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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, December 23, 2008

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 this REALLY necessary? I just want that elated feeling back.

Friday, December 12, 2008


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.

Friday, December 5, 2008

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.