Big, Big News!

 

Our BIG BOY four year old has learned to swim! June 21, 2013 will go down in Gavin's book as the first day he braved the water alone!

 

Gavin took swimming lessons over the past two summers, hoping that he’d take to the water like a guppy. At age two, we did a mommy and me class at the city pool, and last summer G took a two-week three year old class at the same city pool.  He did not learn to swim.  As Gavin's love for fishing has grown and his curiosity of the outdoors continues to flourish, being around water and him not being able to swim has made TD and me very nervous.  We told G in May that this summer was going to be his summer to brave the swim!  I was aware that this could’ve very well NOT been his summer to swim, but I'm pretty sure there was no “option B” in TD's mind.  Jacob and Brie were equipped with the ability to swim at four years old but didn't conquer their fear until much older, and although I don't mind pushing our kids to achieve things, I also worry about pushing too hard.  The solution was signing G up for swimming lessons the first week of summer with a professional, choosing Alan Cox Aquatics at the Piney Z Plantation.

 

Leaving him no time to "play" his own way in the water and getting right down to business, Matt, the instructor at Alan Cox, was fantastic.  He was very good with the kids and worked with them on holding their breath, going under the water, using a kick board, jumping in, swimming with their arms out, floating and general pool safety.  I loved the relaxed atmosphere and the fact that G and I could stay and play in the water afterwards!  Perqs are very important!  I also loved that the pool has a huge stair area for the kids to play comfortably until they are ready to go out on their own. 

 

This year was the first year G's coach was a man so I'm not sure if that helped, but after two weeks swimming every morning with Matt for an hour, and then with me for another hour, G had all the information he needed to swim.  All that was left was to conquer his fear.  We traded in his puddle jumper for a dollar store super-skinny noodle and we had three beautiful mornings of swimming in the shallow shores at the beach in St. Pete last week.  Gavin did not agree that it was the right time to swim.  He played very well without floaties and went under the water, but he just wouldn’t let himself swim!

 

Friday was our first day back in the pool since his swimming lessons, and when Jac, Brie and I took G to swim at Killearn, it clicked!  Gavin swam!  Under the water, holding his breath, the whole 9 yards.  We went back with TD on Saturday so he could show daddy that he's part fish now!  We had so much fun! Gavin still refuses to float on his back, but he's working on it.  We can finally have some level of comfort on our water-bound adventures!

 

We are very proud!! Beyond proud.  We’re a happy, water-loving Aquarius mama and crabby daddy!

 

Great job, Gavin!

Happy Friday Team Jacob G! Happy Mother's Day to all you mamas and Happy sweet 16 birthday to Chason Grimes!!

I just wanted to write a quick note and let everyone know that Jacob is doing great!!!

He's really recovered well from this last fusion surgery! 

I was a happy mama watching Jacob and G play their form of kick ball at our picnic on Tuesday and seeing Jacob get to be the big the big brother that he loves to be, chasing G around the playground at Tom Brown. 

Jacob has started back with OT and PT and his left hand is getting better at each appointment. 

We got a great home bound teacher coming in working with Jacob three times a week and Jac is doing pretty good with the work he's been given. I see a huge difference in Jac without the stress of six hours of school every day. 

Jacob has started back to Scouts and is working on a Bird merit badge. One step closer to Eagle!! 

Now I pray for it to last! Jacob needs time to enjoy his life, to live without pain and to continue to heal physically and emotionally with less stress!!

We go to Shands next week for post op and NIH July. 

Past 3 days...

April 8, 2013 Monday night:

