A Sam Update

 Thanks for all the comments, the blog layout has changed and for some reason I just got the notification from weeks ago.  I think that is fixed thankfully!

So a Sam update.... March 9th Sam had a MRI under anesthesia   We were allowed to walk him in and Jon helped him go to sleep.  Evidently as soon as we walked out there was an emergency!  Sam has always (more than 50 times) been put under by being masked and then had an IV put in.   They usually do this with younger kids but since Sam is like a toddler they've kept doing it.  Well..... this time he had a reaction, his throat closed up and he quit breathing!!  The doctor had to bag him and they had a very hard time intubating him because of several reasons.   We had NO IDEA this drama was going on....  

At the SAME time or very close to it our oldest son Steve called to check on us.  As we were speaking, I heard him say "oh my God!"  Well he was driving to lunch and was beside a semi hauling roofing materials.  The lumber for the roof (the peak was already put together) was strapped down and a strap broke and flew across his windshield.  Then the prepared roof began falling off the truck right behind him!  By the grace of God it missed his car.  He was shook up.  

After we called him back to tell him what happened with Sam (we didn't know at the time he called us) he told me to check on Shad and tell him to stay in bed for the rest of the day!!! 

Sam had no issue and was released that day after the anestheslogist warned us to never ever let him be put to sleep outside of a hospital and never by mask again.  She was so shook up.  She went back and reviewed his surgery that took place last year there at St Joe's and she was relieved to find she did exactly the same protocol  as her colleague did.  We went home grateful yet again for God sparing our Sam and our Steve!  

Just the Sunday before Jon preached a sermon about how God hears and answers prayer especially prayers we pray for our family.  He shared some things our family has gone through and how God moved mountains.  While I know every prayer is not answered in the way we want it to be-I know I can trust my Lord!  Boy we lived it out that week!  In situations minutes apart at the most we could have lost two of our children.... I'm so very grateful we did not!  So if our family ever comes to your mind say a prayer for us!  

So after ALL of the tests, the trip to NY and that MRI.....Sam's brain is fine, the blood flow is fine.  There were two small things the MRI suggested.  One was a a mild mucosal thickening of the paranasal sinus with mastoid air cells likely.  That could cause some dizziness.  The other was Partial empty sella which is related to the pituitary gland and could cause something like vertigo.....  And even though Sam is better there are days when he is still "off"  He seems to have issues every single January-April....different issues non related but it's something every year.  He also seems to battle anxiety/depression during that time.  

Recently we also discovered that in chromosome 19 he has all parts of it but it's in "disarray"  It's out of order.  Let's say it should read "ABCDEF"  His reads "HXVBZP"  It might be a new marker for Peter's Anomaly!  Sam has what is called "clinical Peter's"  That means his eyes and everything else has all the characteristics  that Peter's Anomaly has but he doesn't have the chromosomal markers.  He is in a study with the University of Wisconsin and this might be a brand new marker for Peter's.  there are a few others who have this and 4 of them also have depression/anxiety occasionally.  And the funny thing is they all have it in the January-April window if I remember correctly!  Of course if we lived up north that could explain it but we live in sunny Florida so they found it interesting.   He also has a deletion in chromosome 4.  

In February Sam turned 17 years old...what a journey it's been for us!  He's had so many things happen to him but he's still here!

His new toys "communicate" with each other...it's a little freaky LOL But as long as they light up and play music he is happy.  

Sam is finished with puberty and according to bone scans & blood work will not grow any taller.  He has to be shaved weekly and we keep his mustache it's so cute to me.  He loves getting shaved, haircuts, pedicures and manicures (yes he goes with me Sarah would never allow a stranger to touch her!)  He LOVES massages and we also go together for them!  He's about 4'10 it's a little hard to measure him because he stands with his knees bent (something we are dealing with)  He weighs about 100 pounds.  He's perfectly proportioned even though he is not on the growth chart for a 17 year old.   

