I decided to call Parker “Super Tease” because of how much he loves to tease everyone. I know I’m real creative. Anyways, as for Parker he had another eye appointment yesterday. His eye pressure has gone down even though he’s still on the eye drops, which is a good sign. But, he still has “cells” (inflammation) in his eyes. So, now we are off to see the uveitis specialist in a week or so. Who knows what they will end up doing…just have to wait. I HATE to wait, but what can you do? Oh and if you are wondering about his outfit in the pic, well, he loves those pajamas and insisted on wearing them, so instead of fighting him on it, I just left him in them. It was a day when I didn’t have to go anywhere, so only me and the neighbors saw him. And, he also had to have his cool dinosaur sunglasses and I make him wear the hat, because the sun is really hard on his white skin. Anyways, he looks like a real super hero don’t you think?

Super K is doing good. We went to get his third and final cast on him on Wednesday, but when we got there, the therapist had Keaton run for her and she watched him walk, and she couldn’t believe how good he looked. She watched him for a while and decided maybe it would be better to not cast him and just make sure he wears his braces. He has one he wears during the day and one he wears at night. One day maybe I will get around to taking a picture of them, but I’m too lazy right now. Anyways, he is doing really good. He looks a lot better when he runs. It’s been exciting to see him doing so good.

Last weekend we went on a walk on the river trail, and it was a lot of fun. The kids found some reeds and sat by the river and pretended to go fishing. Scott and I aren’t big fisherman, but my kids love to go fishing. Grandpa B will take them every once in a while. Anyways, they would fish a lot more, if Scott and I were more into it. Maybe one day I will get a fishing license. But, for now I don’t really want to, because I would probably take them one or two times and it’s just not worth the expense, so I guess they will have to use the reeds for a while longer.

The story of my life: Me chasing the kids

Berkley catching some rays

Here’s sweet Jaxon with a beautiful flower for Mommy.

A song by Jaxon:

“Five little monkeys hanging from a tree. One fell off and didn’t get hurt. Momma called the doctor and the doctor said, Do it again!”

Keaton talking to Scott:

“I want to get big and be a big kid, just like you Daddy!”  —–ha ha…see he knows Scott is really just a really big kid.

We went to see the rheumatologist yesterday, and as far as Parker’s joints go, he’s fine…which is good.  So the rheumatologist said if his eyes were clear, she wouldn’t prescribe anything for him.  But, since he is having problems with is eyes, she decided to call the uveitis specialist that we will be seeing here in a few weeks, and ask him if he would want us to start Parker on the methotrexate again.  She called me back today and the uveitis specialist (Dr. Vitale) said he wants to see Parker first and to hold off on the methotrexate. I feel okay with that. In the mean time we will be going to the opthamologist each week just to make sure Parker’s eyes don’t flare up again, and we will keep him on the eye drops. I’m not sure if Dr. Vitale is maybe thinking of putting Parker on some other kind of medicine. I guess we’ll see what happens. As for now, he’s doing good, and taking the eye drops okay. Once we know  where we go from here, I will let you know.

The best part of our day yesterday was when we picked Scott up from work. Parker was showing Scott the cars they gave him at the doctor’s office….they had to draw his blood, and they always give him some form of little toy afterwards. Anyways, Scott asked Parker how come he got the toy cars and Parker said, “Because, they had to suck my blood.”   Ha ha…too funny.

The last couple of weeks have been crazy with all the doctor’s appointments we’ve gone to, but I finally have a “day off.”  We saw Parker’s regular eye doc yesterday, and his eyes are doing much better. The inflammation has gone down, and the doc said he’s not even at a 1+ for the cell count, so that was REALLY good news. The bad news was that the eye drops he is taking can have side affects, and his eye pressure is high, so they need to get him off the eye drops as soon as possible, but they don’t want to take him off too fast, because they don’t want the inflammation to come back. So, we will see his rheumatologist tomorrow, and they will probably put him back on the chemo….darn, but it’s the best option for now.  Then, in May we will see yet another doc…the uveitis specialist. I wish we could just go see him now, but he’s so busy that May was the soonest they could get us in. They might end up putting him on some other form of medicine…I don’t know. We will just have to wait and see. But, at least for now he’s doing good, and in the mean time we will be seeing the regular eye doc each week to make sure his eyes are okay. As for Keaton, they put his second cast on yesterday and he is tolerating it much better than last time. I hardly even notice he has a cast on, and this time he looks really good when he walks. The therapist bent his ankle a little farther than last time, and she also put some padding on the outside of his foot to try and force him to walk more on the inside of his foot. One of his problems is that he has a tendency to walk on the outside of his foot. But, right now in the cast, his walking looks really good. The foot is nice and flat and he’s not going to the outside, so the padding worked.  So, for now things are going better….I know everyone has their bad days, and we are no different. If you can just make it through the bad days, it’s really not so bad. 

I have been reading more about uveitis and the problems that can occur.  Here are some websites you can read if you want to learn more.

