Brady celebrated his 11th birthday at the beginning of the month and we are so thankful to still have him with us and him doing so well. Yes, he was diagnosed with arthritis in October, but with the help us his weekly shots he is moving around significantly better. After a recent rheumatology appointment Brady was put on an additional med (copay of $1500) that is also a weekly shot since his arthritis had not completely gone away. He was still having significant morning stiffness and new joint pains popping up. So every week I have to find fat on his arm (which does not exist) and attempt to give him shots that are pain free. He is a good sport and doesn't complain.
Brady saw cardiology in December and had a thorough evaluation done of his heart and his aortic repair is holding up well. His heart pressures were elevated a little more than they had been and there was a discussion to possibly put him in the cath lab to have a stent placed in his pulmonary valve, but there was a worry that when the stent was popped open it would cut off the main artery supplying blood to his heart. Dr. Day determined that Brady was doing well so we were not going to tinker and possibly cause bigger problems. His pacemaker is still functioning well and the battery has another 4 years before it needs to be replaced. The last two uploads from the data on his pacemaker has revealed unusual events. The first one occurred in October and we were given the exact day and time of the event. I chuckled because it occurred after he had done a 90 foot rappel into Goblins Lair and was jumping on Goblins. We were sure we would hear of another event occurring on December 24th as Brady rode on all the scary rides at Knots Berry Farm, but rather it occurred on some random Saturday in December. The events are enough to catch their attention, but nothing that needs to be done.
The arthritis meds are working to make his pain better, but they weaken his immune system so this winter has been challenging. He has had several sicknesses each lasting quite some time. He caught a virus in March that laid him flat for several weeks. He was more tired than I had ever seen him and we were concerned that something was going on with his heart. After blood tests and a few other tests we were told his heart function looks great. The tiredness must be coming from his arthritis. Such a juggling act.
He continues to have his Cyclical Vomiting episodes every 11 weeks and they last for nearly a week. Brady has some medicines he takes during these episodes that make them much more manageable, but he is always grateful when another round is finished. His symptoms are vomiting, dizziness, sensitivity to light and tiredness.
I feel Heavenly Father is incredibly merciful with Brady. He may be sick a lot and has a lot of days where he doesn't feel well, but he always is well when we have big events planned. We went to California over Christmas and visited Disneyland, Knott's Berry Farm, the beach and he even hiked Angels Landing in Zion's on the return trip. We have been rock climbing and rappelling several times and for Spring Break we visited Goblin Valley, Ding and Dang canyon and Arches. He was sick before these events and following, but was well when it counted and was able to fully enjoy the trips themselves.
Here are a few photos from the last 6-7 months.
Halloween Costume - how appropriate is the tin man!
Playing on the beach in CA
Angel's Landing.
90 foot rappel into Goblin's Lair
Advantages of being skinny you can fit in places others can't.
A little fun in Toon Town in Disneyland.
Could not keep this boy off the scary rides at Knott's Berry Farm.
He even rode the Xcelerator.
Hot tub in the backyard of the house we stayed at in CA.
Plenty of this the last few months. Sick in bed.
For your enjoyment this is an X-ray of Brady's chest.
All those marks that look like pencil marks are his sternal wires.
No comments:
Post a Comment