Sam is a blessing, if he had never been born, I'm pretty sure we would have never adopted children with special needs.  His life has changed so many other's lives.  God spoke to me one day on the way to work when I was not in a good place and told me I'd have a son named Sam and he would change my life.  I had NO EARTHLY idea how true that was going to be!  He changed the whole course of my life and that is not exaggeration!  I love him so much and at the same time I worry so much about him.  Sam has given me plenty to worry about over the years.  But as I reflect back I am so glad I have had the honor of being his mom!

Columbian Restaurant Ybor City and Lettuce Lake Park

 Living in Florida there is so much more to offer than theme parks!  Let me introduce you to a couple of fun cheap places that are amazing!

The Columbian Restaurant has become my favorite restaurant.  I'd always wanted to go there but thought it was too expensive.  But if you go for lunch you can get meals as low as $12   The Columbian Restaurant is located in Ybor City (part of old Tampa) It opened in 1905 and is Florida's oldest restaurant and the world's largest Spanish restaurant with 1,700 seats  There are 15 dining rooms and my goal is to eat in everyone of them.  I've only eaten in three so far!    Their 1905 salad is so good-I crave it.  They have an affordable lunch menu and the food is so good.  You can even ask for a tour of the restaurant it is very informative and you'll get to see the inner working.  With it being in the Ybor area you can take a stroll and look around (you might see a bit more than you bargained on the weekend or nights LOL  But it is very interesting.  You can also catch the FREE trolley and ride around Tampa from Ybor City.  We've not done that yet but plan to soon.  

 Read about it  here

My buddy in crime my college roommate we like to do day trips because of our schedules 

the patio

the patio

The wine cellar I can truthfully say I'd never been in one before

the was the original restaurant 

Lettuce Lake Park is in Tampa near the northeast side.  It's not too far from Busch Gardens but much cheaper....$2 a person but bring cash they don't take cards!  

There's all kinds of playgrounds and places to eat, you can rent a kayak or walk the trails.  One trail is a boardwalk on the river with a tower you can climb to see the sights and it is gorgeous.  

My friend and I last went the weekend before it was closing down for the Covid Quarantine

It was nice to be back in the beautiful Florida early summer LOL  

read about it here

Lettuce Lake Park

Just a baby

My goal this year is to explore more and to go do things more than I've done.  A lot of times when I have our dear respite worker here I feel like I should go and do errands or work around the house doing things I can't do if I'm here by myself with the kids.  But life is short and there is so much to do and see in Florida!  I'm planning on blogging about it maybe it'll encourage you to explore your area or visit some of these wonderful places when you come to Florida!

March Madness

 Three months later.....

We survived Covid!  Once I finished my prescription of HCQ I got Covid the next day!  If I had had 21 days of HCQ I do not think I would have gotten it.  Since I have no underlying health issues, I could not get the BAM treatment Jon and Sarah got....I had to suffer it out.  My only symptoms were my toes and claves hurt so bad.  Beyond any kind of muscle cramps I'd ever had.  I was also very tired.  After about a week of laying around I felt like I could not breath deeply although I had no congestion or cough.  The doctor sent me for an x-ray and I had a tiny amount of pneumonia.  He put me on an antibiotic and within 2 days I felt completely normal.  A couple of weeks ago I had a follow up and my lungs are fine no after effects of covid.   The boys and Selah did not ever get covid.  The only real precautions we took was to keep the windows open even at night to keep the air circulating.  Of course Selah's area is separate and we did not go in there during any of this time.   Both of my older boys have been exposed directly to Covid several times and have never gotten it.  It's a crazy virus almost like it picks and choses its' victims!  

This was Jon's first day out of his bedroom for his birthday  He gets veggie pizza with no cheese

Watching It's a Wonderful Life.... it was a wonderful night

Sarah never had another Covid symptom after she had the BAM treatment

Our Christmas 2020 picture... we just made it out of Jon's quarantine before we started mine... LOL or something like that...it all just kinda blended in together after all that time.  