Good evening family and friends. I just wanted to check in with everyone and
let you know Jacob is good to go for surgery tomorrow. Today Jacob had pre-op with neuro-surgery,
labs, prescriptions, and pre-anesthesia.
Other than the lab refusing to use Jacob’s port to draw blood, today was
long, but uneventful. We were so happy
he did not have to be admitted for traction and we have been able to have a
free evening in Gainesville. Jacob and I
enjoyed a nice dinner at Chilli’s and dessert at Cold Stone Creamery. I went for a short run and Jacob has spent
the evening watching the second Tooth Fairy movie with Larry the Cable Guy and
Anger Management. When did he get old
enough for the latter? Anyway, he’s all scrubbed up with his antibacterial pre
surgical wash and as ready as he can be for tomorrow. We are to report to the hospital at 6:00 am
and Jacob’s surgery is scheduled for 8:00.
We were told by our nurse practitioner that surgery should be done a
little after lunch. We also asked if the
hardware would be extended or replaced with larger rods. Dr. Pincus said he won’t know until he opens
Jacob up for the procedure. We also
asked if Jacob could expect to lose another rib and they said they “don’t think
so.” Lastly they informed me of the
risks, and of the greater risks of this fusion being higher up and to the base
of the skull. I was informed that they
may even need to make an incision in the front of Jacob’s neck (throat area)
and go behind his esophagus and place a plate so both sides of the spine are
supported. I reassured them that we want
them to do whatever they think is necessary so Jacob doesn’t have to go through
this again anytime soon.

That is all.
I am sleepy, snotty, sneezing like crazy, missing our other family parts
and worried to pieces about tomorrow.
Jacob is calm and cracking up at whatever he is watching now on his
iPad.

Thank you all for your prayers, love and
support. I will write an update as soon
as I can tomorrow!


Blessings,

Tammy

Apr 9, 2013 8:44 AM
Tuesday April 9, 2013 8:00 am

Jacob checked in at 6:00 am and they immediately took us up to pre op holding. Jacob got his port accessed and vitals taken...and his favorite part of all, undressed for the dreaded gown. We talked to several doctors, none of which that we have met before. Jacob was in good spirits. We laughed and joked and he played music for me. Jacob did get upset when the Neuro surgeon went over how high up Jacob's new incision will be, or so he said it will be all the way up to the middle of the back of Jacob's skull. This was the first we heard of this so we'll see how Jacob looks in recovery. We didn't see Dr. Pincus, the operating surgeon, yesterday or this morning.
I'm waiting on TD to get here and Jacob's dad and family will be here sometime today as well. So Jacob will have a lot of loved ones to wake up to.
Now we wait.

Wednesday April 10, 2013

Last night was a bit rough and, considering how well Jacob was doing after Recovery (which has become a nightmare thanks to the x-ray crew… Thank goodness he doesn't remember it…), a bit unexpected as well.

Last night Jacob was plagued with a pretty horrible case of the shakes and nausea. After throwing up everywhere and fighting hard to get his pain under control without making him sick, we settled in around 1:30am only to have a new patient admitted to our room. You may recall that during the first fusion recovery, Jacob’s roommate was a motorcross child (maybe 8?) that broke his collar bone and cried the entire time for his grandparents that were nowhere to be found. Well, we lucked out a little more (if that’s what you can call the situation… “luck”) this time that it was a 17 year old boy who had been in a SUV accident. He was in a collar and under watch due to the fact that the vehicle flipped. This kid walked away with just scratches. I'd say he's got an angel. And aside from us being woken up during the shuffling in, he's been quiet all night, hasn't complained and is very polite. His family hasn't been here since they brought him in. I always find this odd, but I guess all of us are just doing the best we can.

Fast forward to 6:00am, one of Jacobs surgeons came in (we'll call him Dr Far because I can't remember, or pronounce, his full name). He talked to Jacob and looked at his incision. Jacob's was thrilled to know that his incision only extends slightly above his hairline and this time they chose to use glue instead of staples or stitches. They even cut out the old scar and pulled the unaffected skin together in hopes it will look nicer when it heals. A little ray of sunshine! Since J had such a hard time stomaching the dilaudid, they took him off the pump and switched him to oral pain medications. They also started his tordol!! Jacob ate a little breakfast and got up for the first time and took some steps. Dr Pincus and Leigh Ann, our nurse, came in and saw Jacob. They reviewed Jacobs neuro exams and said he could go home whenever he was ready.

Since I started this post earlier this morning, Jacob has eaten well, taken a shower and done PT. He's really doing great. His pain is being controlled well and he had a nice visit with his dad and step mom. Jacob even said he’s ready to go home. I talked him into staying tonight. One more night.
Thank you all for your support. I know he has a long recovery but the healing has begun! Thank you God!!

We Run for Jacob (aka “But I had no idea!) 

