November 17, 2016
Nov. 16, 2016
Good afternoon! Headed to Boston Children's for the day. Urology and Cardiology. ...and a stop to ICU to visit!
Conor has been getting back into the groove with school. He has an excellent aide, Colleen and an equally incredible tutor/assistive tech, Nick! WSHS couldn't be any more supportive! Two hours a day and tutoring is what he can handle now and is going well.
I mentioned exciting news from Philly, but, didn't want to "announce " until we had an official date. ~
SO, January 6th, Conor WILL BE getting nerve transfer surgery! He was an excellent candidate and was graciously accepted!
It will take about a year to see the full effects, as nerves grow about a millimeter a day. He will regain tricep function, open and close of hand, and a STRONG possibility and promising outlook for finger movement!
This doesn't stop him from returning to GA for intensive day therapy, it just pushes us back about a month. It also doesn't exclude tendon transfer either. That will come in the summer. God willing, by his 18th birthday, (January 2018) he'll be just about full functioning upper extremity and in a manual chair!
The excavation is beginning TOMORROW on the house. Having him in our own home and us all together for Christmas is my biggest prayer!
As always, thank you for your continued support, prayers and monetary donations! We are in need and are eternally grateful!!!
Love, the Mama
October 25, 2016
He's baaaaaaack!!!! Please let's all welcome home Conor and his family!!!
And here's the story as covered by local news:
www.westernmassnews.com
October 15, 2016
Thurs. Oct. 13, 2016
~~
So, yesterday Conor had his catheter surgery. It went well. However, during pre-op, a heart murmur was found. Later in the afternoon it was confirmed. Through the night he didn't get much sleep. He was itchy from the anesthesia wearing off and was having extreme back pain. The back pain has been a constant issue lately. (We are prayerful that this is due to the loaner chair that he's in until his custom chair is ready.)
This morning he was having some breathing issues, low blood pressure and his pulse-ox rates weren't good. So, he had a chest x-ray, followed by an echocardiogram in the afternoon. (He was able to get out of calculus.)
Overall, he's just fatigued and a bit discouraged, as each new day for the past few weeks brings a new health challenge.
We should have results tomorrow.
Please pray for for him to have a peaceful nights sleep and the heart 'issues' to be manageable. Some of you may, or may not know, but, 4 years ago, Conor underwent heart surgery at Boston Children's. That said, this is hopefully just a blip that was irritated by his spinal cord injury.
Also, prayers the house will be ready as soon as possible. Its finally moving along, but, we still need support to get it done for him to come home. It's more extensive and expensive than we had thought.
After the last three months, and the MANY that lie ahead, we just want to have our home be a place that is still "home" for him.
Thank you all for your constant support and love. It means everything!
~ the mama
October 13, 2016
Wednesday, October 12, 2016
Prayers for Conor ya'll. He's going in for surgery on about an hour. It's a routine, common procedure for a specific catheter; but, anesthesia is always a risk... extra with an SCI.
Will keep you posted.
Thanks ~ the mama
September 9, 2016
Hi ya'll... Conor's mom reporting: September is Spinal Cord Injury Awareness month, to that end, I'd like to be real for a minute~
There is not a word to describe the range of emotion that Conor goes through daily. There is nothing in life that could prepare a family for this. On this Facebook page, we are always posting encouraging moments and victories.
Truth be told, everyday is a minute by minute, hour by hour, task. There are 10 things that go wrong, for every one thing that goes right. Those moments of one are worth SO VERY MUCH and that's why we post them. However, the ten in between can be heart wrenching.
Conor is now a quadriplegic. That is a fact. A hard fact.
There are approximately 12,000 SCI (Spinal Cord Injury) annually in the U.S. It is a RARE injury to suffer from and there is VERY LITTLE known about them. No 2 patients are the same, even with the same injury. Every human being has a different pathway of nerves. This makes it quite difficult to provide definitive answers or outcomes.
To date, majority of research has been on prevention and the possibility of nerve stimulating. Just now, strides are being made to explore other areas, such as; stem cell transplants to stimulate new nerve growth, virtual reality to rewire the brain and epidural (of sorts) placement to control movement to walk.
I will NEVER say that my son won't walk one day. It is unlikely, but our God is bigger than I, and if he wants Conor to walk again, he will...but, today - today he is in a chair. Today he can do almost nothing on his own. Today, he is lying in bed, freezing, with a temp over 102°, due to ANOTHER infection. It is his 5th infection since his accident, and it certainly will NOT be his last.
BUT, ya know what? Ya know what he just asked me to do? Read. Read him his Bible.
Ya know what else? I look around the room and I see a "Patty's Porch" sign on his door {every time a patient "graduates" from the 4th floor, they hand down honors.}Patty's porch was given to him. It is an honor he was awarded because he's so nice and gather people together. (As the original Patty did outside her room daily.) I also see he was awarded the "Golden Collar". This is for his determination. Today, he was given the "Hard Helmet", for being the hardest worker in therapy.
My son has not lost himself. He has lost a lot, but; not his faith, not his soul, not his heart. He is an amazing man of God and an inspiration to many, myself included.
I urge you to learn more about SCI and continue to pray for my boy and our family.
Thank you!
September 6, 2016
September 3, 2016
Conor Says: "Hustle, Hit, Never Quit!"
UPDATE:
✔️ TRACH OUT!!!
✔️ Neck Brace Off
✔️ GI Peg out
✔️ Off The Ventilator
✔️ Off Feeding Tube
