Surgery in January

As I sat patiently waiting for Jake to come out from having the stress test I hear the nurse answer a phone call from Jake's doctor. He had been paged and was returning the call... First thoughts, What's the matter with my kid... Second thought.. Really, You have to answer the phones in front of the waiting room...Then  I see the doctor walk by... now I'm really thinking what is wrong. Finally after wait what seemed like forever, Jake comes out and said they didn't do the stress echo test... The whole reason we came up was for that test... My thoughts again.. why...  But Jake wasn't sure why, He said they did two echocardiograms on two different machines.. but they were resting echos..
Noreen, the nurse practitioner, came in and filled us in that they didn't do the stress echo because Jake resting echo showed blockage and his gradient was measured at I believe she said 67,  the magic number is 50. If a patient scores over 50, they are a candidate for surgery. Also, the size of his heart wall has increased in size since our last visit in April.  Dr. Maron came in and discussed the risks of the surgery. Which he said  better quality of life occurs in 80 to 90% percent of cases after surgery. Risk of something bad happening less than 1%.  He sent us to see Dr. Rastegar, the cardiothoracic surgeon.   He is super nice, and literally explain how he will go in and cut the enlarged muscle out from the inside of Jake's heart.  He doesn't actually cut the heart in in half to get inside, he goes through a valve into the heart and cuts it out that way.
When they asked Jake how he felt about the surgery, He just said he wanted to wait until after December so he can graduate.  He said the 6 to 8 week recovery time is almost a quarter of school.  The doctors respected his choice and we will be scheduling the surgery for January.

We made the most of the trip and actually did a little sight seeing, with many, many breaks for Jake to rest.  But I'm so glad Jake got to get out and see some of the city, he really does love history. We watched a movie based in Boston , then went out and found some of the places in the movie, which was pretty cool. We walked the freedom trail, then fed squirrels and pigeons in the park.

Now, as a mom, I'm scared... I hope we are making the right choices. I know the surgery is the only way to make him better but how horrible am I that I feel relieved that he is severe enough that they are going to do the surgery. I just want him better. There is no cure. He will always have HCM, but the surgery will improve his quality of life.  He is 19 and sleeps more than my dad. I want him to be a normal 19 year old.  So in my sick and twisted mind I want him to have surgery and that breaks my heart because I don't want him to go through pain. 
True story about me... I couldn't get Jennifer's ears pierced when she was a baby because I couldn't put her through pain because for something I wanted, even though I think pierced ears on babies is SO cute. I couldn't do it to my little girl.  When she was old enough to decide she wanted to have her ears pierced she got them done.. but that was her own choice to go through the pain..
So...It literally breaks my heart that I want this surgery for Jake and feel like I'm pushing for it...I know it's different .. but it just doesn't seem right that I want him to have surgery. 
Being a mom has so many joys... but this part of being a mom sucks...

Calling all Super Powers!

 I have to admit, I'm nervous. I just can't tell what I'm more nervous about, what the doctors will tell us, or whether or not I get us lost. Truth be told, I have been know to get lost while following others. How am I going to find our way to the baggage claim area let alone any restaurants. That is the main reason we booked the hotel directly across the street from the hospital. Also, because we don't have to rent a car or get a taxi except to and from the airport.
    Secretly, I think my husband is like a super hero. I seem to be the damsel in distress quite often, not knowing my exact whereabouts.  I find it amazing that I can call him from anywhere and say honey, there is a Seven Eleven on this corner and a Taco Bell on the that corner, and he can tell me exactly where I am and which way I need to go. I think his super powers kick in when we are at the airport too, because he always just grabs my hand and leads me to the baggage claim... I 'm not sure how he does it. Are there big signs leading the way that my short  5 ft. stature needs to stand on tip toe to see? He assures me there are signs everywhere.

   We packed for cold weather. In Boston, the low will be 63. For this Florida girl, that's freezing. I hope we have everything in the suite case that we need. I was a little distracted while packing. Gracie Mae is Jake's dog. She totally sensed that we are leaving and climbed into the suitcase. She just wants to go, too. Silly dog.

