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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.

Thursday, May 7, 2009

Another Setback




For the last few weeks Jenna has been complaining of pain in her eyes as well as periodic blurriness. At first she was dealing with a really nasty cold so I thought MAYBE it was just sinus pressure? As the cold went away...the pain didn't. Yesterday she went to see Dr. Pirone, our regular optometrist. In less than a month she has gone from "quiet" to active inflammation. Holy Cow...I thought maybe just a couple cells were sneaking back in...nope...3+ in the left and 4+ in the right. She said there were "too many to count" in the right. So Dr. Pirone made a call to Dr. Fosters office to see if they could get her in on an emergency appointment. We went today for a 9:45 appointment. This meant leaving my house in Sabattus Maine at 5:45 to make sure I got down to Cambridge Massachusettes by 8:45 to park in the Galleria garage and take the shuttle to Kendall Square. We nearly didn't make it. Traffic was at a stand still once we hit 93. Apparently this is "normal" for Monday - Friday mornings. Good God. Anyhoo...so we go through all of this to wait until 12 o'clock before she saw Dr. Foster. Yuh. He then looked BRIEFLY in her left eye. Never in the right...and that is the bad eye...he only looked in the not so bad eye...BRIEFLY. Then he gives us our options for meds...which he did at our last visit. Either monthly Remicade infusions. Yeah because I want to make THIS drive every four weeks. Or weekly injections of Humira done by yours truly at home. Oh yeah...and that burns as it goes in. Decide what we want to do and discuss it with her rheumatologist at her next appointment...thank you and have a nice day. HUH?? Hold on and BACK UP. I drove all the way down here then waited 2 and a half hours for THAT? Nice. I know that he is the best in his field but really...a little personality and bedside manner goes a long way. AND he could have told us this over the phone! She is back on Pred Forte 4x daily for the time being. I hate those stupid drops. They make me more nervous than the Uveitis itself. Jenna is scheduled to see her Dr. Daihke (rheumatologist) on the 21st of May. Not soon enough. I am going to call tomorrow to speak with his nurse to see if we can't get her in next week.


On the plus side...we got to meet some friends today!! Joanne and Jacob! When Jenna was first diagnosed last Summer I started doing google searches and http://jacobsuveitisandjrajourney.blogspot.com/ kept coming up. I learned alot not only about the diseases but what it meant to be a Mom of a child with these diseases. We corresponded via email for awhile then became Facebook friends. She has been SO helpful. She is a wealth of knowledge as well as a virtual shoulder to lean on on those bad days. This morning Jacob and Jenna had back to back appointments. So I suppose the day wasn't a total wash. OH! And I got to have lunch at California Pizza Kitchen :o) YUMMMM!!!

3 comments:

S and S said...

We did a special prayer for Jenna and your family today. I'm sorry your appointment didn't go well. Some doctors should take education classes on how to deal with children!

When I had a cyst on my lower back and I had to go to the ER, there was one nurse who literally ripped down my PJ pants. When I said it hurt she turned to my mother and said "not a high tolerance for pain, huh?". My mom just looked at her and the doctor asked the nurse to leave ASAP. The doc kept apologizing for her. I wanted to go jab a pen into her tail bone then wiggle it around and ask her if she had a high tolerance for pain!!

Dana said...

I am so very sorry to hear that you and Jenna had such a long, rough (and impersonal) day. We have had days like that with doctors and it is completely infuriating and exhausting! I still can't believe you drive down from Maine - that is amazing to me! I know how the trip is for us and we aren't that far outside of Boston!! After getting there, parking, seeing the doctor, and keeping a three-year-old happy, I just want to collapse when we return home.

Loved the picture of you, Joanne and your kids! How awesome that you got to meet for the first time! At least that made the day a bit better. :)

Amy Cunningham said...

Sam...as always thanks for your prayers ;o) Your story is both comical and sad at the same time...thanks for sharing it!
Dana...yep we trek it all the way from Maine! We really have NOONE to choose from up here. We have ONE peds opthamologist and he is a jerk. He left marks on Jennas face and neck from restraining her just to look in her eyes. So...we go to MA. It normally isn't to bad. Yesterday was the first time we hit that kind of traffic. And apparently Dr. Foster was having a cranky pants day :P