Gavin's Story! Living With Juvenile Arthritis, Uveitis & Ulcerative Coli...

Surgery cancellation #4

Well, as most of you know...Gavin had his pre-op on Friday the 25th. They tested his eye pressure and his left eye tested at 54! This is way too high! The normal range for eye pressure is 10-20. So, this means that his eye is not well enough for cataract surgery :( This also means we need to worry about Glaucoma. UGH...just what he needs. His eye drops have changed...they added some and stopped some. His oral meds will most likely change...just waiting on his rheumy to decide what to do there. My guess is that she will want us to back off on his steroids. He is on the steroids for his JA (Juvenile Arthritis) and UC (Ulcerative Colitis) but there are always side effects and cataracts and glaucoma are some of those side effects. He is still getting an EUA (Exam Under Anesthesia) on the 4th and she has asked a Glaucoma Specialist to do the exam with her so he can help prevent Gavin's eyes from getting any worse. Don't know when the cataract surgery will be but she has asked a Retina Specialist to assist her with the surgery because of the way it needs to be done. I will keep you updated on how his EUA goes and what his rheumy decides on what to do with his meds. Thank you all for the prayers and kind words! xxooxxoo

.......

I am having a rough night tonight. I don't know why but this just happens sometimes. Gavin has been doing great but yet I sit here crying...thinking about the future. Praying that Gavin will be healed so he can live a healthy and very long life. Hating that my sweet boy has these diseases. But knowing that he is a very strong boy and will keep fighting.

The next month is going to be busy for us. Gavin has his Remicade, Solu-medrole & IVIG infusions on Thrusday (that is the same day as his class picture so thinking about changing his infusion to the day before. He is a BIG part of his class and I don't want him to be missing from the picture). He will also start his first round of antibiotics to prep him for his cataract surgery. Friday is his pre-op appointment for his cataract surgery. April 2nd we are having his 6th birthday party :) April 4th is his surgery date then post-op the next day. April 7th is his actual birthday. The same day he is scheduled for his Actemra & Solu-medrole infusions. Then the following week is another eye appointment to follow up with his surgery. The week after that is another infusion Remicade, Solu-medrole & IVIG. And so on with the infusions like normal. On the 25th of April we are finally meeting with the Nephrologist...then we will find out what they are seeing on his kidney from the ultrasound...I am so nervous about this!

I guess all of this is starting to hit me and reality of his surgery is becoming just that...a reality! Although I am so excited about finally getting this done...I am just as scared. Gavin has been under anesthesia more times then I can remember but it never gets any easier. Signing that paper everytime before his procedures gives me such anxiety. UGH!

So, please keep Gavin in your prayers for a successful surgery and quick recovery! And please pray that he stays healthy enough before, during and after. We will keep you updated on how he is doing.

Thank you all
XXOOXXOO
Julie

Infusion Day

Well, it is now 2:50pm and we have been in the infusion room since 8am. Gavin has been such a good boy...mainly because he has slept most of the time. He was up very late last night.

Todays infusion is Remicade, IVIG & Solumedrol. His Dr came in and examined him and is happy with his joints (no flares...YAY). So, she lowered his oral steroids again (another YAY). She is going to mail all of his medical papers from his eye Dr in Miami to the new one here so she can "study" Gavin's history.

Gavin had to get stuck twice today for his IV :( The problem with him is that when they put it in the bend of his elbow the machine goes off every 10 minuites because he won't keep him arm straight. Today they did it in he wrist and it blew :( so they had to do the underneath of his forearm....it looks so painful but he didn't cry once :)

He was so happy to see that Jake and Hannah were here getting their infusions when he woke up. Hannah let Gavin play with her iPod Touch and now he is addicted...lol...he loved it.

Anyways, it has been a great visit at the Dr's today. Now we are going to try and get this splinter out of his finger.

Thanks for the prayers and love! It's working :)

xxooxxoo

2 days of Dr visits...

Today Gavin had his first appointment with his new eye Dr in Gainesville. He/We likes her a lot. She was very nice, compassionate and understanding about Gavin's medical issues. She is also understanding of our feelings and reservations because of the past issues we have had with other Dr's.

Anyways, Gavin was very good for her and she didn't see any cells in his eyes!!!! This means that his eyes are clear....NO INFLAMMATION!!!!!! This is awesome news! So, we scheduled him for his cataract surgery/EUA!! We are very excited and nervous about this. One thing we made sure was that she would not (under no circumstances) do the surgery if she saw any cells in his eye! She agreed and hopefully she is the Dr...the one...that is meant to do this surgery on Gavin. The surgery is scheduled for 4/4/11. Please keep him in your prayers that everything goes perfectly!!! xxoo

After his appointment we took Gavin to Toys R Us and he picked out a couple toys for being such a good boy at the Dr's.