We fly out tomorrow and have three appointments on Tuesday , then we will fly home Wednesday. It's a short trip, but hopefully, a productive one. One of the doctors here suggested I take a flash drive for downloading all Jake's test or medical information, so each new doctor that sees him will have all the information they need.  Also, I think it will be pretty cool to check out the MRI pictures.

Well, I have set out my big girl panties; crispy and clean and ready for tomorrows adventure...in hopes that they will allow me to hone in on some of the my husbands' superpowers, so that I can lead my little boy hopefully to the correct airport terminal and on to the right plane... I wonder if I write a big S for SUPERMOM on my big girl panties would the scanner at the airport pick it up? well.......all I can say is ....I'm packed... and I'm as ready as I'll ever be...

Seven short days!

   Two weeks ago, I went and got a tattoo in honor of my little boy. I couldn't decide what to get, then it hit me. Don't stop believing, partly because it is what he sang when they wheeled him out of the operating room, partly because it says it all. Don't stop believing he will get better, Don't stop believing that god will guide us through this. Just plan and simple Don't stop believing...

  Finally, the night I had been waiting months for...  the Night Ranger, Foreigner, and Journey concert. I had been worried for a few weeks about how the night was going to go. There is a lot of walking involved, would Jake be able to handle it?  The weather forecast was predicting rain for the night of the concert, would it rain and ruin the evening?  But then everything started looking up, the weather looked like it might rain Sunday instead of Saturday and suddenly Jake wasn't taking afternoon naps. WOOHOO.... around noon the day of the concert I took a nap ( yep, you read that right, I took a nap.. not Jake.. I know NOT normal) ... Bill woke me up to get ready and... I was miserable, seriously MiSeRaBLE.  I did the Netty pot thing, took some Dayquil, Ginger root and Advil. My throat was scratching and sore so I bought a frozen drink to cool it.  Just as the concert began I started feeling pretty good... ok it could of been the frozen concoction.. but the point is I wasn't feeling miserable and could enjoy the evening. Yeah.. Night Ranger played, then Foreigner came on stage and they Rocked it... then when Journey began to sing their second song my meds began to wear off and I was miserable again... headache, stuff nose, sore throat, achy body, fever.... Bill looked at me and asked If I wanted to go home... Yeah I must of looked that bad.  All I could think was I waited months for this.. I'm not leaving, I don't care how crappy I feel... Then it happened...  My favorite part of the evening, when Journey came back out and sang Don't stop Believing . Bill, Jenn, Jake & I all played our best air guitar and sang as loud as we could. We ROCK IT!  It was truly awesome. Definitely,  a moment I will never forget!

In seven short days we return to Boston to find out if Jake is a candidate for the next surgery.... The next seven days... may turn into the longest seven days of my life. It will only be Jake & I this time. I'm nervous about so many things.  I hope we get some answers, does he need the myectomy, and if so when. I hope I can remember everything the doctors say.... I hope the trip goes smoothly.  I hope this cold/flu is gone by then AND I pray Jake doesn't catch it...

I'm tired

I'm tired... as I type that I have a feeling I don't even know what tired is....  Jake came home from school again today, He called asking to be picked up at 8:35, and was asleep by 9:30a.m.. He woke up at 2:40 then went back to bed at 4:00, and didn't wake up again until 7:56p.m....and at 9:47 p.m. he came in to say good night.  What I'm struggling with today is.. he didn't do ANYTHING strenuous yesterday.  After school, I picked him up and went to the doctor, we came home, ate dinner, he played a video game and went to bed. So Why? Why is he so exhausted?

I called Boston today on my lunch break. They want to talk to the doctor down here, to see about upping Jake's medicine to help alleviate the chest pain. They did tell me that the genetic testing came back negative, which just means they were unable to pinpoint the gene. It only has a 40% success rate, so were weren't expecting much. 

I'm having a hard time dealing with the fact that I'm tired.... but not as tired as my 19 year old son...

life goes on!

