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Totties Pretties on Etsy

Totties Pretties on Etsy
Tottie's Pretties are ribbon wrapped headbands adorned with flowers & gems or perfect boutique bows. Banding Girls Together to Find a Cure for Childhood Arthritis. Tottie's supports CARRA and the Arthritis Foundation.

Tuesday, November 25, 2008

I am sooooo confused....

So we got good, bad and confusing news today. Good news.....her platelet count is fine. Nothing out of the ordinary. Confusing news.....Dr.Daihke never called Dr. Kenney about her labs from last week. Hmmmm.......Dr. Kenneys office seemed to think so. So I took her to the lab today for nothing. Bad news.......Dr. Daihke doesn't want Jenna to cheer right now. Oh man she is gonna be upset. He said that until he can get this flare under control he doesn't think it's a good idea. Now this surprises me since all along he has said to let her do whatever physical activity she wants to. He felt the more the better. I guess he is concerned(as are we)that we can't seem to find a medication that will work for her. Cheering is supposed to start tomorrow.....how long do you think I can put off telling her?

Monday, November 24, 2008

Aye, aye, aye....

This poor child. What next? I probably shouldn't ask that. So....over the past couple of weeks we had noticed Jennas knees and one ankle starting to swell. She wasn't complaining so we didn't mention it to her. I just kept subtly checking her out. By the end of last week she was complaining ALOT about pain and discomfort. Also her eyes seemed to be doing better on the drops 4 x daily. Also by end of last week....lots of pain. So I called her rheumatologist this morning and spoke with his nurse. She then spoke with him and called me back. We are increasing her methotrexate and giving ibuprofen every six hours. Lovely. Do this for 2 wks and call back. I am somehow not sastisfied. I don't know what I would have rather them said. I just don't feel sastisfied with what they DID say. A couple hours goes by and her primary doctors office calls. Her routine labs that she had done last week are off so he wants more labs done. Awesome.....cause we had to pine her to the table last week. Her platelet count is to high. Now I know that this is not uncommon in arthritis but it's even to high for her rheumatologist to think it's okay. Great! So what is going on now?! Oh and I also STILL have not heard back from Dr. Fosters office about the crazy $250 payment for her first visit. Thank GOD I started taking meds of my own.

Friday, November 21, 2008

I Hate Being Poor

So we received our new patient pack from Dr. Fosters office in the mail yesterday. If I am understanding it correctly we will need to pay $250 up front for her initial visit REGARDLESS of insurance coverage. We then may or may NOT be reimbursed. We would also need to pay a $250 deposit on any tests that MAY need to be run. HOLY HANNAH! My jaw hit the floor. So I called to get some clarification. I can't seem to get an answer. I spoke with two people who had NO clue what I was talking about. The second person said she would check with her manager and call me back. That was at 9:15 this morning. By 3:15 this afternoon I still had not heard back so I called again. They have been really busy and she hasn't been able to ask. Great. Today is Friday ya know. So I am likely going to be wondering about this ALL weekend. Fanfrickintastic. DR. Foster is "in network" for us so we were expecting the normal $30 copay. Not $500!

Monday, November 17, 2008

We have an appointment......

Thursday December 11th with Dr. Foster! Yay! I am so excited that they can see her so soon. BUT..... I am also SO scared. First off I HATE traveling in unfamiliar areas. I am so afraid of getting lost and missing the appointment. I am also scared about what he will have to say. Just over the weekend I can tell her eyes have gotten worse. She has been assking for medicine every night. She has prescription Ibuprofen for her arthritis. Last night her right eye was VERY red and bloodshot. Today they just look droopy and glazed over. Kind of like someone that's doped up is the best way I can describe it. So we'll see how it goes. December 11th seems way far off yet not really ya know?

Friday, November 14, 2008

It Wasn't Good News

Something in my gut told me it wouldn't be. Jenna went to see Dr. Pirone today for a checkup for her Uveitis. On Monday it was still just the left eye that was affected and it was showing improvement. Today....Friday....the right eye now has inflammatory cells and the left eye looks no different. SO instead of decreasing drops in the left eye we are now INCREASING drops and now doing them in BOTH eyes. Dr. Pirone is so great with her and Jenna REALLY likes her. BUT she is referring her to Dr. Berman who deals with only kids and has more expereience with Uveitis. Jenna doesn't seem herself today. She is very quiet, and is sleeping alot. Maybe she is coming down with something. Maybe she is about to have a flare up. Maybe it's nothing. I don't know. Oh yeah....and Dr. Berman can't see her until December 23rd. Nearly SIX weeks from now! Yikes. That is a long time to not have her eyes checked isn't it?

