Tony is doing great, out of school for holidays!!
Enjoy your family and friends, Be safe!
God Bless,
Robyn

A true Happy Thanksgiving!

Be safe, enjoy your family and friends!

Tony is doing fantastic, and looking forward to driving soon!

A tony update

HI,

It has been a while; we want to tell you Tony is doing amazingly well!
He is attending High School FULL time for his junior year; this is a first in 6 years! Tony is still working on completing two courses from last year, but is about finished, and his grades are amazing this year! Time for SAT studies and looking into colleges!

Tony has achieved our 6 month mark in the transplant world with little hiccups. We returned to Pittsburgh, for his check-up, and all is well, we do not have to return for 6 months, Yahoo!! Hoping that they will plan to pull Tony’s tummy muscles this summer!

Tony still manages to take over 50 pills a day, plus his insulin many times a day (though his sugars are doing great!), breathing treatments, and vest therapy for daily maintenance of his CF.
Speaking of, his lung function test last month we went to Cf clinic and his PFTs are in the upper 80%, just amazing. I don’t think anyone expected them to get that healthy. I just cried. Hoping they continue to become stronger.
I look at Tony many times throughout the day, in awe of his health and energy level. Tony.

I just wanted to take the time to thank his Donor family for their selfless gift, COTAs amazing staff, organization, and dedication to help families, Mary Ann, her family, friends, our family, and friends, and well, everyone who has supported our journey through Tony’s Transplant, and his splenecotomy. I always feel that I leave someone, or something out when I do write. I just want to shout from a rooftop, and I don’t know when I will ever not be able to boast how well Tony is doing!!

We could not have felt more love and support! THANK YOU, those two words have the greatest meaning.

I have attached a small picture of Tony in his cousins wedding as a groomsman, this past month. He looked so handsome escorting the jr. bridesmaid. It was a beautiful wedding.

Tony also had the opportunity to golf in they Grygiels memorial golf tournament in honor of Laura their daughter, They are an amazing family who chose another COTA family to help this year in their journey. What an honor it was for Tony and his dad to be able to attend.

Again, thank you all

Love and Hugs,
Robyn

Thought I would pop in, and say hello.

Tony has done well through the summer, little hiccups but is feeling so much better!!

I know he is anxious about starting school, and seeing his school friends. THIS MONDAY ( can you see mom doing a happy dance!)
( he loves to text too, HI BILLY R!!!

He hung out with Mr. Bill yesterday, went to lunch, played chess, saw Drews baby girl ( mr. bills son)... enjoyed his day with him. Mr. Bill has been feeling a bit more tired as of late.

Tony came home, ate a bit of dinner. His cousin Kevin came by, took him to Frankies, played games, rode go carts etc. Had a great afternoon.

This is Tonys junior year, and with it comes all the expectations of success, SATs, college thoughts ( his first thought is USC of course).

I have more pics, and more news to share. Boy what a lifetime he has lived in the last 6 months!

Take care,
Hugs, Robyn and Tony

Tony and Stef in the pool

YEAH! Tony jumped into the pool for the first time of the summer, and his return from Pittsburgh.
Tony, and Stef horsing around in the grandparents pool. Pretty Kool!!

As you can see he is doing great.
We went to the allergist on Monday. Not a pretty picture. He is allergic to many, many things Now to figure out how he can eat, gain weight,stay healthy and avoid the culprits of his gastritis issues! OH JOY!

You never would know how challenging it is for Tony to eat, between what is good for high blood pressure, isn't benifical for the CF. What is good for the CF isn't good for his diabities, now his allergies!!

Can we do it, YES WE CAN! Many do it every day, so they tell me, so if the docs say its possible it must be!!

We were in CF clinic today. His PFTs were a bit better. He is getting stronger. I was sadden by a bit of news from Dr. Isabel...well not sad, but yes, sad. Ok..on with it.

Tony is doing well as you can see, we hope you stop and say hello to him anytime!
Hugs, Robyn and Tony

Mr. Bill Johnstone & Tony

Mr. Bill took Tony out for lunch Sunday. They both look fantastic! They sure do enjoy each others company!