 Being we are going to Boston in 19 days,  the cardiologist  didn't want to put Jake through more test that the doctors in Boston will surely repeated up there. He did do an EKG because Jake was having chest pain while we were there.  I'd love to say the test results were fine, or normal... but that's not the case.  Jake is an anomaly. The nurse said she was getting Jake's file ready to send in for a case study.  The doctor suggested we call Boston and let them know Jake is having chest pains and suggested that they do a Cardiac catheterization while we are up there. He said the chest pains will not kill him, but we don't want to ignore them either. He said the pain is probably from the lack of oxygen going to his heart.  He said it's best to have Jake rest so his muscles can relax, hopefully alleviating the pressure. 
     Hmm... let me get this straight.... Jake is an anomaly... well that isn't a surprise.  If you know Jake,  he has always been a bit different.... lol... He is such a fun kid. Even through all this crazy stuff, as we sat waiting to see the doctor, he was taking crazy photos with his sisters cellphone. Laughing at what her reaction will be when she discovers it... ( Jenn, you should check your pictures..we love you! and be nice to your brother...)
   Jake is still being really good about eating the right foods. I pack his lunch for him, bless his heart, because you know it isn't cool to bring your lunch in high school ! But you know what, he is surviving... life goes on... day by day.. we are surviving... living with this.... and don't get me wrong it still sucks... but today the suckiness isn't so bad.

 
  

Ironic

Funny how ironic some things are... I can't sleep and it seems Jake can't stay awake...

  Wednesday was open house at the high school. We walked from class to class to meet all Jake's teachers. While we met Jennifer's teachers, Jake stayed in one class to finish a test ( yes... while wearing his cap & gown, It gives him motivation) Before we left he started feeling some pressure in his chest. So when we got home about 8:30  he went right to bed.  He woke up Thursday morning at 6, still complaining of chest pain. He stayed home from school. I called the doctor, they said it's probably nothing, but want to see him on Wednesday ( we won't even go into how annoyed I am over that).  I woke him up at 8 and sent him over to my moms.  He went back to bed at 9:55 and slept until 2:35,  ate lunch and went back to bed around 4:45.  I woke him up for dinner at 8....and was back in bed by 9.... so he was awake for a whopping total of 5 hours...  He usually takes a 3 to 4 hour nap everyday after school. On Wednesday he did not. He helped make brownies before the open house.  Let me just wrap my head around this...my son slept the entire day because he baked brownies and walked around the school?   hmm...,Can I just say something...please...  can I just say I hate this disease...  I do .. I hate it... In my mind I picture myself on the Oprah Winfrey show jumping up and down on her couch saying I hate Hypertrophic Cardiomyopathy.... I know,  not as dramatic as Tom Cruise...
I'm aggravated that I feel helpless. I can't do anything to make it better. We have to pray and wait.  Waiting SUCKS! 
I know he is 19, but when I look at him I still see my little boy...

 
So as I sit here, wide awake while my little boy sleeps, the song that run through my head is Ironic...this verse in particular ....Well life has a funny way of sneaking up on you...When you think everything's okay and everything's going right....And life has a funny way of helping you out when...You think everything's gone wrong and everything blows up in your face......
well it is ironic isn't it...

Rescheduled!

So, I finally got the confirmation, and made  the flight arrangements.  We fly out September 26th. On the 27th we have the Stress Echo at 1, meet with Dr. Maron (the cardiologist) to go over the results at 2:30, then meet with Dr. Rastegar (the cardiothoracic surgeon) at 3.  On the 28th we fly home. Hope everything runs on schedule!

    Jake and I seem to disagree on why he takes a nap every day.. He says he is bored... so he sleeps... however the other day Jake had a friend over... and he asked me to take the boy home so Jake could take a nap....  Bored? I think not...

Just another turn on the roller coaster.

