Trucking along.

Time is flying by.  I can't believe my kiddo is 6 years old.  Here is his 6 year picture.  Still quite a ham!

We had a great summer and enjoyed all of the time together.  Dad lost his job at the beginning of summer and fortunately picked up a new one.  This new one didn't start until August, so we were able to spend extra time together.  I continued working through out but I am blessed with an extremely flexible schedule.

We went to see Winter the dolphin in Clearwater with Mom-Mom and Grammy.  It was super hot but worth it.  Cyler was super excited that he was able to see a real super-star.  He had never seen the movie before so we purchased it while we were there.  

We traveled a couple hours up north and visited a retirement home for horses.  They take old horses and let them live their final years with dignity.  Visitors are only allowed 1 day per week and for only a limited number of hours.  There is no riding but there is a lot of feeding.  Admission is 2 carrots per person and the horses LOVE carrots.  It was a great experience for Cyler.  He was able to see how all of their personalities were different. Some of them we trained to be performers and still liked to put on a show.  

Of course summer would not be complete without a couple of trips to Old Town and a visit from uncle Jordan.  

Riding Go Karts with Dad.  1st TIME!!!

 Getting stuck between this two was actually a choice.  He loves his Jordan and his Jayme!

 Grammy time...

Summer was over in the blink of an eye.  It was a lot of fun while it lasted. Everything got crazy all at once. Cyler has started school and is doing very well.  It takes about 4-5 hours a day but we are able to take breaks when needed so that he can dance around and get his wiggles out.  I am so glad we chose to learn at home.  He takes school very seriously.

We are so proud of him.  He is also playing soccer. We did get clearance from his cardiologist.  Cyler had to do a holter monitor because he was showing a different kind of heart beat. He generally has PVC's and a slower heart rate than most.  This time he was showing beats coming from other places within his heart.  The monitor showed that his junction would kick out a beat if he heart rate dropped to low...which is what it is supposed to do.  Sooo...he got the all clear!   His first game was today and he did wonderful. The Coach said Cyler is a natural due to the fact that he was able to easily switch his kicking foot.

Dad even got talked into being a coach since they are short a couple.  Cyler has also joined the 4H club.  He is a clover bud.  Most of the kids are older than him but he seems to do ok.  I like that they are planning some community projects and at the end he will do a public speaking presentation.  I am sure he will do fine.  This kid can TALK.

Growing and Eating!

At the last appointment with Cyler's GI doc he was prescribed a medication that is supposed to make him hungry and in turn get him to "chew" his food.  I told the GI doc that Cyler eats all day long and that he doesn't have a problem with being hungry.  His reply--"try it and you will see".   I truly could not wrap my head around how an appetite stimulant would suppress the sensory reasons Cyler doesn't tolerate textured foods but we would try most anything.

Well it has been a couple of weeks and while he doesn't chew chunky food, he is trying new foods.  He has eaten mashed potatoes from KFC with only a little gravy (used to be more gravy than potato), Jello through a net, pudding with graham cracker dust, mashed (not pureed) avocado, and eating his foods without me adding cream to make them soupy. This may not seem like much to most, but really it is HUGE!!!  He doesn't even put up a fight and there is hardly any panic or gagging.  I think the GI doc is onto something.  

You would think with all this big boy stuff going on that he would be getting ready for school, right?   No such luck!  We were getting ready to sign up with Calvert and all of a sudden our county isn't participating anymore.  We were told we could still enroll--at the cost of 1500 for the year.  UGH!  So we called the county and set up a meeting Cyler's zoned school.  We went.  We saw.  We LEFT!   We were actually considering enrolling him but were discouraged by the guidance counselor.  She felt they wouldn't be able to meet his needs.  

So.....we were back to square one.  We ended up enrolling him in connections academy.  It is free and he can do it at home.  It is in line with the public school curriculum and considered "public school at home".  The good thing is that he can participate in the extra curricular activities so that he is "socialized".  I hate that phrase but I do understand the importance of being around other children.   Soccer, here we come!   (and of course dance class)  

Kindergarten here we COME!!

Cyler will be six years old next month.   This is the age where you "MUST" enroll your child in school or submit an intent to home school here in FL.  We knew we didn't want Cyler in public school here in FL so we decided to pursue homeschooling.  And we decided to wait until he was six to start "formal" education because we simply wanted him to be a little kid a while longer.  We haven't slacked...we just haven't PUSHED.   

He learns everyday and he is quite smart. We hear all the time how smart other parents children are. We are told how they can tie their shoes, count to 1000, and write entire essays by the time they are in Kindergarten. That is wonderful!  Cyler can't tie his shoes yet and can only write his name, but that is ok.  He puts on his canvas slip-ons and goes about his day. Every day is an adventure for him.  He creates, imagines, explores, and understands his environment.  He has a thought process that is deeper and more complicated than many adults I have met.   You can't get my with a "because I said so" with him.  He must understand every detail of something before he is satisfied.  

