Our Boys

Our Boys
Gavin with his brothers

Sunday, October 24, 2010

The Beginning....2005-now (2010)

Gavin was born on April 7, 2005! He was 10 lbs & 2.1 oz! It was the most perfect day in our lives! Everyone was there...my parents, grandparents, brother, sister, uncle & Tyler's parents! He had to be under the Billi-lights the last 2 days because he was jaundice, but that is pretty common. He was a great eater but soon developed an intolerance to dairy...that was very hard! He would be sick for hours after anything with dairy in it touched his tongue! But, we learned how to work around it.
The week before Gavin turned 1 he got a nasty virus...Rota virus! He was so sick and couldn't keep anything down so they admitted him to the hospital for 4 days. Once he was able to keep fluids in and not get sick we were discharged.
January 9, 2007...the day that changed our lives forever! I was 8 months pregnant with our 2ND son, Gavin had a cold (nothing but a runny nose and a cough) & when he got up that morning we did the normal routine. I got him out of his crib and put him in bed with me. Well, after about 15 min of being in bed with me he was usually down and running around. This morning he was different. We layed in bed for 3 hours!!!! I couldn't believe it! My mom stopped by and I told her I thought his cold was getting worse because he was still laying in bed. We got him up and when he went to stand he kept his right knee bent. Right away we noticed that his knee was swollen so I called his pedi right away. We took him to his doctor and they sent us to a pedi orthopedic surgeon. They took x-ray's and said that they "think" he broke his growth plate so he needed to be in a cast for 4 weeks! I started crying! I couldn't believe it! So, he gets the cast put on and he is put on an anti-inflammatory for the pain.
The next 3 weeks he was great! He was running, jumping, climbing...he never let his cast slow him down! The 4th week was a different story! The mornings were very hard for him. He couldn't walk and the anti-inflammatory weren't working anymore.
The morning of his appointment he was in so much pain! He wouldn't eat, smile or laugh! He also had a swollen left big toe...I thought he broke it with his cast! The morning of his appointment they took more x-ray's and also took some of his swollen toe. Then the tech took his cast off.....When his cast came of and we looked down at his knee we couldn't believe our eyes! Our little 22 month old had a knee the size of a large grapefruit! I asked the tech why his knee was so big and he said that it was normal! I told him to look at his knee because this is NOT normal! The tech then looked and was speechless. He then said he will be right back! We were so scared...what was happening to our baby?
The tech came back with the doctor and he look at Gavin's knee then at his x-ray's and repeated this, what felt like a million times! Then he said the words that I had never heard before, "I believe your son has Juvenile Rheumatoid Arthritis!" I just broke down crying! He then told us he needed to drain his knee to relieve some of the pressure. He called in 3 other employees and my husband, the tech and the other 3 employees held our son down while the doctor drained fluid from Gavin's knee! I sat in the corner and cried. I couldn't believe what was happening. It was awful!
When we finally left the office, we pulled into a Burger King parking lot and just sat there for about 2 hours! We just kept replaying was had just happened and wondered what this meant for our baby. I think we were in shock!
We got hooked up with a pedi rheumatologist and Gavin was put on Naproxen. Things were not improving and in a month his left wrist was swollen so on April 3, 2007 Gavin was put under and had cortisone injections in his right knee and left wrist. He was also started on weekly Methotrexate injections that I had to give him!
Because Gavin hadn't walked in months, his legs were atrophied and he had to start physical therapy. That, with the meds, helped him to walk again! He had a pretty big limp for almost a year after that but he didn't let it stop him.
Also, in that first year, Gavin developed Uveitis. Uveitis is inflammation of the Iris (arthritis in the eyes)! This is very painful and Gavin's was very aggressive! They changed his meds to Enbrel injections and steroid eye drops. When this didn't work they started him on Humeria injections. When that didn't work the had to do eye surgery! First they did a surgery where they scraped away at the scaring of his pupil from the inflammation. Second surgery they had to remove a cataract from his right eye. Third surgery they had to remove scaring around the pupil from his other eye. Then, he was put on monthly Remicade infusions.
January 2008...Gavin's arthritis and Uveitis were winning the fight! Gavin was shutting down! He wouldn't eat, drink, talk, smile, walk or crawl! We couldn't pick him up without him crying in pain! He was so depressed and in so much pain it was killing us! We tried for days to get in touch with his rheumatologist with no luck. finally his pediatrician admitted him to the hospital because she didn't know what else to do. There Gavin was put on Morphine and put through so many tests! It was so hard on all of us. But, slowly he started coming back to us and eating and drinking on his own!
October 2010...Since then we have found a new pediatric rheumatologist and he has been a different kid! He is on a lot more medications but it is working! He is currently taking...naproxen 2x a day, prednisolone 1 x a day, zantac 2 x a day, calcium carbonate 1 x a day, D3 1 x a day, methotrexate injection 1 x a week, leucovorin 1 x a week, remicade infusion every 4 weeks, solu-medrol infusion every 4 weeks, IVIG infusion every 4 weeks, rituxan infusion every 3 months, multi-vit, acidopholis, fish oil & cherry pills daily.
Gavin has to have cataract surgery on his left eye now but other then that his eyes have been doing great! The swelling has been under control, thanks to his doctor @ Bascom Palmer Eye Institute!
Sorry this is so long, but I have a hard time making long stories short. I will keep posting on our blog as we continue our journey with JA.
Did you know that there are 300,000 children clinically diagnosed with JA?
One of our goals is to spread awareness about this disease! Please help us with this goal!

1 comment:

  1. It's not too long. It's an important story! These are the things that people need to know. Sharing the story is almost as important as the story itself. Welcome to the addictive world of blogging! :)