Jenna Had an Eye Appointment Today

Ugh.....I don't know. When we saw Dr. Foster we left his office feeling elated. Today not so much. We didn't get bad news or anything. Dr. Berman said her eyes still look REALLY good and we can start tapering. I don't know there was just this wicked disconnected feeling. He also was INSISTENT on getting her pressures done. HOLY MOLY! It took Larry, me and Dr. Bermans assistant trying to pin her down while he tried to use the Tono pen or whatever it's called. PEOPLE! This is NOT going to work! From my understanding, if she is resisting at all it isn't going to give a proper reading so WHY are we doing this to her?! I am so worn out from it. Jenna slept like a log the whole way home. So anyway.....when she comes back in two weeks he will first try to sedate her to get a reading. If she still resists they will put her under anesthesia. I don't know.......is this REALLY necessary? I just want that elated feeling back.

FYI

About the Playlist......Ava Maria was my Pepere Emiles favorite song. Whenever I hear it I feel close to him and it warms my heart. Jenna never met him, at least not here on Earth, yet she seems to have a special connection to him. Always has. So it seemed fitting to put that song here on her page. Kool and the Gangs Celebration was added today for obvious reasons. 'Cause we're celebrating!! :o)

We Got Good News!!!!!

I swear to you.....this HAS to be some sort of Christmas miracle. No joke. Jennas eyes are......drumroll please........"quiet". That's right....."quiet"! My heart still races today to say that. We simply could not believe it. Just two weeks ago her left eye had "to many cells to count" and her right eye had 5 or 6 cells. Yesterday Dr. Foster said the word I really wondered if I would EVER hear....."quiet". I have never heard a more beautiful word. Here is the theory...... she has been on Methotrexate for her JRA since September at a dose of 0.4 ml 1x weekly. That dose was increased to 0.6 3 wks ago due to a flare up in her joints. The thought is that the increase in dose plus the fact that she has now been on it for three months so it has finally kicked in and is working on her eyes as well as her joints. So from now she will continue the pred forte every four hours until she sees the specialist in Portland on the 23rd. If her eyes are still quiet then we will start to taper. She will need to be seen weekly while tapering. IF the cells come back while tapering Dr. Foster wants to see her back immediately to start Remicade. I honestly am just SO amazed at this turn around. I'm not sure if it's the Methotrexate finally kicking in or.......all the prayer and positive thoughts that all our friends and family sent her way yesterday. Either way a weight has been lifted off my shoulders, there is a spring in my step and my whole world is brighter. I swear that Jennas mood/attitude/behavior is different today to. God Bless you all who prayed for us.

OH What a Day!

SO.......last Sunday Jenna saw Dr. Pirone because she was complaining of alot of blurriness and pain. Dr. Pirone said her cells were about the same. No better but no worse either. She couldn't see any real reason for sudden blurred vision. We tried again to get Jenna to let them check her pressures but she wouldn't do it. I am still very new at this so I had NO idea the importance of this. We went back today for a follow up with Dr. Pirone. She felt there was a SLIGHT reduction in cells but hey ANY reduction is good right? This time with ALOT of bribery Jenna let them test her pressures. Uh oh. I guess we should have pushed the issue sooner. Left eye 46 right eye 35. Dr. Pirone said "normal" is 20 or lower so she was VERY concerned. She had three of the office ladies calling the local specialists to find someone to see her IMMEDIATELY. Okay...okay....don't panic Amy. You can do this. Yeah right. They finally find someone willing to see her and he says send her over right now. Oh my God the kid would NOT comply. Can't say as I blame her. I'd be kinda freaked out too and I'm 34! My Mother and I kept telling her that if she doesn't let the doctors help her she can go blind. Her whole world could go black. She didn't want that but also didn't want them coming near her. LORD...... give me strength. Dr. Moore was SO kind and patient with her. He normally doesn't even see kids so what a blessing. She FINALLY gives in and lets him check her pressures with a Tono something or other? MUCH better reading. Still 35 right but now 24 left. No imminent danger. He told us that we are doing the right thing going to Dr. Foster. He says this will be a lifelong battle BUT with a good prognosis. He has added another drop. This one to manage the pressure until next Thursday when HOPEFULLY we head down to Cambridge to see Dr. Foster. There is something/someone that may prevent us going but God willing things WILL work out. I am so tired I think I could sleep for a week.

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?

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.

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!