Right now we are resting in a hotel room. Tyler went back home to take care of the other two boys. Gavin and I are planning on seeing a movie tonight "Gnomeo & Juliet" and go out to dinner. Then we have to get lots of sleep for his big infusion day for tomorrow.

Days like tomorrow I dread. It's going to be a long one...Remicade, IVIG & Solumedrol :( I hate putting all of these meds in his body but I understand that (as of right now) it is the only way. At least we will get to see our friends in the infusion room tomorrow. Gavin is going to be so happy when he sees Jake in the infusion room :) I haven't told him that he will be there yet... ;)

I will update you all tomorrow to let you know what his rheumy says and how his infusion goes :)

Thanks for all of the prayers and kind words :)

xxoo

So Far...So Good

Gavin had his Actemra and Solu infusion yesterday for his Juvenile Arthritis and Uveitis. The day started off great :) We ran into some great JA friends, the Sloan's, when we got to the hospital. Being with friends and family always make infusions a lot easier.

Gavin's rheumatologist is very happy with the way he is improving. He has gained more weight and has almost gained the 10lbs back that he lost last month because of the ulcerative colitis. She lowered his prednisolone again down to 6 ml's. His steroid puffiness is starting to go away and his familiar features are starting to come back. The infusion went well and as expected. He watched two movies and before we knew it...he was done. It was a short one for him.

We go back in two weeks for his remicade, solu and IVIG infusion. This is the long infusion...it takes about 8 hours just for the infusion. But, the Sloan family will be there again so that will make it a little easier :)

Gavin's ulcerative colitis has improved a lot! Being back on the remicade has done the trick for him. He is so much happier and full of energy these days. He has an appointment with his GI doctor in two weeks. I am hoping they will lower the doses of some other meds.

We are meeting with a new eye dr for him next month. Gavin's uveitis has been under control...as far as we can tell. At home his vision has seemed to improve. He doesn't have to get as close to things to see them like he used to. This is a good sign...but, he still needs to have his second cataract surgery and hopefully this new dr will be the dr that we have been praying for.

So, all in all, February is off to a great start for Gavin and I hope that he continues to keep improving everyday.

Thank you to everyone who has kept him in your prayers and thoughts. And thank you to our family and friends for everything! Having a child with a medical condition doesn't just effect the immediate family. It effects the WHOLE family and our friends as well. So, to all of you that go out of your way to help Gavin and us out...weather it's watching the other boys or something as simple as a phone call or card...it means a lot to us and Gavin loves the love :)

XXOO
The Smith's

Just little update...

Gavin has had a great week! He went to school and did awesome! He was nervous about going back to school because he had missed almost a whole month (Christmas vacation and being in the hospital). He was also worried about having an accident :( Because of the ulcerative colitis he has to go to the bathroom right away!

He got another ultrasound done on Friday of his Ureter, kidney & bladder. Hopefully they come back with better results this time. He cried the whole time he was getting his ultrasound done. He was scared that it was going to hurt him. I kept telling him that he will be fine and I will be there with him the whole time. When we left and got in the car he said, "You were right mom, that didn't hurt at all." So I asked he why he was crying if it didn't hurt? He said, "Well, it hurt a little." Hahaha...he is such a trip!

Last night we took the boys to the local Motocross. The kids loved it...especially Gavin. He wants to do it and he is old enough now but we don't think it would be a good idea for him. We don't want to hold him back from what he wants to do. We don't want his Arthritis top run his life, but we don't want him to get hurt (because it takes longer or him to recover) and riding motocross is hard on the joints...........UGH, decisions! We will see how he does on the little motorcycle that have.

After that we went out to dinner. Sitting behind us were 3 college girls. Brigham (our 2 yr old) was a trip and kept flirting with them. When Gavin introduced himself to them he told them that he was in the hospital. I have never heard him tell anyone this before. I was very interested to hear their conversation and his version on why he was in the hospital. When the girls asked him why...all he said was that he had to get some shots and it hurt :(

Monday is Gavin's follow up with his G.I. doctor where we will hopefully have the results from his ultrasound and then we go to the infusion room for his infusions...remicade, solumedrol & IVIG. It will be a long day.

Thanks again for all of the prayers and thoughts! They are working!!! He is doing great and recovering much quicker then we were told he would.

xxooxxoo