Gavin's cataract surgery is still on schedule for next week! Please keep him in your prayers that he is healthy enough to have the surgery!!! These past 2 months have been rough...we are ready for the surgery to happen so he can heal and see better (so does he)! It sucks that his surgery is a few days before Christmas :( But, we are kinda lucky that the kids are still young enough to not realize what day Christmas actually is ;) That is why we are going to celebrate this weekend (also, the surgery is going to make him temporarily blind for about 2 + weeks)!
This Firday (the 17th) will be our Christmas Eve and we will leave cookies and milk out for Santa along with a note that Gavin will write for him. We will also leave an apple out for his raindeer (gotta take care of santas raindeer...). Saturday morning the boys will wake up to filled stockings, lots of presents under the Christms Tree, cookie crumbs on Santa's plate along with an empty class of milk and a missing apple. Hopefully Santa will read Gavin's letter and write him back :) The boys will also have a big surprise wating for them in their playroom.....no, I can't tell you what it is yet because it's a surprise :) Santa might even track in some snow from the North Pole.
That evening the whole family will be coming over and we will have a fun Christmas dinner and exchange gifts. The only one missing will be my brother Billy :( He will still be in Hawaii with the Army :(
I really want to make this Christmas special for Gavin! Seeing that he is only 5 and this is probably going to be the first Christmas that he will remember!
So, right now I have to leave to pick him up from school, but, please remember to keep him in your thoughts and prayers during this time...
Thank you and may you all have a wonderful holiday season and amazing New Year!!!
Wednesday, December 15, 2010
Tuesday, November 30, 2010
Well, tomorrow we head back to Shands hospital for Gavin's gazillionth infusion. I am kind numb to it all these days. I am trying so hard to stay possitive on the outside for Gavin...but...on the inside I am numb. I hate seeing him so sick all of the time. He is exausted!!! I am exausted!!! We are all exausted!!!
So, needless to say...5 am will be here before we know it so I am going to try to sleep now. I will update everyone tomorrow when we get home :)
Wednesday, November 17, 2010
We worked so hard to make sure that we crossed all of our t's and dotted all of our i's but Gavin's cataract surgery was canceled again :( I am taking this as a sign...a good sign. I am going to be positive about the Dr's decision to not operate at this time and wait another month. Her reason was because his eyes are too inflamed and if she operates it could cause more damage then good! And we don't want that!
But, the drive down was still a successfully one. He got steroid injections in both eyes (ouch) and she took some specimen samples from his left eye for a study (the same study they did on his right eye a few months ago). He was in A LOT of pain when he woke up and lost his voice from screaming so much :( He kept yelling that his eyes hurt and he can't see...it was a little scary. But, we got him some ice packs for his eyes and some Tylenol and he fell right back asleep for about 45 min. He woke up feeling much better and watched some of Toy Story 3~drank a lot of water. Then it was back in the car for our 5 hr drive home (actually, we made it in 4hrs & 30 min....woohoo).
So, the plan now is to wait and see what his results will be from the study and that will determine his treatment plan. Then, if all goes well he will have his surgery on Dec. 22ND. Please keep him in your prayers. He NEEDS to have this surgery done so he can see better! The cataract is only getting worse and fast!
Also, thank you for the kind calls and facebook prayers and comments! They mean so much to us!
Wednesday, October 27, 2010
Today was Gavin's scheduled infusion day. He was supposed to get his remicade, solu-medrol & IVIG but just got his IVIG since he has a sinus infection and bronchitis. I just pray that his joints and eyes don't flare because of the missed infusions!!! He will be getting them next Wed. though :)
His doctor put him on 2 other/different antibiotics and Advair... We will start them tomorrow and hope and pray that it clears everything up! Remember, he can't have his cataract surgery unless he is "100%"!!!
They also gave Gavin an Albuterol breathing treatment while we were there and boy did it make him hyper!!!! He was running back and forth, in the infusions room, and jumping belly first on a rolling chair...lol...he was in rare form. He also blew a vein...but, of course it didn't hurt him and we didn't know until his IV came out.
