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. www.MOPS.org

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: http://www.facebook.com/events/127935770675857/151320735004027/

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!!!

May Wrap Up, Part 1

With Memorial Day quickly approaching, I want to take a moment to remember all of those who have given their lives in service for our great country. I am so thankful for my freedom! I can't begin to comprehend the depth of their sacrifice and the sacrifices of the ones they left behind. I hope God blesses each and every one of them. I will also be praying for our soldiers serving today!


With that said... Aren't you happy it's Friday?! And a three day weekend?! I am! This weekend we have big plans for yard work and general outside clean up. We have been so busy that our yard has suffered a bit. Although the porches have been blown off, the sticks and weeds are taking over and my garden is a mess. I’m very proud that I was able to grow several very small, but very yummy, carrots from seeds this past fall/spring. I’m sad that it’s time to pull up the last few that are still hanging on. I think I will start them earlier this year. Carrots are the first successful thing (other than wildflowers) that I have ever grown from a seed! TD brought home a list of flowers that attract butterflies and we have plans to start a small butterfly garden out back to keep Leonard and Sheldon (my finches) entertained! :) Gavin and I love butterflies too, so I’m excited!

I have a picture blog started (but currently incomplete) of the NF Walk in Orlando we attended the weekend of May 5th. After all these years it was our first NF Walk. It was very small this year, but we have big hopes of it growing as the years go on. The people involved raised $18,316.00 for the Children's Tumor Foundation that only supports NF1, NF2 and Schawannomatosis. I was very proud that our family made up a huge number of the attendees. Jacob was honored with an NF Hero award and TD wrote and spoke about Jacob's bravery. It was a very special moment. It was a shame that Gavin fell sick that morning with a fever and an ear ache. He pushed through, but we didn't get to enjoy our time at the walk the way I had hoped. We had to replace two of our van tires that morning before we could drive back to St. Pete, which was a bit stressful, but being part of the walk was worth it! It will be something we will definitely go to again (and again)!

On May 7th, Jacob, Gavin and I traveled back down to Orlando for Jacob's one month appointment with Dr. Smith. Jacob went to school Monday and we left afterwards. I wish I could say our four hour drive down was uneventful, but unfortunately I had another tire start to separate. Three new tires in one week can really put a hurting on your bank account! By the time we got to Orlando, Sears Automotive was closed and I wasn’t able to take the van in until the next day. At the time, I didn't know what was wrong with my front end, just that I knew I wouldn't be able to drive it home. TD's sister, Rachel, lives in Orlando and her significant other, Joe, (he's too important to just call “boyfriend!”) came and picked the boys and me up for dinner. We were surprised to head down to City Walk for dinner and games. It was my first time at the Nascar Café… And it was delicious! Jacob and Gavin loved the game room and playing with Aunt Rach and Uncle Joe, who spoiled them with all the games they wanted. Watching Jacob drive the Nascar virtual game was pretty amusing, I must admit, and watching patient Rachel play virtual put-put with Gavin over and over and over made my night. We didn't get back to the Ronald McDonald House until after 11:00 pm, but the boys were so happy and had enjoyed themselves so much, it took the sting out of having to go to Hematology and Oncology Clinic in the morning.

We got up super early and headed to the hospital for Jacob to have blood drawn for fasting labs and then drove to Chic-fil-a. As soon as I told Gavin were were taking Jacob to the hospital in Orlando he asked to go play at the "tube thing." I promised him we could go if he was well behaved for our drive. Since we weren't able to get there for ice cream after dinner Monday night, we headed there for breakfast. We ate and Gavin played and then we headed back to clinic. Hillary (ARNP) was really happy that Jacob has been tolerating the Affinitor so well. His labs looked good for the most part. A few things were low, like Jacob’s phosphate, but nothing for us to worry about now. She did Jacob's exam because Dr. Smith was "on service" and Jacob looks good. We discussed whether to increase Jacob's Affinitor dose. It is thought that tegratol, the seizure medicine that Jacob is on, can make the body metabolize other medications quicker than average. Jacob is on a slightly lower dose already than what is recommended for his body weight, but since Jacob was doing so well on the current dose, Hillary wanted to do a "trough" blood test to see the level of Affinitor in Jacob's blood after a 24 hour period. Those labs were sent out to Mayo and were to return in about a week. Hillary already knew that Dr. Pincus wanted to do surgery this summer on Jacob's tumor at C7. I guess her and Leigh Ann, Dr. Pincus' nurse practitioner, are still close.

I talked with her about my conversation from the day before with Dr. Asthagiri. I knew Dr. A would make me feel better about wanting to wait to do the surgery. He said since we are having Jacob watched so closely for any changes that he believes it is still safe for us to wait, but stay prepared for the possibility that it may have to happen very soon. Hillary confirmed that the wait before surgery while on Affinitor is two weeks, which is a safe time frame if Jacob starts showing serious symptoms from the C7 tumor. Judy is watching him too - every Monday at OT. So we have decided to wait and not schedule spinal surgery for Jacob this summer. I would never want to ruin his summer anyway. I would much rather him make up school work. Our summers are sacred! We have not decided what doctor we want to perform the surgery though. The big question left for me is, “To fuse or not to fuse?” Please pray for God to lead me to the right decision when the time comes. So our clinic appointment was short and we were on our way by 11:30. After an hour at Sears Automotive and lunch we were headed back home with a prescription of Affinitor and continued high hopes!