Most of you are aware of our wonderful group, Moms Run This Town, so I’ll try to keep my probably-way-over-the-top adoration for this truly outstanding community of women to a minimum (or not…). I love being the Tallahassee chapter leader, and as our group continued (and continues!) to blossom, becoming much more active not only locally, but statewide and nationally as well, I realized that it was in the best interest of everyone to recruit help to keep up with, well, everything.  I recently reached out to my running partner in crime, Tammy, to help me co-lead the chapter, and I must say, I did a dang good job picking the best candidate!  Tammy is the perfect mama for the job, sharing our love for running and bringing a very active approach to leadership!  Little did I know her first project would be for me, for my son and for the cause nearest and dearest to my heart.  

I was excited to run in the 38^th Springtime Tallahassee 1 mile/5K/10K, a popular local race with a challenging and hilly course, this past Saturday.  The fact that it was local was a plus, but I had no idea exactly how special this race was going to be.  

Gavin had a tee ball game at 9am on Saturday, so I tried really hard to get out of carpooling to the race on Saturday morning. I wanted to run the race and rush to the ball field (since I haven’t yet figured out how to teleport or clone myself…).  Tammy insisted I ride with her, but wouldn't tell me why.  Trusting her completely, I figured she was doing something nice for me (because that's the amazing person she is!), but I had no idea! 

On Friday night, our group's Facebook board was filled with "Flat Mama" photos, a tradition of posting our outfits and gear for the next day.  I loved the fact that so many members were racing Saturday and loved all the cute outfits even more!  When Tammy showed up Saturday morning, she (oddly) asked to come in with her hubby, Harley, in tow with his fancy camera.  She was bundled up in her running jacket and not in her posted flat mama!  Tammy had a hand full of shirts and a bag of ribbon.  Under her running jacket was an awesome “We Run for Jacob” shirt with the inspiring words, “Love, Strength, and Wisdom” surrounding a blue and green ribbon with the signature MRTT runner girl (my absolute favorite little decal!) in the middle. As I write this, remembering this moment, my eyes are filled with tears of joy!  And guess what?  I STILL had no idea! 

Tammy had a shirt for me and for everyone in our family. After happy tears, pictures and some shirt surgery, including but not limited to cutting sleeves and adding ribbon, we were on our way to run the 10K.  I spent the next 15 minutes in wonder, contemplating how special it was to have someone so kind in my life (you know, other than my wonderful immediate family), to make shirts for me, for herself and for my family.  We made the hike up the hill to Monroe Street and, eventually, to the Courthouse lawn.  We scheduled a MRTT photo meet-up prior to the race, and I was proud as punch to wear my “We Run for Jacob” shirt!   

When we arrived at the rendezvous location, all of our members running the Springtime donned “We run for Jacob” shirts!  ALL OF THEM.  My heart pounded.  My head spun.  My eyes… yeah, yeah, you all know where this is going.  Surprise!  I was completely stunned and overwhelmingly amazed with such a HUGE show of support!  After many loving hugs and heartfelt thank-you’s, Tammy informed me that, thanks to a series of people, thoughts and events, she was able to raise $1,000 to be donated to the Children's Tumor Foundation, the leading provider of Neurofibromatosis research and support for families living with NF1, NF2 and Schwannomatosis.  One thousand dollars!  How awesome is that!?!  These acts, acts of love and support from my best friend and from those that have never met me or my son, went so far above and beyond! 

Thank you, Tammy, for initiating and mobilizing such a wonderful series of actions to make a difference for my son and for so many others I care about!  You are truly one of a kind!  Thank you, Laura, for encouraging, and, Jacy, for designing, an awesome shirt!  Thank you, Stirling, for making the design come to fruition.  And thank you to everyone who participated and donated!  It’s cliché, but words seem so hollow when you experience the goodness of kind hearts in this magnitude.  My world is full of love and support, and no words can express my deepest gratitude.  I’m filled with a great peace that I am surrounded by so many caring people.  So far beyond thankful.  I praise God for each and every one of you! 

I discovered something different this race.  The Springtime Tallahassee was my best 10K to date.  I had a fantastic run!  Not because I didn't suffer any side cramps, because I did.  Not because of my time, because it wasn't even close to a personal record.  But because of the runners who ran with me, and who ran for Jacob, my son and my hero.  