Truthfully, I've never been much of a fan of roller coasters... love the feel of the wind in my hair... but those sudden twists and jerky turns always leave my stomach queasy..... such is life... We were all set...  Fly out on the 22.  Had three appointments scheduled for  the 23rd.  11 am- stress test , 1pm- meet to go over results, & 3pm- meet with the Cardiothoracic surgeon... Then fly home the 24th.  Angel flight booked our flight for us again. Everything was planned....But then came the sudden twist ...  this week we got a call that the Cardiothoracic Surgeon's vacation home burnt down, and he will be taking the week of the 22nd  off to take care of the details. So now, we are waiting for a new appointment date.  I should get confirmation on the date, hopefully Monday from the doctor's office.
 When we do get up there they will do a stress test to see if Jake is a candidate for surgery.  His pressure gradient has to be above 50mm Hg at rest or with physiological exercise to be a candidate.   A test they did on Jake here in Holiday back on March 4th show a peak LVOT Gradient 59mm Hg at rest. Boston has more experienced personel  doing the test , so I'll wait to see what their test says before I stress to much. What I do understand is that just because his septum thickness is massive doesn't necessarily mean he needs the surgery right away. It depends on if there is an obstruction. So now we wait...  Have I mentioned before I am a planner... I'm not so good at waiting... and not knowing... it drives me crazy.

On a positive note... Today Jake had a few friends over to celebrate his birthday, which isn't actually until the 13th.  Nothing to active... video games and movies, and he stayed awake the whole day. I know it seems silly, but I honestly think the last time he stayed awake the whole day, was in June for Jennifer birthday, but he was the first to sleep on the car ride home.

                                                               Jake and his buddies!

So Proud of Jake!

We drove down to Bonita Springs, in preparation to give an award to Larry Smith from Vital Flight.  Vital Flight coordinates FREE air transportation for individuals with compassionate, humanitarian or medical needs.  These wonderful pilots donate their time, and aircraft expenses including fuel and landing fees to help people in need.  And Yes, that was us in April...when I was hit with the news that we had to go to Boston and had to go by Monday....  I was so overwhelmed... But my sister ( did I mention my sister is A ROCKSTAR) called  Larry Smith.  He is our go to guy, and he is so very humble. He is amazing. ( Seriously, I was plotting a way to duct tape him, throw him in my trunk and bring him home with me, I just love him that much...LOL) He made it possible for us to get to Boston. Usually, they need a bit more time, but they still pulled through for us.  Jake was honored to give Mr. Smith an award to thank him for going above and beyond. And I have to say I'm very proud of my little man. He did a great job.  Before Jake gave the award , there was a wonderful slide show, My sister & I worked on it a little but then one of my sister's coworkers took it & and ran... and what an amazing job, he did.  I am having difficulties posting the slide show and video on the blog. So until I can figure it out, You'll just have to take my word for it.  Way to go Jake. 

   We really had an amazing time. Again, I must say God is so good. I was able to relax and enjoy the amazing view from our room. You know he planned the timing of finding out we had to go to Boston ( I was so stressed, you can tell by the bags under my eyes, I've been told)  and then hooking me up with this amazing room with an incredible view at no out of pocket cost to us. So we can focus our monetary efforts on getting Jake back to Boston.  I know that he will continue to lead us in the right direction.  Mr. Smith has already told me to call vital flight and start making the arrangements for our flight up there ( I told you he was amazing, If only I could of found that duct tape) ...  We are definitely tightening our belts with our spending, using coupons, and going out less...I've have already wiped out most of my savings and retirement..but you know that's not important to me.... it never has been... Having a happy, healthy family is all that matters... and

God is leading us on that path...  

I have been blessed with the most amazing husband, and wonderful children... and the best friends... so now we just have to work on the healthy part... and we are close... oh so close...  we will get there... So through my moments of insanity when I just can't understand why....  I look at all I have to be grateful for.... and realize I am so very blessed!

