Friday, June 29, 2012

May Wrap up and June short story

I started to blog about the rest of May over a month ago, but [insert one of a thousand reasons why I haven’t here] and haven't been able to finish. So here goes nothing, and I'm gonna throw June in as well.

Really quickly, Jacob made it safely to Camp Daniel Boone Boy Scout camp in Boone, NC. He wasn't able to go whitewater rafting on the way up like he usually does due to his C- 7 spinal tumor, but from the photos we’ve received, he looks like he is doing well regardless. Not to mention, Jacob's best friend, Maks, is sporting a cast for a broken thumb from gymnastics and wasn't able to get on the rapids either. I believe they were going to check out where the 1996 Summer Olympic kayaking events were held while the others were on the river. Jacob will be home on Saturday evening. We miss him! Also, Jacob does not have spinal surgery scheduled. I’m waiting as long as we can with the hopes of doing no harm in either direction. Dr. Pincus did call last week to see when we were going to schedule and I had to tell him we weren't yet. I’m still sure about waiting and I'm very happy Jacob is enjoying his summer so far.

Back to the month of May...

I had a very nice Mother's Day weekend. As far as motherhood goes, I really feel so blessed and lucky every day of my life. I have three great kids who aren't perfect, but are absolutely awesome! I feel close to each of them in our own special ways and always feel loved. Of course, there are moments of craziness, but they are fleeting. We eat dinner every night as a family at our dining room table and we spend every afternoon together. We do our best to plan our outings together... there aren't too many things that we don't do as a family. TD is the chef in our house and cooks dinner most nights and he is a big help whenever I need it. I get to stay home and play with Gavin every day. I am able to pick Jacob & Brie up from school and be there for all of their activities and appointments. I feel like every day is Mother's Day for me :) Well, almost every day.
TD still managed to make me feel special for Mother's Day. That Saturday, we went on a little local adventure to the Leon Sinks Geological Area. I had not been there since I was a teenager and it was TD’s first visit. We made a 3 mile circle hike and saw 8 amazing sinkholes. We also saw extremely tall trees, spiders, beds of ferns, a male and female fence lizard (Have you ever seen a lizard with a blue underside? Super cool!), a scorpion lizard, a few black racers and some marshlands. Gavin walked 75% of the way (which may be a little generous) and hitched a few piggy back and shoulder rides here and there. Daddy forgot the snacks, so our end-prize were yummy Icies and gas station chips on the way home. I also brought home a few new friends. Evidently, I am allergic to arachnids. I have three tiny deer ticks and a dog tick to thank for two trips to the doctor, two weeks of antibiotics, a week of allergy medicine, and a rash from the depths of hell. My shoulder, back and arm are clearing up finally and my neck looks better today. Tomorrow will be two weeks since our trip. I loved our hike in the woods, but I don't need to go back anytime soon. I have had the same reaction to a Florida scorpion bite and a spider bite, so I am self-proclaiming that I am seriously allergic to arachnids.

Sunday was nice. I know now, as an adult, how my mom always felt having her family at church with her. We don't always make it together and when we all do, it is very special. I love being in church. Having my husband, parents and kids next to me only makes it better. Gavin made his first appearance in the three year old Sunday school class and loved it. Afterwards, we had a delicious brunch at my favorite Cajun restaurant.

That same week, I had my last MOPS meeting and said goodbye to another year of Moms of Preschoolers. One more year and I will be moving up to Moms Next, which I could currently attend seeing as how I have two alien teens, but the schedule doesn't fit for when Gavin is in school. For any of you moms looking for support, fun and fellowship, I highly recommend finding a MOPS organization near you. I have met some of my closest friends there.

I also had Jacob's end of the year Individual Education Plan (IEP) meeting the week of the 14th. I met Jacob's new Vision teacher and talked with Jacob's Strategies teacher about what he is going to need next year. Jacob is so against using any visual aids in class, so we discussed a few tools that he may actually carry with him, like a Nook or an iPad. He obviously isn't going to use his Booksense, Optelec or CCTV, which is ridiculous. He waits to get home to do so much of his work. UGH! I pray one day soon he will "get it." His ESE teacher informed me that she is retiring and I am not thrilled about having to start over with that class, but what choice do I have? Three more years... I have three more years! I am just thankful that Jacob enjoyed his freshman year for the most part and got all six of his credits. I have high expectations for him to work harder next year and not make TD and me crazy in between grading periods, when he is playing catch up. Anyway. As doctor Hopper says, "Next Please!"

May is NF Awareness Month. On May 17th the NF2 community worldwide dressed up to celebrate the lives of everyone living with NF2. I was very moved by all the posts of celebration and was impressed with how well we all clean up (just kidding :) ). Feeling very busted with an inflamed and disgusting rash, covered in calamine lotion, putting on my beautiful yellow gown was fun. Although after not putting it on for almost five years, I’m disappointed I have only lost weight in the one area I would like to keep it, lol! Ok, "Next Please!"

May 18th was Brie's 14th birthday. Yes, 14 years old. As with every milestone each of my children make, it is hard for me to believe how fast the time is passing. As much as I laugh about both Brie and Jacob morphing into aliens and trying to remember when they were sweet and innocent little ones, I find myself falling in love all over again, differently. Brie has changed so much over the last year. I like that she is trying to be independent, but still wants me to tuck her in at night and will still hug me tight. Her birthday was special this year because her dance recital rehearsal and 8th grade dance were the same night. Brie's Aunt Becky bought her a fabulous dress and some killer high heels for the occasion and Brie looked gorgeous. Magazine worthy material. She said she danced, laughed and had a great time. Dana and Gina came up from St. Pete and Sierra spent the night. We all went together to Brie's dance recital the next morning and watched our girl dance. Brie did awesome. I love watching her dance. Her recital was at TCC's auditorium, which is where Brie had her very first recital when she was four years old. It was very nostalgic for me. 