We got to see out friends in the infusion room today...Heidi, Jake & Hannah...Jake was getting an infusion as well. They also bought a few of Gavin's bracelets...Thank You Guys <3>
Hope everyone has a great rest of the week and safe Halloween weekend!
Tuesday, October 26, 2010
Tonight was the rheumatoid arthritis educational program. It was very informational (what I got to see of it). Gavin was having a hard time because it was very cold in there and the cold air makes him have, asthma like, cough attacks. But, I got to bring some info home and it is ALL about Actemra!!! YAY!!! This is the drug that Gavin will be starting in Dec/Jan. It will take place of his Remicade infusions. I am so glad that I went...even though I couldn't stay.
Gavin is feeling much better! I always have my car a/c set to 80 or higher (yes, even when it's hot outside) because I freeze if its any lower (my husband hates it). So, once he warmed up in the car he was feeling better.
I am so ready for him to feel better! I hate it when he has these attacks! He hates it even more. They were so bad tonight that he was about to be sick and couldn't catch his breath. I am glad we are going to get his infusion tomorrow! Although....he was supposed to get his solu-medrol, remicade & IVIG, but now can only get his IVIG because of the sinus infection & bronchitis. I am worried that he will start flaring because he is going to miss his remicade & solu....but, if this is what is best for him then it's what we will do.
Gavin made me SO PROUD today! As we were pulling up to his school...he told me that he didn't want me to walk him to class anymore because he knows the way now and can do it all by himself! I was speechless at first, I thought he liked me walking him to class, then had a huge smile on my face! He is growing up so fast! Anyways, I asked him if I could walk him to the front of the school and watch him walk to class...he said yes! But, he really wanted me to just drop him off and leave :( So, his little brothers and I walked him to the front and watched him walk to class...ALL BY HIMSELF!!!!! I was SO PROUD! I know it may sound cheesy to some people but he is my oldest so :p He was so proud of himself also! I talked to him about it when I picked him up today and he was grinning from ear to ear! He said he wants to do it everyday! ......Honestly, I think his teacher put him up to it. I don't think she like me coming in the classroom every time ;)
Hope everyone has a great day tomorrow. It's off to Shand's, bight and early, for us!
Monday, October 25, 2010
Gavin woke up this morning in his normal great mood. He was so happy it was Monday because he could go to school (he missed all last week because he was supposed to have cataract surgery in Miami, but the cancelled it as they were prepping him in the OR >:(...). Anyways, we dropped his brother off at preschool then went to his school. As his baby brother and I were walking him to class he tells me, "Mommy, I don't feel good." This was odd because he was feeling great an hour ago and he NEVER complains about not feeling well...even when he is flaring! I asked him what was wrong and he said, "My head hurts...it's too big." I asked him if he still wanted to go to school and he said yes. He told me that he will tell his teacher when he doesn't feel good and wants to go home. I told his teacher that his head is bothering him and he has a sinus infection and bronchitis and if he really feels bad to just call me and I will pick him up.
My poor baby! He did get his Methotrexate shot last night, but he has never had any side effects from it before. He has been on it for over 3 years! I hope he starts feeling better :(
I have a call in with his pediatrician about the results from his sinus and chest x-ray's. I hope she calls me TODAY to figure out a game plan to getting my little man better. In the meantime, I am going to fax a copy of the results to Gavin's rheumatologist and eye Dr. Hopefully they can figure something out together so we can get Gavin's cataract surgery done next month! Fingers crossed :)
Oh, by the way.....
Arthritis! You suck!
Back in 2007 the Arthritis Foundation contacted us and asked us if they could publish Gavin's story about being diagnosed with Juvenile Arthritis. Of course we said yes! The book came out on my birthday in 2008! This is the essay that I wrote for the book.
The title of the book is called
"Raising a child with Arthritis"
You can buy it at amazon.com
Sunday, October 24, 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!
Friday, October 22, 2010
We got the results from Gavin's chest & sinus x-ray's back today! He has a sinus infection & bronchitis :( So now we have to work on what kind of meds he will need to clear it all up so he can be cleared for his cataract surgery on November 17th! Thanks everyone for the prayers and kind words! I guess it was a blessing in disguise that they cancelled his surgery!