Tony at the Incline in Pittsburgh

Tony walking out to the deck to the overlook

Hello,

We have just returned from Pittsburgh. Tony had to return to have his T-Tube checked, and removed. All went perfectly well! Tony was a little apprehensive about the pulling, but it was just like a little PICC line. Slipped right out!!

Grandma Pasquino and Stephanie went with us. It was great fun...though we wish we would have gone to to the incline during the evening! Other than that we ate well, and just relaxed!
It was great fun to see Tony in the back seat watching movies and playing games with his sister on this road trip
For over 5 years he has had to ride up front because now we know, the huge spleen caused great discomfort. You can imagine if ever pregnant right?
It was another mommy moment, and I have you all to thank for this great health improvement..for without you we wouldn't have been able to go to Pittsburgh.

School will be starting the 17th of August. I cannot WAIT! HA! Tony will attempt to go full time. I have high hopes! He is feeling better each day.

We did have quite a drama going on, right before we left.
Tony was actually admitted into the hospital at MUSC with severe stomach pains on thursday. It seemed whatever we did, didn't help.
He wouldn't eat, and became a bit dehydrated I think.
THANKFULLY, Dr. Palai his liver doctor, and the greatest people in MUSC fit Tony in to do an upper endoscope friday. They discharged him on friday. We left for Pitts on saturday!

The good news was there were no signs of varices, and Dr. P. found the culprit of his stomach pain.
Severe Gastritis, with this found, he gave us a medication to coat his tummy, and some pain meds.
Within 24 hours, tony was feeling almost human again!
Dr. P. also took biopsies. One returned and said he has some sort of allergy to either a food, or medication.
OH JOY!
SO...to add to his barrage of doctors we now add an allergist, which tony has an appointment with on Monday. He could be allergic to an additive in the drug itself and a fix is an alternate drug. It could be a food..
Hoping for a answer we can fix!

BOY if we can get both ends to work together he would be 100% HA!

He is so looking forward to going swimming! He has one little area on his incision that must heal and it is covered. Hoping by this weekend it will be ready!!!

Hugs, Robyn & Tony

Tony & Stephanie waiting........

As you can see, Tony and Stef are trying to keep from being too bored at the hospital! Tony is waiting to have his ultra sound done of his kidneys.

He is still on the road to recovery! Tony has many puzzle pieces.
Cystic Fibrosis, high blood pressure, diabetes, a huge spleen removed and lest we forget the wonderful gift of a new liver!!

As always Tony never complains. He knows he will be the best soon. Just a little patience needed.

He is still in physical therapy twice a week, and it is working, YEAH! His upper back pain has diminished a bit, though he can sure tell when he isn't going.

We just spent 8 hours in the hospital E.R., ugh. Thankfully they didn't find anything wrong through all the tests they ran, but we haven't been able to fix the pain issue either. Using a process of elimination Removing foods,excercise, medications etc.

Dr.Isabel, and Dr. P both came by the E.R.. They are so awesome. We have been seeing them many many years! The ER folks at MUSC of course ROCK too!

Cheryl in Pitts.,said the more he moves of course is the best thing, but it is so difficult when your belly hurts! A vicious cycle... It may be that his stomach muscles are still not pulled over, and his body hasn't gotten strong enough, maybe his body just needs a little more rehab!!

We are also working hard trying to put weight on him too!

Tony is working on his school work daily. Thank goodness for Ms. Westbrook!!!!

We are getting ready to head back to Pittsburgh this saturday, Grandma,& Stef are going along.. hopefully for his T-tube removal.
Praying that his test for his bile duct will be great, and they will remove his tube and he can come home and go swimming!
I think this will definatly aid his recovery and strengthen his body more!

Will let you all know the outcome!

hugs, Robyn and Tony

p.s. Thanks Mr. Bill J. for taking tony to lunch and target..thought you were being sneaky haha..you spoil him so!!love ya...