We finished up the weekend with a beautiful Saturday afternoon at Dick Howser Stadium watching FSU Baseball and spent a silly Sunday morning playing putt putt and games at the Fun Station. Gavin road his very first go cart with TD and they had the fastest cart of them all! Gavin got off and said, "That rocked!"

May 22nd was World NF2 Day. I just want to send a quick shout out to our NF2 family. God Bless you all! I feel so blessed to know all of you and have you in my life. Thank you for your care and concern for Jacob, me and my family.

The last week of May was busy with Memorial Day, school exams, Gavin's end of the Pre-K2 year party, and a trip deep sea fishing. I am very sad to report that the deep sea fishing trip was a nightmare due to bad weather, but being the good sports they are, TD, Jacob, Dana and Gina put on their happy faces and said they had a good time... rain, wind, constant 6 foot seas, puking people everywhere, cigarette smoke and all! I'm not sure I would’ve found my happy face while still aboard the boat.

Our first week of summer was spent down in "the Burg" visiting TD's family without TD. We missed him, and he became very ill while we were gone, so that broke my heart too. We had a lot of rain as well, but we were able to have good family time, other than the 36 hours Jacob was throwing up sick. We did make it to the beach one morning. We took our dogs, Grissom and Connor, to the dog beach. Grissomloved swimming and playing in the sand. Gavin thought it was hilarious to see them chase me into the water. The dog beach is very nice, but has dogs running crazy free (duh, dog beach) so we haven't been since before we had Gavin. I really enjoyed taking my baby Gris swimming. Gramma Gina took us to the Great Explorations Children's Museum too, and it was a lot of fun! Gavin played with magnets, pretended to be a weatherman, went in a hurricane tunnel, ventured through a black touch tunnel, dressed up as a firefighter and played grocery store. I loved it too. I really loved having Jacob and Brie there playing with us too. We headed home on Friday so Jacob and Brie could see their dad, but after seeing our aunts, uncles, cousins, and grandparents, we felt accomplished. Oh, and I loved having my hair cut and colored... Thank you, B!!!

Our family did a VBSnight at church the following week and Jacob and Brie had their orthodontist adjustments. Brie's teeth, after only a year, look beautiful, perfectly straight. They complimented her on a job well done wearing her rubber bands and set her up with new bands around the outside of her braces... the last step. Jacob passed his two year mark, but his teeth are coming together and he has promised me he will be wearing his rubber bands this go around. Jacob had his monthly blood work done and neuro exam on June 11th. I was happy that we were able to see our primary doctor here in Tallahassee. All of Jacob's labs returned normal, but Dr. Kelch was concerned that Jacob's balance is getting worse. Since Jacob doesn't have any new left side weakness Jacob got the ok to do another month on the Afinitor. I am also happy to report that the painful mouth sores Jacob was dealing with are gone and he only has one at the moment. Between the carafate prescription mouthwash, vitamin E, and canker sore topical medicine, you would’ve thought the mouth sore would have stuck around for over two weeks, but they didn’t. Really hoping the one he has now will be his last.

Last weekend we made another trip down to St. Pete, this time with TD as our captain. We were so happy to have the honor of seeing our cousin, Erin, graduate from high school. I am so proud of her and can't wait to see what she will do next! We had a nice celebration for her graduation, Gramma Gina's birthday and Father's day. It was nice for TD to be able to see his dad on Father's day for a change. I did miss going to church with my daddy and having dinner with him, but we will do it another time. I know it was hard for Jacob and Brie to not be with their dad on Father's Day, but it was so special to see Erin walk in her graduation gown and be there for the moment that begins her next adventure.

Gavin was invited to participate in another three months at the First Words/CARDS playgroup, so he has been doing that and he's had a week of swimming lessons. I’ve been very proud of him for getting on the kickboard and noodle when I know he is scared. He has yet to allow Ms. Caroline to lay him on his back to float, or to hold his breath under the water, but he is progressing. Doesn't look like we will be getting in too many lessons this week with Tropical Storm Debby lingering above. I know we need the rain, but not all of this rain at once... it really sucks. Our community is having some really bad flooding too. It is very sad.

What else? I joined an online running club, Moms RUN This Town (MRTT), and started a local chapter. I’m loving it! I reconnected with an old friend and had my first run date. Loved that too! I did a virtual 10K and 5K last week. I loved it! J Our entire family hit the pavement to support a little guy named Emmett who had surgery for cranio-something(need to look it up) last week.

You can read about Emmett and his amazing story here:

Gavin and I met friends at our little local zoo, we went swimming and had lunch with Papa Ken, and this past Friday, Jacob, Patrick, Gavin, Nana and I had a great time at WakullaSprings State Park. Saturday morning, Jacob left, and Saturday afternoon we celebrated one of Gavin's close friend’s birthday. Last night we had a nice dinner for TD's birthday with my parents... yes, TD is finally going to be 30 this week!! 30 years old! How lucky am I to have such a young husband! Woot, woot! I love you so much babe!! Jacob gets home on Saturday evening and we should have a fairly normal week. Then Jacob's braces will come off again and we will be headed northto NIH for four days to have Jacob's MRIs, CTs and doctors appointments. Please pray that the Afinitor is doing something positive. Anything!

And this is how I keep my thoughts straight. Thank you for reading!!!

1 comment:

  1. Thanks for sharing. I relate to a lot of your family experiences & lo9ve to hear about what you all are up to!!