We made another trip down to Cambridge MA yesterday. We got a little lost for a bit. That's what we get for trying a different set of directions. We just backtracked, got to a place that was familiar and made our way. NOW the next time we know exactly where to go. Easy as pie. We found that it is best to park at the Galleria then take the free shuttle over to Kendall Square. It pulled up right in front of Dr. Fosters building and runs every 20 minutes.
Now...on to the appointment. As before everyone at MERSI was so friendly and warm. They are wonderful with Jenna. Dr. Foster hit the nail on the head when he walked in, smiled at her and said, "Hi Princess.". He is so good with her. We are definitely going to continue to see him to treat her Uveitis. As of now her eyes are for the most part quiet. Only trace cells. Pressures are good. We are increasing her MTX dose from .6 to .8 this Sunday. Since her JRA is flaring as well it was probably time to increase anyway. Over the next two weeks we will taper her drops to none at all. That way she will have been off the drops for two weeks when we go back to Dr. Foster on March 19th. He wants to see how her eyes respond to just the MTX with no drops. I am SO eager to find out. If she responds well then we will continue to see him every 6-8 weeks for follow ups. I think it's time to get an EZ-PASS. But hey....I now no longer have a fear of bridges or escalators!
Tuesday, February 10, 2009
Jenna had her follow up with Dr. Berman today to check her eyes. I have never been overly impressed with him or anyone else on his staff. BUT since he is the ONLY somewhat local specialist we continued going to him. When we first started going o him Jenna was at a point where both eyes were quiet so we figured we would just see him every couple months to make sure things remain quiet. Odd that while under his care she has slowly gotten worse. On top of that he is extremely clinical and almost robotic. He is a pediatric specialist. He ONLY sees children. There is zero tolerance, compassion or patience. Today Jenna accidently kicked him while swinging her feet. She hardly touched him and he jumped and grabbed her foot. Then her head had tilted slightly so he shoved it back into place. YES....shoved. He got frustrated because she wasn't looking straight ahead. Work WITH her not AGAINST her. Then he said he wanted to test her pressures. Say wha? She had to be doped up on versed last time and she still fought but you go right ahead and try pal. NOW she is really kicking. So with one arm I am bear hugging her to hold her arms down and with the other hand I am holding her foot so she doesn't kick him. He asks his assistant to hold her head still. He is yelling at her to just HOLD STILL. I am calmly talking in her ear trying to reassure her. Then I decide to pull out the big guns...." Do you want a Webkinz? " I just want it over. I'd buy her a car at this point. She calms down and he checks her pressures. They're fine. We are done and leaving. I notice big red welts on her neck, shoulders and cheeks. *GASP* Oh no...uh uh....we are NEVER coming back here. No sir. Oh yeah and by the way...we are increasing drops in her left eye but he doesn't want to see her for FOUR WEEKS. No problem pal...you'll never see her again.
Friday, February 6, 2009
So I normally only blog after doctors appointments. No appointment but lots of swelling and pain. Her knees and one elbow have been swelling off and on. One day her knees will be big balloons. Next morning....nothing. Her elbow seems to be staying puffy. She complains alot about her back, legs and now her arms too. But does she slow down? NOOOOOOO!!!!! Yes I KNOW she is only five years old. She is playing like a normal five year old should. But that's the thing. She ISN'T a normal five year old. I hate seeing her in pain like this. Time to call the rheumatologist. Of course it's the weekend so we'll have to wait until Monday. She is currently on .6 MTX. He says there is plaenty of room to go up. She is also taking her prescription strength ibuprofen 3x daily. Cheer 101 starts in less than a month. She is so looking forwrad to it. We have GOT to get this under control by then.