   

    

Going back to Boston

   The doctors have been saying Jake needs to be active because he is gaining a bit of weight.  We have tried to get him to walk the dogs... no interest. We tried swimming... not for him. So we made an appointment with a trainer at the YMCA.  The appointment was at 7.  He worked out with the trainer who showed him things he could do, even with his limitation until about 7:45. Then came home and slept until 3 o'clock in the afternoon.  And then went to bed and slept throughout the night..  We tried it again on Friday,  he worked out for a little less than a half hour.  We got home at 10, and he slept.  I woke him up at 4:30.  I called the doctor... fatigue after exertion is a sign after all.... So we went to see the cardiologist this morning...and He is concerned as well.....  He said we should pull the plug on waiting and Call Boston.  So after our second Doctor appointment today...  I called the doctor in Boston, and they said our cardiologist had already called and Dr. Maron wants to see Jake to do a stress echo, and he wants him to see another doctor while we are up there.. but I forgot to ask who the other doctor was and why we need to see him...  ( so that is on my to do list..) Our cardiologist said there is a test they can do with a catheter that will tell exactly what the gradient is. This will tell if he needs the surgery now  or if we can wait.  The office manager made our appointment for the next available slot... August 23rd.
 Ok ... I realize this sounds insane.... I have been a mess all day. I  CALLED the doctor... because I was concerned.... Why is it a shock that they want us to go to Boston?  I guess deep down I was hoping I was just being a paranoid mother. Like when he was little and I took him to the doctor for every little bump or bruise.. or tug at the ear.. fearful of an ear infection...  I thought I was just being over protective and thought they'd say....  "No , not time yet"... AND I'm shocked that I feel like that because I 've been going insane wondering why they are waiting and not just jumping in and doing they myectomy now? They know it needs to be done!  So yeah! INSANE describes my emotions right now....
    And just to be clear.. at this time we do not have the myectomy scheduled.... we are only going up to have more tests done to see if it is time to proceed with the myectomy... I do not know if they decide it is time... if they will do it while we are there.. or if they will send us home with a date..  I really just don't know.... I'm not sure what plan God has in store for us, and I am trying to have faith that although I may not be able to picture the plan... there is one.  I just don't understand how getting an appointment after school is back in session works in the plan... when I have the whole summer off? I know,  I know.. I can't see the big picture from were I sit.. and I am sure it will all work out in the end.  Just have faith...
So Now,  I have 55 days to stress, worry and research about everything. Jacob needs to continue to exercise. So I was thinking... What if he works out at night???? Will he just get a better night sleep,  and wake up at a descent time in the morning.  This might be a great idea! Ding Ding Ding.. we have a winner!  ... well I hope it is a winner...  We will try it tomorrow...

Don't Stop Believing!

Ok Sing it with me... "Some will win, some will lose ...Some were born to sing the blues ...Oh, the movie never ends .....It goes on and on and on and on...."  Because Jake came out of surgery singing Don't Stop Believing, when I heard Journey was coming to town in Septemeber.... I HAD to buy tickets.... Right? How could I not? 

My goal is to keep Jake busy this summer. Get him out of the house, up and moving. He still takes a nap every day .. sometime two.... Today he seriously slept most of the day...He is also still gaining weight... umm...yeah, NOT GOOD! Tonight we got him in the pool and tried to persuade him into doing water aerobics....but yeah .. he wasn't feeling it...  He did stay moving, so it's a start.

I love the old saying laughter is the best medicine. It got me thinking, ( yes sometimes, even , i do)  so we took Jake to his first comedy club show at Sidesplitters.  He thought it was hilarious and laughed throughout the entire show.  He has been staying busy going to his friend's houses... and he has only had one rough day dealing with the depression. I have to say I am really impressed with Jake's friends. Lee, Clayton, Ryne, Taylor and Joey are just amazing, great kids that have really been there for Jake to help him through all of this.

For Jennifer's 16th birthday we went to Disney Quest. I worried that it would be too much for Jake.  I thought for sure he would be too exhausted to enjoy the day or want to leave so he could take a nap.  However ... I am very happy to report that Jake did awesome.  He went up and down the stairs with no problem at all, no shortness of breath.... WOOHOO! We walked around Downtown Disney. The kids made light sabers at Once Upon a Toy.  (as soon as I typed that a deep voice in the back of my head was saying... may the FORCE be with you! ... you can admit it.. you thought it too! LOL ) The only time he let on that he was tired was when we stopped for lunch and he asked Jenn to fill his drink so he didn't have to get up... and he zonked out on the ride home.
 