Wednesday, November 12, 2008

The Beginning






Jennas journey started over the Summer of 2008. One morning my husband said, "Why are Jennas knees square?". I brushed him off, thought he was crazy. A couple of days later I was at the beach with my Mother and my three kids. My Mother says to me, "Look at Jennas knees.....they're square.". Oh crap. Must be something to it. So I look and sure enough. Big square knees. How the heck did I miss that?! So then we started wondering how long has this been going on? And what on earth is it? She said they didn't hurt her. Hmmm......odd. Sure looked painful to us. We went home and looked through pictures on my computer to try to narrow down when this all started. It seemed as though it started in May. So not to long. Next day she broke out in some kind of God awful rash that was INCREDIBLY itchy and painful so I took her to the doctors. While we were there I asked the doctor to take a look at her knees. Oh yeah....she agreed. Those don't look right. The doctor ordered labs and xrays that day. Her xray should fluid and inflammation so she referred her to the ONLY rheumatologist in our state that deals with children. At this point we still had no idea why her knees were like this. Is it arthritis? No clue. Never found out what the rash was by the way. The rheumatologist was able to get her in quickly. Within a few weeks we were at our first appointment with him. He found swollen joints that we hadn't even noticed. What kind of parents are we? Not only were her knees swollen but also her ankle and her elbow. She still was saying nothing hurt. That really puzzled us as well as the doctor. More tests and more xrays. She was sent to the eye doctor to have her eyes checked for inflamatory cells. All clear. Phew!Lyme disease was ruled out. Leaving really only arthritis for a diagnosis. At this point I still was not convinced. MAYBE it's something else. Maybe. Then things started getting worse. Her elbow was SO swollen you couldn't even see the joint. She couldn't bend it now either. Her knees were so big she couldn't stand with her feet together. Her feet were constantly hurting her. Cheering...once a thrill for her was now torture. She was started on Naproxen. At first it seemed to be helping. It reduced her swelling a teeny bit. Then she broke out in these awful blistery type sores. She was having an allergic reaction to the medicine. Her doctors had never seen a reaction quite like it. Of course. She was then put on Methotrexate. I really don't like the sounds of this medicine. It seems SO harsh for her tiny four year old body. She needs to take folic acid daily because of the damage it will do to her immune system and needs frequent lab work to make sure all is well. The rash goes away immediately after stopping the Naproxen. The Methotrexate doesn't seem to affect her stomach or her hair. I was told to expect both hair fall out and upset tummies. After a couple months on the Methotrexate there is still no improvement in her swelling and her pain. He suggests cortisone shots to help get things moving. Yikes. That just sounds SO severe. He assures me this is a very natural step in treatment. Okay.....I trust you. We get her admitted to the Barbara Bush Pediatric wing at the hospital so they can put her under for this. She won't feel a thing and won't even remember being there. Uh huh. NOT what happened. The attending pediatrician decided on her own that it was not neccesary to have her completely out for a "two minute procedure". Wish she had shared that with me! They tried to give her something in her IV line to make her drowsy. The IV failed. Great. She was WIDE awake to have her knees drained and have the cortisone shots. Her rheumatologist was nearly as upset as me. Even he had no idea. My poor baby. I felt like the worst Mother ever. The next day she was very sore and stiff. Still very swollen. I know he told me to expect that but I still was disappointed. But the NEXT day......WOW! Look at those knees! Beautiful, perfect, tiny little girl knees! Holy Moses! I could not believe my eyes. And did she feel GOOD! I had not seen her move like that in so long it made me cry for days to watch her move freely. We saw the doctor is his office the following week and he was more than pleased with what he saw. Excellent range of motion. No swelling, no pain. Oh thank God. He wants to keep her on the Methotrexate for now. Bummer. And sends her back to the eye doctor for a follow up there. Apparently because of the results of some of her blood work she is more likely to develop eye issues. Okay....I schedule an appointment thinking no big. Uh uh. We get there and her optometrist is spending ALOT of time on her left eye. Something isn't right. I feel it. Yup. Her left eye is loaded with inflammatory cells. But NONE in her right eye. The doctor says this is odd. I don't know. I'm still new at this. I learn later that night on my own by scouring the internet that she now has a condition called uveitis. Aye, aye, aye........more? God....she is ONLY four! this isn't right! I know I am not alone but it sure feels that way. So she is started on eye drops. Prednisolone every four hours just in the left eye and Hematropine in both eyes 2x daily. Oh boy....this is fun. She kicks, squirms and screams. Joyous. One week follow up. Slight decrease in cells. She can stop the Hematropine. Yay! this is the only one that she fought me on. Predisolone now every six hours. Follow up this Friday on the 14th. Good news please. PLEASE good news only. So that is where we are at now. Not sure where Jennas Journey will take us but I am sure it will be a wild ride!