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
Our Boys
Gavin with his brothers
Wednesday, February 23, 2011
Tuesday, February 22, 2011
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
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
Thursday, February 10, 2011
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
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
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