Next week,  Jake will be presenting an award to the man who made it possible for us to fly to Boston. We are working on a slide show for the presentation. Lots to look forward to.  Keeping our heads held high and enjoying life, because life is short... and unpredictable.

Playing the waiting game?

A large number of people diagnosed with HCM,  are diagnosed with depression before they are diagnosed with HCM.  Jake has been battling depression, he has his good days and his bad days.  Saturday was a bad day.  He was in a mood... and repeatedly swung his arms over his head. Because of the placement of the lead wire in the ICD,  this is frowned upon.  He could pull the lead wire out, and repetitive movement could wear the wire out.
I honestly feel defeated sometimes, everything we are doing to take a few steps forward, and in a minute of a fit of depression,  he could of destroyed it.  

  On Monday, Jake came home early from school because he was having chest pains.  The doctor did an EKG and sent us for x-rays to make sure the lead wire was still intact.  I stressed my aggravation to the doctor, "why can't they just do the myectomy" I mean seriously, they said they usually do a myectomy when someones septum is as large as Jake's but because he is showing no symptoms they want to wait... seriously why? Our doctor  explained  that  right now Jake is living a normal life. Yeah he is limited to no strenuous activities, and he is tired all the time. BUT.... A myectomy is a serious surgery, there can be complications, he could have a stroke while on the table.  So ok. now I get it... I am still frustrated. I truly don't believe that is the "plan" in store for Jake. But I will wait patiently and not push the issue until Jake shows more symptoms.  I sit and wait .... waiting for my son to get worse.  They call it the waiting game...  all I can say is THIS GAME SUCKS!
    Jacob came home after school on Wednesday and took a nap. He slept until 7p.m. Woke up ate dinner and went back to bed about 9:30. 

Great News!

Jennifer's MRI was yesterday. She had a little complication with a defective IV, which popped off as they injected the contrast. But she did awesome, and was so brave. (She seriously has a fear of needles.) I had no idea how worried I really was, until the cardiologist said that her septum is within NORMAL range. YEAH! He showed me the images, and the tears started coming. I can't even describe the relief I feel.  Her arm is pretty sorry today, but she is just fine!
   On Tuesday, We went to have the ICD read. It seriously took about five minutes.  It was our first time having it read in the office, I  didn't know what to expect. It was quick and painless, the ICD is working fine. We get it checked again in three months. 

   After a scab fell off, Jake noticed a string hanging from the incision. He went to pull it off and realized it was attached. So they took care of that on Tuesday also, cutting off Jake's "pull string".
He is doing pretty good. His spirits are up, and he felt well enough to attend Jenn's JROTC award night. He even wants to start walking the dogs again. So tonight,  we will give it a try.    :-)

Frustrated

   I'm having a hard time dealing with life today.  I just want to cry... and that makes me mad, I feel like I have no right to cry. How can I cry and have a pity party , when I know Wes Leonards' mother would be thrilled to have her son tired but alive....  I know we are the lucky ones. Jake is alive. We are so blessed.  But my heart hurts, I still worry even though I truly believe god has a plan for him.  I just want my little boy better.
    Jacob came home early from school on Wednesday because he was feeling pressure in his chest.  The pressure let up when he stood up but when he laid down if got worse. He took a four hour nap.  I called the Doctor and he said to bring him in. So Thursday we went to in and they did an echocardiogram to see if there was any fluid around his heart.  The doctor came in to look at the images and said, " That is the mother of all septums."  He also tested the gradient again. There was a discrepancy between the gradient they did ( 59mm Hg at Rest)  and they one in Boston ( 30mm Hg) , so they checked it again.  And this time it came up 45mm Hg.  Ok.. So again I'm not a doctor.. but this is what I found... "Left Ventricular Outflow Tract obstruction at rest ( >30mm Hg) is a strong predictor of progression to severe symptoms of heart failure and of death. " So with that.. none of the scores look good.
The doctor told us that normally when a patient has a septum as large as Jake's 36mm ( normal size is between 6-12mm ...so yeah.. three times the size it should be... ) they go right in and gut it out... but because Jake is not having any symptoms they are waiting until it impedes his life... UGGHHHH!  I hate that part. I really don't want him to go through any pain and I know this is a huge major surgery. But I want him better. I want him to have energy. They know it needs to be done.. why wait until he gets worse?  The doctor said that the pressure was just a symptom and keep him updated if he has anymore... Then we will proceed with the myectomy...How do you look for symptoms when there are really no symptoms.. seriously this is the list...  Heck... with this list I need a myectomy... LOL.