As I sit here at the hospital, anticipating Jacob's fourth major surgery in 14 months, I have the beautiful memory of Saturday morning, my love of running and many amazing people who are fighting this battle with me.  

My shirt is washed, packed and ready to be worn tomorrow during Jacob's surgery.  

Thank you all for running for a cause!!!

 

P.S. Jacob loves his shirt and thought that it was "really cool" that so many people are rallying for him and for our beloved NF2 community.  The two words are more than we get for most things from Jacob!

 

Bearer of Bad News

The first several weeks of Jacob's spinal fusion recovery went well.　 He rested at home, played video games and went for walks.　 He was as straight as a board. Although, he wasn't feeling much better than he was prior to the fusion his gait was straighter, his knee pain was mostly gone and some strength had returned to his hand. He started PT and went back to OT.　 He went back to school at 5.5 weeks post-op and started back in Boy Scouts a week or so prior.　 We were very proud that, in a short amount of time, Jacob finally finished several outstanding, incomplete merit badge requirements, his Scout Master Conference and the Board of Review and earned his Life Scout rank!　 There’s only one rank left to complete, and that’s the Eagle! He is officially on his way to Eagle Scout under the guidance of some very generous and well-versed leadership!


Aside from the small struggles of getting Jacob to sit up straight and lay down flat, he was progressing. Fast forward to week seven post-op… We waited until March 14th to schedule Jacob's post-op appointment at Shands with Dr. Pincus' office so that Jacob could also see the neuro-radiosurgeon, Dr. Friedman, regarding options for dealing with the acoustic neuromas (specifically, the right side VS) when the time comes. Jacob’s hearing is still good, but if the VS grows past a certain size threshold, radiosurgery is not an option. The options after traditional neuro-surgery are almost certain to cause functional hearing loss among other possibilities. So we were fact-gathering, and after talking with Dr. Friedman, radiosurgery sounded like a very minimally-invasive treatment.

Back to the appointment… Prior to meeting with Dr. Friedman, Jacob had his post-op with Leigh Anne. After a quick look at Jacob and a discussion about some pain, we were sent to have x-rays. Another little wait, but not too terrible, and we were back in neuro with Leigh Anne and Dr. Pincus, which was a surprise given that he was not supposed to be at the appointment. Jacob’s x-rays showed a 3-word condition, Proximal junctional kyphosis, that means that his spine has basically fallen at the vertebrae above the fusion, causing his pain and which will eventually lead to the screws being pulled out of the original fusion. After a brief discussion with Dr. Pincus, it was clear that the only alternative is another fusion, this time taking the next three vertebrae above the fusion and essentially eliminating Jacob’s up-and-down motion. He’ll still be able to pivot left and right, but it appears that his neck mobility may be considerably hampered. Just when we thought it was safe to be hopeful again…

So we’re gearing up for another, albeit smaller scale, fusion, tentatively set for April 1st. Jacob is in a very uncomfortable neck collar in hopes to avoid another horrible night of traction or any further damage to his cervical spine.

Dr. Pincus said that it could wait long enough for Jacob to enjoy his Spring Break (with a collar), but that it could not wait until after the school year was over. We’re hoping for the best on every front, but it often feels like Jacob (and our family to an extent) is getting constantly bombarded. I wish Jacob could catch a break. He needs it. We all do.

This post is way past due I know! I've been updating Jacob's Facebook Team page via my phone, but haven't been able to get on the computer until tonight.

Here are my posts from the past few days, unedited. It's the easiest way for me to update :)

Wednesday

Jacob had a CT scan and we met with the neuro surgeon and his ARNP for pre op. Today has been awful. The "I told you so" was ugly and I felt like the way the doctor spoke to Jacob today was unkind. When they told us Jacob needed to be admitted and placed into traction I became upset and started asking questions. The doctors' response was very blunt. He told Jacob that if traction didn't work he would have to "break his neck" during surgery. So Jacob spent several hours worried about how horrible a traction was going to be and we were finally taken to a room in Peds around 3:00 pm. Jacob was accessed and given pain medications. The neuro resident used a local numbing agent via needle on either side of Jacob's head where the traction would be screwed in. Jacob laid perfectly still during the procedure. I was so proud of him and moved by his bravery! Watching them place the traction was by far one of the worst things I have ever witnessed be done to my child. Child Life came in and took Gavin to play during the process. TD and Brie are coming down later. We had no idea Jacob would be admitted much less have this horrible traction. The purpose is to stretch his muscles and align his spine. Jacob can't move or get out of bed. His head and neck are suspended and will be until tomorrow.

