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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.

Sunday, May 17, 2009

I am a Little Late...




...with this post. Jenna went to Dr. Daihkes (rheum) on Friday. This was a follow up from her appointment with Dr. Foster in reference to changing her meds. I have NO idea WHO I am supposed to listen to! Dr. Foster basically said it is up to us but recommended either Humira injections at home OR IV infusions of Remicade. Hmmm...such fantastic choices. Dr. Daihke says that he has seen great success with Enbrel injections in his peds patients with JRA & Uveitis. According to Dr. Foster Enbrel will NOT work for Uveitis. HELP! Right now we are awaiting insurance approval and a Tuberculosis screening for the Enbrel. I am thinking that I would like to TRY it and see. I have faith in Dr. Daihke. I KNOW he will not jeopardize her. Yeah...and that TB test is not only required...but painful. Fabulous. She will have that done on Monday with her 5 year immunizations. I can't wait. Fridays appointment included her routine labs. Love those. My 40 lb 5 year old suddenly has super human strength and about ten extra arms and legs when someone comes at her with a needle. I am really hating this disease these last few days.


On a good note...Jenna got to perform her cheering routine with her Cheer 101 squad today :D She did SO super duper good! I am so thrilled for her that she was feeling well enough for this today. She rode that high for a few hours and has now crashed.

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!!!