Uveitis Web

Web MD info

I haven’t completely understood all the things that come along with the disease, but this is the 3rd time that Parker has had his eyes flare in the last year or so, so I have been trying to find out more about it.  I thought we had taken care of it the other two times before, so I wasn’t extremely worried about it, but it just keeps coming back.  Parker’s cell count in his eyes is a 3+, which I found out is a “severe” case of the disease.  It can cause cataracts, glaucoma, and even cause you to go blind, so it’s not something to take lightly.  He’s doing really good with his eye drops.  He’s been a brave little super hero.  We are going to go see the uveitis specialist next month so that will be good.  I also found a blog about another little boy who is dealing with a lot of the same stuff Parker has gone through.  That blog explains a lot about JRA and uveitis.  If you are interested in finding out more about all of it, you can get on their blog.  It’s listed under “JRA Blogs” on the right hand side of this web page, and you just have to click on “Jacob.”  His mom has a lot of good info on there.

Well, anyways, since uveitis is all I can think about right now, I decided to post a couple links and let anyone else who is interested read more about it.  We go see his regular eye doc again next week.  I’m crossing my fingers and hoping it’s getting better.  Other than all of that, we are all doing really good.  Our house is as lively as ever, and full of smiling little boys (most of the time).  For now, I am going to go watch a movie. 

Good news!!!  We survived the second day with Keaton having his cast on and giving Parker his eye drops.  Keaton keeps asking me to take his cast off.  I took this picture right after the  therapist put the cast on.  Keaton was pretty mad by that point, and refused to look at the camera.  Today he went outside with his cast on and got it a little wet.  He’s supposed to wear the cast shoe, because the therapist said if he didn’t, the bottom of the cast would just get torn apart.  Well, he only wears the cast shoe when he goes outside.  He refuses to wear it in the house.  But, I think the way it’s going, we might just make it through all of this!    Parker was awesome today with the eye drops.  For the most part he let me put them in.  A couple of times he ran off and tried to hide.  I guess he was hoping if he hid long enough I would forget that we needed to put the eye drops in.  And, as for Parker’s eyes…they are looking so much better.  Supposedly his eye disease is asymptomatic, meaning there are no symptoms.  His eyes can be doing bad and the doctors told me he wouldn’t feel a thing.  But, I don’t believe it.  Every time he’s had problems with his eyes, he has complained about pain, and he becomes very sensitive to the lights.  Just turning the light on in his bedroom in the morning bothers him.  He had been telling me his eyes hurt and acting like the lights were hurting his eyes, so I wasn’t surprised when the doctor said there was inflammation in his eyes.  Another thing that happens is that his eyes get swollen and puffy, kind of like when you haven’t had enough sleep.  It’s not really noticeable to just anyone, but being his mom, I notice it.  His eyes will just look all puffy all the time, and sleeping doesn’t help them look any better.  Anyways, his eyes are looking much better….not so swollen and puffy anymore, so I’m pretty sure the eye drops are working.  Now I just want to get in to see the rheumatologist, and I’d actually really like to just go take him to the uveitis specialist.  His eye problems have been a recurring thing, so it would be nice to go to the specialist and see what he thinks.  So all in all things were good today….not quite so tense as yesterday. 

So, ends the first day of eye drops.  We actually did pretty good.  Parker fought me a few of the times, but he also let me put them in some of the time, too.  What a looooooooooong day this was!!  I went to pick up his meds this morning, and the pharmacy only had one of the prescriptions we needed, so I had to call around to some other pharmacies to see if they carried the prescription he needed.  Thankfully, I found a place to get it.  I was trying to get the eye drops in each hour, but Keaton also had an appointment today, so I had to leave Parker with grandma…..and I couldn’t believe it, but grandma was able to get him to put the drops in a lot easier than I was able to.  Thanks grandma!!  So, Keaton got his leg all casted.  They set his ankle in neutral, and next week they will put another cast on him, and bend his ankle a little bit farther, and keep it that way for another week, and then the week after that the same thing, and then they take the cast off, and see if he can bend his ankle any better.  Keaton hated his cast, and screamed all the way home.  After we got home, he fell asleep for awhile, but then he woke up and followed me around crying and asking me to take his “brace” off….He calls the cast a brace.  So, it was just a really long day for me.  After trying to tackle Parker every hour, and trying to explain to Keaton that he couldn’t take the cast off, it just really wore me out.  But, I guess there are good days and bad days.  I’m just not sure what to think about Parker, because every time they take him off his meds, the arthritis flares up again.  I guess we’ll take it one day at a time.  Before it’s over, I think he will be sent to see another doctor….another eye doctor who specializes in uveitis (that’s the name of Parker’s eye disease).  Too bad my little super heroes can’t cure their physical problems with their super powers.  We have 4 super heroes living at our house (or so I am told by the little monsters). 

Today Parker and Keaton had appointments with the eye doctor…..So the good news or bad news first??  Let’s go with the good.  Keaton’s eyes are doing good.  They are crossing a little bit, but the doctor said he still has good control over them, and he thinks his eyes probably just cross when he gets tired, and it’s harder for his brain to control the muscles.  So, we just stay the course with Keaton…keep him wearing his glasses and watch him for the next 6 months.  Then, we have Parker….poor Parker.  His eyes have a lot of inflammation in them.  I have to go pick up eye drops for him, and some other kind of cream stuff that we will be putting in his eyes.  I have to give him the drops every hour for two days!  That’s a lot considering how bad Parker hates the eye drops.  Then at night we put the other stuff in, which the night stuff is thicker—some kind of steroidal cream.  Then, after the two days of drops every hour, we get to cut it back to 4 times a day.  Crazy!!!  Wish me luck with this one.