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!
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.
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.
Hi I just updated on a new post about Sam And we did find a new doctor for the little kids! Thank you!
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