  

Thursday morning

Last night was hard. They nurses came in to check on Jacob every 30 minutes, to check his vitals and make sure his pain was under control. The resident came in every few hours to put more weight on the traction thingy. Jacob's machine beeped all night and we got very little sleep. I was really glad Brie stayed with us to keep us company. Jacob didn't get a room mate until around 5:30 am. The neuro team came to take Jacob to pre-op at 6:00 am. I was so upset that they transported Jacob to the pre-op area still attached to the traction and 30 lbs hanging from his head. We sat in pre-op until 8:05 am and I said goodbye with a heavy heart. As I am crying Jacob said, "Mama, why are you crying?" I usually can hold it in until he is taken away, but I could not today. He was so brave and said, "I'll see you soon."

Thursday afternoon

Jacob's surgery is over. Sigh. The doctor said he did very well and everything went as planned! His fusion is from C-5 to T-3 We haven't seen Jacob yet, but they will let us know when he is in PICU. Thank you all for your many prayers and support! I will keep everyone updated.

Friday

I'm so happy to log on this afternoon and report that Jacob had a really good recovery day today! After one of the Neuro residents came in this morning at 6:00 am and saw how much pain Jacob was in all night (night two with NO sleep) they ordered an anti inflammatory drug, toradol. Jacob always responds really well with toradol. Jacob's Neuro surgeon came in around 9 am and got him out of bed and showed him his before and after images. Jacob has been up walking with his walker several times and is taking a well deserved nap. He is still on other pain medications but a lower dose. He's eating, drinking and integrating. Tomorrow the dressings come off and he can shower. I think The spot where they removed a rib to use in the fusion may hurt more than the spinal incision.
Jacob continues to amaze me. I am forever grateful for all of your support!!! 

 I will post pics :)

 

 













Saturday morning the bandages came off

Jacob's newest battle scars! The stitches look very different than staples. Jacob's got some new hardware and had a rib removed, grinded and placed to help support his spine. J's Neuro surgeon said they may remove the titanium after about 18 months of healing.

Saturday morning

I am rested and ready to get post op day 2 over and closer to heading home. TD stayed with Jac last night so I could sleep. He said Jacob slept well. The neuro doctor came in and removed Jacob's bandages. Jacob has made the transition from IV pain meds to oral and is not handling it well. It didn't feel well during PT and is struggling with getting comfortable.

Sunday morning

It's 6 am and I am watching the door like a hawk for Jacob's doctor to come in. It was a sleepless, upsetting night in Jacob's room, but not because of Jacob. He's doing pretty good.
Early yesterday afternoon a little boy came up from the ER and was placed in the room with us. He was racing motocross at Gatorback and flipped off his bike. He's had x rays, been taken for a CT, is in a neck collar, can't sit up, eat or drink. He has cried, whimpered and whinnied all night. His machines are constantly beeping. Jacob and I feel so bad for him. It doesn't help that his grandparents keep leaving him and he gets scared.
He has a broken collar bone and tummy cramps. I hope he gets relief soon.
I also hope so much that Jacob gets discharged this morning. Right now wouldn't be too soon. We didn't expect to go home so soon but he's on oral pain meds, eating, drinking and walking. It's time.

The rest of our family and Jacob's family all made it home safely to Tallahassee, St. Pete, and Thomasville last night. Really looking forward to saying the same for us tonight!

Sunday afternoon

Jacob and I are home and he's survived another tough day of transition and recovery. May the at home healing begin!!!