To be continued....

Brie's 8th Grade Class Adventure

Brie is home now and was full of excitement and stories from her 8th grade class trip to Charleston, SC and Washington, DC. 

Monday and Tuesday
Leaving Tallahassee at 5:30 am Monday morning Brie was happy to make it to Charleston, SC for their first stop on their trip.  A few things Brie enjoyed in Charleston was the night time ghost tour in the historic district, eating at Bubba Gumps, a ferry boat ride (well, kind of) with tour of Fort Sumter and a beautiful horse drawn carriage ride through downtown Charleston.

Brie's pics aren't great from her phone (she forgot her Sony camera charger), but they are better than nothing :)

The ferry boat crashed when docking
at Fort Sumter.  Brie said it was
crazy scary!

View from the back of the ferry boat.
The bridge in background looks like the
Sunshine Skyway, but it's the
Arthur Ravenel Jr. Bridge over the Cooper River
connecting Charleston to Mount Pleasant

Fort Sumter

An original battle flag at Fort Sumter
from the Civil War

House Brie thought I would love
in downtown Charleston



Horse drawn carriage





Brie's favorite house in Charleston



Claire being silly at the Tervis store. 
We love our tervis tumblers!!

Wednesday, Thursday, Friday
It's hard to believe how many places were squeezed into three days in Washington, DC, but some how they found time to visit almost everything on their schedule. 
They toured Fords Theatre and Museum, FDR Memorial, Jefferson Memorial, and Dr. Martin Luther King Jr. National Memorial.  Also the National Cathedral with guided tour, and Mount Vernon.  Brie loved the International Spy Museum.  It was one of her favorite things.  They also toured the Capitol, had lunch and walked around Union Station, went to the American History Smithsonian and National Archives. At the Holocaust Museum Brie said she was extremely touched and pained by talking with a Holocaust survivor. I was very proud to see the maturity and depth in my daughter listening to her tell me about this experience.  They visited Arlington National Cemetery, Kennedy Gravesides, Tomb of the Unknown Solider and Changing of the guard.  While at Arlington the kids visited the grave of Robert Allen Wise.  Robert was the first solider from Tallahassee killed in Operation Iraqi Freedom.  He was a graduate of Godby High School and also a classmate of Mr. Wetherington. Robert was an avid soccer player so in his honor, the students placed a signed soccer ball against his headstone. According to Cobb's principle, visiting his grave is something the school has done for the past four years and has been a very powerful and moving experience for the students. This is another experience that was very meaningful to Brie.  Lastly the kids went to the Lincoln Memorial, Korean Memorial, Vietnam Memorial, the Air & Space Museum, Natural History Museum and American History Museum.  Before getting on the bus to make the long trip home the group rode the Metro to shop at the five story Pentagon City Mall.......
I can confidently say I feel like we got our monies worth!  Thank you to Papa and Nana Badger, TD,  Pop Dana and Gramma Gina, Aunt Becky and Uncle Todd, and Papa Billy and GG for making this trip possible for Brie!  I know these are awesome memories she will hold onto forever!

Brie, Madison, and Lauren

 

Capitol

Brie's text to me read "Obama'scrib"
My reply..."Not for long I hope"

WWII Memorial (My favorite memorial)
with the Washington Monument in background

Memorial Gold Stars
Memorial Freedom Wall includes 4,000 gold stars
Each star represents over 1,000 Americans who made the
ultimate sacrifice to preserve world freedom - over
400,000 Americans in all.

The great Lincoln!

Ted Bundy's VW

Bonnie and Clyde Car

For some reason the original electric chair
and lethal injection chair were interesting to B

Brie said the National Cathedral was breathtakingly beautiful.
I hope to go there next DC visit.

Vietnam Wall Memorial

Mr. Wetherington

Really sorry I couldn't get this photo to rotate

I wonder how many somber drives home from Gainesville I’ve made in the last twelve years?  A hundred? Maybe more?  A hundred and one after yesterday.  I always wonder why I allow my thoughts to be consumed with bad memories before and after the testing and clinic appointments.  Is it to torture myself or is it to remind me how much Jacob has been through, and how much as a family we have overcome?  I am almost thankful for the two hour drive home, giving me the much-needed time reflect on the day and to try to find peace before I’m shoved back into life's routines.  Finding peace inside me is a huge work in progress.  I faithfully pray for this on a daily basis.  How can someone find peace in the NF2 storms?  At one time, I would’ve found my favorite bar stool, in my favorite bar, called TD and my favorite friend, and drank until I felt no more pain.  Yesterday I dwelled on the day I got the call at work that Jacob's scan had shown his bilateral vestibular schawannomas for the first time.  The question of Jacob having TS or NF1 was gone.  I had been told to be happy Jacob didn't have NF2, and now they were telling me that’s exactly what he has.  More dreams crushed! That night was a Pockets night for sure.  Casey, thank you for being with me that day and night, crying with me and telling me everything would work out.  For the record, I did not get hammered last night, but I definitely thought about opening a bottle of wine and consuming the entire thing to my head as my husband would say!  During my drive home, I realized how much I have grown, how much I have changed and how love has altered my life.  Loved by God, my husband, my children, my family, my church, and my friends.  This love is how I now find peace in the NF2 storms.  I’m holding on tight because I feel the weather is about to get worse.


