob is a long way off from a new treatment, but I'm feeling like a break might be really good for him. I just hope his tumors agree!

Before leaving, Hillary addressed Jacob's weight loss from surgery. We talked about good fats and foods high in protein and good calories and she prescribed Jacob an appetite stimulator. Jacob weighed 112 lbs last Tuesday. Being almost 5'10 you can imagine how thin he is right now. He took the “hungry hippo” pill a few days last week and this past weekend, but hasn't this week because it makes him sleepy and I don't want him sleeping in class. It was a great celebration when Jacob got on the scale last night and it said 118 lbs. Six pounds gained in eight days and six more pounds to go!! He was even able to wear some new school clothes today that he got before surgery. They’ve been too big for him.

Lastly, Jacob's audiogram and ABR testing are continuing to show slow hearing loss, but nothing drastic. His right side voice recognition is down 20% since last year, but it is to be expected. In other medical news, I am not pursuing the radiation route right now. I'm exhausted from these huge decision, Jacob isn't sure what he wants and there isn't a lot of positive support for radiation in the NF2 community. Dr. Pincus thinks it would be a good choice and says Jacob needs to do it now. Dr. A and Dr. Brackman from NIH and HEI don't recommend it. I’m just not sure. That discussion is hereby postponed until further notice!

Everything else is moving right along. In the last entry I wrote about family fun, I was getting ready to run the Red Cross 5K at Tom Brown. I beat my personal best race time, finishing in 31:04, although I know the clock said 30:50 when I crossed the finish line (No, I will NOT let it go, TD! Those seconds do matter!). My goal is to finish a 5K in under 30:00. One day. I’m still in training for the Running for the Bay Half Marathon next month and have a 10K next weekend. Although I’ve been discouraged about finding more time to run, I’m still in love with running. I’m making a lot of friends through Moms Run This Town and learning so much. I think it is so cool that I’ve discovered a new love in my late 30s. My love of running is pouring over onto Gavin, who I believe would’ve been born running if he could have. G has X clocked miles so far for the Kids Run This Town September practice challenge, which was just to run your miles in age. He is well over 3 miles. Gavin even held his own on a 5.41 mile hike at beautiful Torreya State Park this past Saturday.

It wasn't an easy breezy hike either. Growing up in Tallahassee, many of my friends loved camping and hiking at Torreya. Jacob has been there with Boy Scouts, but I had never been. I had no idea what I was missing. It is absolutely beautiful. The park is named for the rare Torreya tree that only grows on the river bluffs there. We saw deer, a gopher tortoise, gorgeous huge butterflies, and a million different spiders. I really loved all the sounds and the blankets of ferns covering the ground. We started at the Gregory House that overlooks a deep ravine down to the Apalachicola River. The trees are enormous and covered in colorful fungi. We walked up and down and around following a map that we picked up at the entrance. We also were on our first geocaching adventure, which, if you’ve never heard of it, is AWESOME! OK, side note time, written by the captain…

So Tammy and I downloaded this geocaching app from Geocaching.com. It’s like a real-world treasure hunt where people all over the world hide little “caches” in places that, at a minimum, contain a logbook for you to write down your information. The app provides the coordinates for caches all over, and there are several in Torreya. We chose one and decided to stick with it, not really knowing what to expect. We told Gavin we were on a treasure hunt, which was obviously great motivation for him to keep hiking! He kept telling us he wanted a car from the treasure box (we read that many geocaches have small items that you can take as long as you leave something of equal or greater value in its place). We were worried that he was going to be disappointed. Anyways, we hiked nearly 4.5 miles before we reached Weeping Ridge trail. The .3 mile trail led us to a beautiful little waterfall (well, more like a dripping faucet, but it was cool!), and closer to our treasure! We had to come up from the Weeping Ridge a little, but after a few minutes of the GPS showing that we were within a few feet of our coordinates, we found it! A tough Tupperware box concealed beneath a fallen tree! We did it! We opened the box and found a trove of little trinkets, and sure enough, an old blue Matchbox car for our little pirate hiker! We signed the logbook after reading some entries, placed a cigar in the box for the next person (because we forgot to bring something to put in, and didn’t really know what to bring in the first place… and because that was all we had in my hunting pack!), and reassembled the cache’s secret lair! We hiked out a very satisfied crew! We look forward to our next geocaching adventure, but for now, back to the story … [end captain’s log]

I secretly loved it too, especially the Weeping Ridge, and even though I have a few suspicious bites, I came home and haven't had a huge break out yet which makes me very happy!

Now that the weather is cooling off, we will have more outside adventures. Jacob, Gavin and I met some friends and had a nice morning last week at the Jr. Museum. They have cool lemurs right now, but even more exciting, they have a new pig and she is super cool! Yes, the pig definitely trumps the lemurs! Trust me! Or don’t and go see for yourself. I guess the huge hog that has been there forever passed, but they did a fantastic job replacing him. This new little pig (well, I say little, but she's bigger than G) put on a big show for us! She was running, spinning and snorting. She has dog toys in her pin and a shower she likes to just stand under. Most adorable thing ever! She will definitely be a favorite of mine.

Thanks to Stephanie and Jerry, TD was finally able to take his dad to an FSU game! Not that the Savannah State game was great, but TD said it was nice to go to a game and not have a single bad thing to say about your team! Jacob and Gavin had a good time too, and everyone enjoyed the blowout so much, the rain couldn’t even bother them! They looked great all decked out in FSU gear, running to the van in the POURING rain! G got to do his chop and is practicing his kickoff noise and his chants on a regular basis at home. Go Noles!

If time permitted, here were the other topics that deserve mention. They are now relegated to list format because I cannot give them the time they demand (coincidentally due to one of the items on the list, the One Week Boutique!):

Brie started ballet AND jazz and is loving dance at school. She has her Aunt Becky's teacher from when she was in hs.

Gavin's new classes, a “Mommy & Me” and a “Music & Drama”

One Week Boutique

Jacob back at scouts, getting thrust back into popcorn sales and the Christmas tree lot!

SUPER excited about all of the stuff coming up in October, including a much needed vacation!!

On second thought, here they are. For all of the times I say I can’t find the time…

MOPS started back this month and I really like the new small group of women I have been placed with this year. I’m looking forward to another year of new friendships and growing the awesome friendships I am so lucky to already have from previous years. Brie is coming home everyday from school and dancing for me. She loves her dance class at school and started back at Hannah Bergstrom Dance studio last week for jazz. She is also taking a ballet class this year. I'm so excited for her (and myself)! I love to watch her dance. Brie has been asked to the Homecoming dance and we will be dress shopping this weekend. Jacob went back to scouts this week as well and hopefully will slowly start back with all of his normal activities. Please be on the lookout for his annual Boy Scout Popcorn sale email to purchase popcorn to support his activities and his Troop 23. Gavin started two new classes this week, a “Mommy and Me” music and art class and a Music and Drama class. TD and I aren't impressed with either, but we will give it another chance next week. Guess if G is happy, we should be, right?

On a very serious note, in the process of writing this post, a friend of mine, Tammy, whose precious son, Connor, has NF2, received bad news from NIH this week. Please put Connor and his family in your prayers. They have some big and scary decisions to make and it is really weighing heavy on my heart, so I know Tammy's heart is breaking right now. Her faith is strong, but NF2 can really break us down. Please lift her in prayer and ask God to keep her close during this difficult time.