We have been trying to find the right curriculum for him for 2 years now.  We wanted something above and beyond what he would learn in public school beyond the "common core".  A curriculum that well rounded, secular, and strong.  We researched many and really liked Calvert.  However, it was way to expensive.  We have tried to piece it together but we aren't confident that it would be good enough.  The public school was of course trying to get us to sign up with their k12.   If we signed up for that they would still get the tax money for Cyler being enrolled and we would have to do all the work with THEIR curriculum.   UGH!

However, just found out by searching (no one wanted to tell us) that the public school system will pay for Cyler to use Calvert at home as long as we follow their calendar year, etc.  Basically, the school district will still get the tax money because they can claim that he is enrolled in school but we get the Calvert curriculum for FREE!   For us this is a BIG WIN!   It's about the quality of the education.   

May resume regular activity!

Cyler had been on restrictions since his surgery Dec 30th.  No pushing, pulling, lifting, jumping, etc.   Cyler followed those rules for about a week.  Finally, on Feb. 12 he got his clearance.  We had a difficult time explaining to his therapists that he was limited in what he could do.  One of his occupational therapists flat out ignored the fact that he had any restrictions and that was only 2 weeks post op. I told her right before their session and she proceeded to put him on the floor (on a sheet) and then pulled him around the gym.  I had to stop her.  I couldn't watch him straining to stay upright.  I reminded again that he can't do any activities that put stress on is abdomen until he is cleared.  I added that he just had surgery.  She asked me where??  I almost fell over.  After another explanation of what was done (surgery) and where (abdomen), she agreed to do lighter activities.  UGH!

On the positive side we have seen a big improvement in his balance and coordination now that he can utilize those abs.  He has always had them, they just weren't connected to each other.  He was able to balance on one foot almost right away. Its been a transition for us as well.   For 5 years we have been trying to protect his belly while at the same time allowing him to grow and explore.  There are times we have probably been a little more protective than necessary.  :)  Well after all those years protecting that belly he has decided to make up for lost time.  He is jumping off of things.  Last week he attempted a jump from his toy bin to his bed and missed.  ---says "it was like motocross".   Yes, we freaked a little.  Fortunately, he wasn't hurt but it hasn't stopped him either.

Here is a picture of his belly 1.5 months post op.

He is very proud of his new belly.  He loves to show it off.  He is scheduled to have an inguinal hernia repair the beginning of March.  The surgeon said it should be a day procedure. I don't like the idea of another surgery but it is necessary.

The Belt

We had a belt made for Cyler that would offer a little compression, a little protection, and a lot of confidence.  He has worn one every day since he began walking.  Originally, we used a product called walking wings---it was a belt that fit around the chest and had handles.   He used that while he learned to walk.

Once he was walking more we took off the handles and moved the belt down to cover his O....and he was off.   He outgrew that and we had to think of something so we took the belt to a seamstress and asked if she could make something based on that basic design.

Above is what we ended up with.  We had her make several of them.   Occasionally, people would ask what the belt was for.  I would usually tell them it was his super hero belt.  So, we decided to put a super hero patch on it!

When we got home from the hospital the other day Cyler asked for his belt.  We told him that he didn't need it anymore.  He insisted that he did because he is able to run with it on.  So... we put it on him as lightly as we could.  Within a few minutes he wanted it off.  He hasn't mentioned it since.

New Year New Belly!!

Cyler had is muscle closure surgery Dec 30th.   The surgeons were able to close completely without the use of mesh.  It did require that he be on the vent for one day after the surgery.  I almost lost it.   They made sure that I was absolutely aware that this was only so that his body could rest and not because he "needed' the vent. It was very hard to see but we did it and he rested very comfortably.  

They took him off the vent the following day and he did amazing.   He didn't like the fact that he still had the other tubes--NG, IV, etc.  But he understood, as much as a 5 year old can, that they would be coming out when it was time.  We ended up staying at All Children's Hospital for 5 days.

He got the nurses a little concerned when his heart rate would drop into the forties.  I used to panic too!   Cyler has had multiple Echos, EKGs, and Holter studies.  However, these nurses and doctor's were new to Cyler and how his body works (and he just had major surger).   They called in the cardiologist to check on Cyler.  I explained his history and that he had been followed by Dr. Riddle.   The cardiologist informed me that Dr. Riddle was in fact working at All Children's.  I was completely taken aback....OUR Dr. Riddle!!!   Cyler had to wear a Holter monitor overnight so that they could see his rhythm.

The next morning the cardiologist told us that it was sinus bradycardia and not to worry unless he has symptoms.  This confirmed Dr. Riddles findings but it's never a bad idea to check.   We got the information so that we can continue care under Dr. Riddle.

Overall our experience was amazing.  They took great care of my little man.  He took care of them too!   He discovered the call light while in there and that if he pushed it he would get "things".  He asked for chocolate milk, legos, and at 5am one morning he rang for pain meds.   He handled all of this better than I could have imagined.  I am so proud of my little super hero!!

Here is his belly at 7 months old:

Here is his belly about a year ago---and how it looked right before surgery minus the Mic-Key tube.

Here is his new belly (1 week post op)....I will post an updated pic in a new post once healed better.