It occured to me today that I only update after a doctors appointment. But there are other events worth blogging about right? Such as Jenna starting Kindergarten! Wow...we are here already? Doesn't seem possible. I was really worried about how she would handle it. Her school is all day Kindergarten. She went to preschool 3 mornings a week for 3 hours. That was enough to make her a grumpy bear for the rest of the day. She gets worn out so easily. So now ALL day EVERY day?? Plus gym class, recess, sitting in a chair all day. Would she be able to do this? I loaded her teacher with information on JRA as well as Uveitis but told her not to make any special accomadations for Jenna until she says something is bothering her. After a week I hadn't heard anything from her teacher so I emailed her asking if everything was okay. She told me that Jenna hasn't complained of pain or discomfort at all and that she seems fine in class. We notice that she is sleeping later and by dinner time she is kind of glassy eyed but other than that? I'd say she is doing super :D
Tuesday, September 15, 2009
...but it wasn't great news either. Jenna had her first appointment today with the pediatric opthamologist at Duke Eye Center. Other than occasional complaints of sore eyes at night she has really been fine. So I was expecting an all clear again like we got in June. With the first look the tech said right eye is clear, left eye she could see some floaters but she kept losing them. So she dialted her to get a better look. I MUST pause here to tell you what an incredible job Jenna did taking those drops. Drops at the eye doctors have ALWAYS been a fight and I have to hold her down while the doc or tech fights to get them in. Today she sat right there like a big girl and let her put them in. :D Okay so....after waiting oh I don't know FOREVER in the back waiting room they finally came back for her. This time the tech did some other things I've never seen. Don't know what they were. Then when she looked in her eyes again with the slit lamp she didn't say anything. Oh...that can't be good. So we are sent back to the waiting room for about fifteen minutes then brought back in to see Dr. Wallace. Great guy by the way. Super nice. Very personable. I could tell Jenna was comfortable with him right from the get go. So...he looks in each eye taking his time and says she has "some...not alot...but some in each eye". I let that sink in while he made some notes. Then I asked him if I could get a number please? He says about 6-8 per eye. Okay...not so bad. With Uveitis cells are measured in 10's so less than 10 is pretty good. Just means we caught this flare in the beginning. She has been 3 and 4 + before which is 30-40 cells per eye. So not so so bad today. Still makes me mad though. On the one hand I want to praise God that my baby isn't suffering from some horrible, incurable disease that will take her from me. On the other hand I think," C'MON! ENOUGH already!!!!! Give my kid a break!" I hear of other kids in medicated remission...so why not her? Okay...deep cleansing breaths. I don't know...I am grateful, I really am. It just hurts a Mother to see her child not well in any capacity I suppose. So she goes back on Pred Forte 4x daily until a recheck in 1 month. Since she is in school all day now that means she will have to go see the nurse everyday at noon for drops. I know that this also means that the rheumatologists will NOT want to keep her on Enbrel. It clearly isn't managing the Uveitis. Ugh...and she is doing SO super good taking it! Tomorrow I get to call both the rheum and the opth offices to try to coordinate her appointments with them in one day. THAT oughta be fun huh? I guess that's it for now. I videoed Jenna getting her shot tonight so everyone can see what a big, brave girl she is about getting it. Okay maybe a more fitting description would be kookie and wacky? Watch...you'll see ;o) 'Til next time folks.