 Jacob, Gavin and I went to Shands at the University of Florida yesterday to see Jacob's neurosurgeon, Dr. David Pincus.  We see him once a year, or more if there are any problems or questions.  We were due to see him in January, but I changed it to February so I would have Jacob's scans from NIH.  Then, Dr. Pincus' office changed it to the end of February, and then March, and then April, and finally to May 2nd.  I was very frustrated, but I think very highly of Dr. Pincus and value his opinion.  I had been waiting for months to see what he thought we should do about Jacob's growing tumors.  I sent numerous emails and a very detailed letter attached to Jacob's MRI CD that I mailed, describing the issues we were concerned about and what changes Jacob's scans were showing.  I didn't receive any concern in return.  I didn't press it because Dr. Smith and Dr. A are watching Jacob so closely, but the feeling was there.

 Our wait wasn't a long one to be taken back to the clinic, and it was nice to see Leigh Ann and Dr. Pincus.  After saying hello, Dr. Pincus asked me what he should be looking at on Jacob's scans… Really?  I found myself huffing internally.  His office had been given Jacob's scans from NIH two months ago for them to review and now it was my job to tell them what is of concern? Anyway, I told him about the right frontal lobe tumor, thought to be a low grade glioma, which has grown .5 cm in every direction over the last year.  Dismissing that worry, Dr. Pincus is sure that it isn't of great concern based on what their radiologist thinks. And yes, this the same radiologist who said Jacob's right adrenal gland was attached to the tumor he had removed in January… Moving on. I told him that Jacob's VSs are still growing, though growth had slowed with Jacob on the Avastin last year, but still getting big.  We talked about seeing Dr. Freeman for radio-surgery on the right VS to attempt to preserve hearing (Please work RAD001!!).   I told him the eppys inside Jacob's spinal cord had grown some, but we have been told to leave those alone, that it is best to wait and watch those.  He told us about a patient of his who had to have one removed last year, a story I could have done without at the moment. Lastly, I told him about the big concern over the C7 tumor.  Dr. Pincus left for a short while and did an exam on Jacob when he returned.  After the exam, Dr. Pincus posted up in a chair and said, "Jacob looks great.  I am very unhappy about this tumor at C7.  It should be removed this summer."  My heart dropped into my stomach.  What was I expecting though?  This isn't the first conversation we've had with a doctor about this evil C7 tumor.  Dr. Pincus believes that summer time is good because Jacob is out of school and, in his opinion, we shouldn't wait for it to cause problems.  On a side note, this is one of the harder internal debates to cope with as a parent. Having to make a decision to have a very intrusive surgery when there are no visible signs of affliction. It devastates me. Anyways, Jacob is still strong on his left side and other than some slight "hooking" in his ring and pinky fingers, he isn't showing any signs that the C7 tumor is doing damage.  Dr. Pincus also said he would do small fusing of the spine after removing the tumor.  I asked about recovery and damage to Jacob's left hand and left side.  Dr. Pincus said he feels like the tumor could safely be removed.  This is the second neurosurgeon to NOT go over the major risks of surgery with me, talking to me about the surgery as if it were easy breezy.  I want the whole truth and nothing but the truth!  I know, without a doubt, this is a huge and serious surgery.  Things like complete paralysis could happen.  I did tell Dr. Pincus that we also had an interest in having the surgery at NIH when the time comes to help with their studies.  Dr. Pincus said the tumor could be sent to NIH if that would help us with our decision.  Jacob went on to have a casual conversation with Dr. Pincus about the deer he killed and his summer plans.  My mind whirled and continues to spin now.

 Jacob and I talked about it on the way home before he fell asleep and he said he doesn't have a preference as to which doctor or which hospital he has the spinal surgery.  Jacob and I both agree that NIH is special because of their commitment to finding a cure for NF2 and their outstanding care for their patients.  I think both Dr. Pincus and Dr. Asthagiri are capable.  Jacob and I like both doctors very much.  I am concerned about Dr. A not wanting to fuse Jacob's spine at the time of surgery.  I am concerned about Shands being so busy (Dr. Pincus' excuse as to why we kept getting bumped) and the arrogance (or over- confidence?) that this surgery is not complicated.

 I put in a call to Dr. Asthagiri and will feel better after I speak to him.  Jacob says he's "ok" and we are praying that this new medicine Jacob is on is going to be miraculous.