Well our older boys were in lock down with us.  To be honest we had a wonderful Christmas.  As a family we watched alot of TV, old and new movies and Christmas movies.  It was a great time of bonding together after a crazy year and way too much time apart.  Jon called it our "our Covid Christmas"  But all good things must come to an end.  On January 1 we literally moved Steve into his brand new apartment!  It's a great space and so fun to help him set it up.  I was off quarantine  but the move about wiped me out!  I got like 14,000 steps in and he's on the 2nd floor!  

Literally our only meal out the whole Christmas break!  Our favorite restaurant the Columbian!  

We made it to a friend's wedding 

And church once....

Then the next weekend Shad left for his 2nd semester in college.  We were sad to see him go but happy for him to have the opportunity to have such an experience to go to college in Arizona.  Before he left we got to do a few family things together outside our house!  

In January Sam began to act like he could not see at all.  We were terrified!  We first had an ultrasound done at a local ER because we were afraid that his retina had detached.  It looked ok but we left the next morning for NY.  We drove because we still were not 100% sure about his retina.  It was just Jon, Sam Sarah and me!  Our first trip without the older boys.   Soooo January in Rochester NY..... bitter cold and snow.  It was gorgeous but a bit much for this Florida family.  Sam had an exam under anesthesia with our Dear Dr A.  He said everything was perfect, just a little tiny bit of residue from his eye drops.  Our doctor thought he'd be fine but he still acted strange.  Although Sam is legally blind he sees quite a bit, so this was a big change for him.  Once we got home with no improvement our neurologist sent us to the ER for a CAT scan to rule out a tumor, brain bleed or blood clot.  It was clear and Sam did improve some but he is still not back to normal.  He's very fearful and clingy even in the house.  Next week he is having a sedated MRI and another test to check his blood vessels thoroughly.  If that all checks out our guess is vertigo.  We just don't know what to think.  Right now he's home alot, no horse back riding for him (Sarah gets his sessions so she is happy)  He has been struggling with anxiety also.  There are times particularly this time of year when he seems to struggle with it.  We do not know why since we live in Sunny Florida but it happens every year.  This year it's been compounded with whatever else is going on and it's been rough for him and for us.  

Dr A and Jon

I took these pictures.  Across from Strong Hospital is a very old grave yard.  we have always been fascinated by it and visited it several times.  These pictures that I took in freezing snow are amazing to me.  It was so beautiful

But this is where sissy wanted to be LOl  Neither Sarah or Sam are a fan of snow or cold weather.  They are Florida babies! 

YOu can see the cemetery from our hotel room

Once Sam got home he did get all his toys out of the toy box

Sam turned 17 years old in February...unbelievable

Last week we got a call from the University of Wisconsin where Sam and Sarah are both enrolled in a DNA study.  They found Sam has another chromosome abnormality.  In CH 19 all the pieces are there but they are not in the right order!  There have been a few cases (6 I think) discovered and 4 of them have Peter's Anomaly.  Of those four, all seem to have "seasonal anxiety" meaning it comes and goes.  That astonished me because that seem to fit Sam too!  So far we have been treating it by physical activity and time outside.  We are just not interested in him taking drugs especially as it comes and goes.  

Our pediatrician retired and we are trying to find a new one.  Dr W was a wonderful doctor and friend to our family.  This week we had a disastrous appointment with a new Pediatrician.....it's too long and stressful to recount but we will not be using that practice!  We had been with the same practice for almost 25 years so it's hard to change and put your trust in someone else!!!  My experience with this other doctor left me almost in tears and I don't cry much!  I have an appointment to interview a doctor next week and schedule time with another one too.  This is a huge decision for me. 

Sarah is going to be featured on on of our local tv stations soon.  They've shot the interview and will be playing it soon.  

So that was a quick catch up!  Hope you all are doing well!  Thanks for the messages I've gotten- I mean to post more and now I've finally set up a home office I might just do it!