First neighborhood stroll :)

The weekend is here and I’m trying to get my thoughts together, to mentally prepare myself for next week.  Our week went by fast, although our trip to Orlando seemed long at the time.  I went to my first MOPS meeting since the holidays on Wednesday morning and enjoyed a presentation by Verity Health Center's Chiropractor.  All the mommies participated in a twelve minute workout, which I am still sore from, in more spots than one.  I had a very unproductive run today as well.  Not sure if I can blame cross-training (I did some P90X core Tuesday as well), lack of sleep or just feeling like life is beating me down.  Regardless, I am, we are, pushing back and pulling through.

Jacob met his new occupational therapist, Helene, Wednesday afternoon.  I like her very much and she seems very knowledgeable regarding neurological issues and therapies.  Helene tested and measured Jacob's hands and he will resume weekly appointments after he recovers from the surgery next week. I’m guessing (hoping) around week four post-op.  He was able to start back with Judy for his hands around this time after his spinal surgery in August. 

After therapy and picking up Brie from school, we made our way to Orlando.  The four hour ride to Orlando always feels so long after having a full day and I really dislike the Turnpike in the dark.  There are many places that are very dark.  I’ve been fighting the feeling of not liking to drive at night because I don't want to sound like my parents, but I really do not like it.  The on- coming lights are bright and it’s just tiring.  It doesn't help that my glasses were in my stolen purse in October and I have not yet replaced them. 

Our room at the Ronald McDonald House was interesting.  It was called the "Emmett Smith Toast."   Although I am NOT a Gator or Cowboy fan, I do like Emmett Smith.  I have very fond memories watching him play in the Swamp when I was a little girl.  And although I am a die- hard FSU fan, my first college games were with my best friends at University of Florida.  Regardless of these special memories, I found it a bit creepy to have a room full of Smith's portraits.  On every wall.  Staring at us.  All night.  I think Jacob counted 8 different photos of the Hall of Famer.  Anyway, we are always thankful to have a room we can afford at the RMH and would gladly spend many nights with Emmett!  :) 

Thursday was long.  Very long. Jacob's first appointment was at the Heart Institute.  He had an echo-cardiogram and EKG.  We found out later that both tests showed that his heart is healthy.  I need to get a copy of these reports in anticipation that the pain medications Jacob will be given after surgery next week will surely send his heart-rate soaring.  Obviously I’m worried about this happening again.  I had a nightmare this morning about the doctor coming in to tell me that something was wrong with Jacob's heart.  It will be good to have proof that there is not! 

After breakfast, RMH clean up and the playroom, we enjoyed lunch at Chic-fil-a and a visit from the lovely Olivia, Orlando's Moms RUN This Town fearless chapter leader!  I was so excited to see her and it was really cool that we were both wearing our Sandy Hook MRTT fundraiser shirts without planning it.  Gavin had a great time playing with several other kids in the playroom, burning off a small supernova of energy. 

Jacob's clinic appointment wasn't until 2:30 and lasted until 4:30, which isn't long considering some of the appointment lengths (or waits) over the years, but with a four-hour drive home, these afternoon appointments get late.  We learned that Jacob can continue on the lapatinib until the day before surgery and can resume it ten days later.  We will wait to see how Jacob is doing to decide if ten days post op is a good time to resume the chemo.  We also talked about his weight loss and will try a new seizure drug after her recovers from surgery.  Jacob's labs looked perfect and his liver function is healthy. 

Our drive home was an adventure, but with hopes of not boring you with more unwanted details, I will just say we got home at 9:30 pm and we are happy to have survived another day in this crazy life.  Jacob and Brie are at their dad's this weekend and will be home Sunday evening.  Monday will be a nice holiday for us all to relax and hang out together before next week’s chaos.  Brie got her braces off last week.  She looks beautiful!  Tomorrow, she will get her final retainer to keep for her lifetime.  Dr. Cummings did a fantastic job and her braces were worth every bit of the $4,500!!  Jacob is going on year three with his on, but I'm pretty sure he won't go to college in them!  Jacob, Gavin and I will be leaving early Wednesday morning for Gainesville.  Jacob's pre op is at 11:00 and we will get details then.  I’ve been asked about the length of surgery, how the fusion will be preformed, how many days Jacob will be in the hospital and other similar questions.  I don't have any definite answers and will write a post Wednesday night to update everyone!  Until then I hope you all enjoy your three day weekend and start your week off well.