Hypertrophic cardiomyopathy symptoms include:

• Shortness of breath, especially during exercise or exertion
• Chest pain, especially during exercise or exertion
• Fainting, especially during exercise or exertion
• Dizziness
• Fatigue
• Heart palpitations — the sensation of rapid, fluttering or pounding heartbeat

He did say he is concerned about Jake's weight gain.  So we are going to start walking the dogs again to get him moving. I think he is afraid to do anything. If his heart rate get to high , the defibrillator will shock him, which will feel similar to being kicked in the chest by a horse.... so yeah I don't blame him for wanting to take it easy.  But he needs to be more active.

  Last night we thought it would be fun to take the kids to the local Monster truck show, except Jake was too tired and didn't want to go.  He stayed home with his grandparents, and we went with Jenn & met Amanda there.  Yeah... and how fun was that? knowing your son is too tired to walk to a bleacher and sit and watch a show.  We ended up leaving early because I was miserable.  I couldn't have a good time worrying about him.

Jenni's appointment is scheduled!

Busy as a bee... (where does that come from? Bees never look too busy to me... )I'm overwhelmed. I barely have my head above water....  I have a lot on my mind and a busy schedule... lots of appointments coming up. Yesterday, I spent my planning period on the phone making doctor appointments, and YES,  I finally got through to Shands,(yeah) Jenni's appointment is on the 18th.  Jake had an appointment with the psychiatrist yesterday. Jenn & I had a few things we had to pick up at the store , so we didn't get home until close to 9. As I said busy... So this morning, as I showered, in my mind I was going through all the things I need to get done today before Jake's dentist appointment. I had just squirted the conditioner in my hair as Bill, my husband, came in to kiss me goodbye.  He left and I jumped out of the shower, got ready for work, threw a load of clothes in the washer, picked out extra jewelry (because my k students are learning the letter J), and grabbed a yogurt for lunch.  As I was pulling into the school parking lot, I ran my fingers through my hair and that's when I felt the goo.... WTH is that????  Conditioner....I never washed the conditioner out of my hair. What to do? Oh what to do??? So picture me washing my hair out in the sink in the kindergarten classroom and drying it with paper towels. Then I had to walk out to my car to get my hair brush. Oh My... What a way to start the day! LOL!

   We received Jake's Medical Alert bracelet in the mail on Monday. Jake was SO excited he kissed me... LOL... We spent a lot of time looking for one he thought was cool enough. I mean if he has to wear it all the time. I want it to be something he likes. The funny thing was I wasn't sure what to have engraved on it. The websites didn't specify what the norm is. So being the Rebel I am, I took caution to the wind (LOL) and I  had "Hypertrophic Cardiomyopathy  St. Jude ICD" engraved on the bracelet.  That way if something happens to him, they will know about the ICD, and the brand in case they need to read it.
   We had to reschedule Jake's dentist appointment today, because he forgot to take his antibiotic.  UGGH!  Yeah, he remembered as we got out of the car to walk into the office.  So, I have to take more time off work, which hasn't really been a problem, except I'm running out of sick time.  I am so very thankful to have such an awesome boss.  Seriously,  I left early today, have to leave early Thursday for another dentist appointment, Tuesday I'm taking a half day because Jake needs to get his ICD read,  Wednesday is Jenni's MRI and then the dental appointment we had to reschedule from today is on the 31st. 
   Jake has been feeling good.  He still takes the occasional nap, but nothing like the last post when he slept all day.  He is doing the usual chores around the house, but not much else.