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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.

Wednesday, April 22, 2009

I am Annoyed }:-[

I am really annoyed and I am not even sure WHY exactly. Jenna has been sick for about a week now. Started out as just your basic Spring cold. Runny nose, cough, no big deal right? Well apparently for a small girl with a compromised immune system it is a HUGE deal. She sounds and looks like crud. Her fevers are running anywhere from 101-103. She isn't hungry. She is EXHAUSTED. Falling asleep in strange places at strange times. *sigh* Finally broke down and called the doctors office this morning. Got her in right away...not much they can do :-( It's a viral infection that just needs to run it's course. I guess I KNEW this already and that is why I waited so long to call. She is being put on an antibiotic just to be sure all bases are covered but it isn't likely to help.
Also...over the last few days her eyes have been bothering her. GRRRRRR! Photophobia, rubbing them alot, saying they hurt, blurred vision. Is it the cold causing this? Is the Uveitis back? WHAT DO I DO?? I feel so lost and confused in all this. So I finally decide after today's doctor appointment to call Dr. Pirone and schedule an appointment to check her eyes. Ready for this? May 6th...yeah...2 weeks away. Seriously?? I want her seen NOW. I guess I am just frustrated. I don't know. What am I missing? Is there something more I should be doing for her?

Wednesday, April 8, 2009

She is in so Much Pain


My poor Bean has been in so much pain lately. I just don't know what to do for her. She is her own worst enemy of course. Seeing as how she is an active five year old she isn't exactly doing anything to help herself out but what am I supposed to do? FORCE her to lay down and rest her body?? How on Earth would I even do that? It has been at least 2 maybe 3 weeks now that she is walking funny. Complaining ALOT. She can't sit in a chair. She does this weird squat thing. Doesn't look comfy to me but hey it works for her. I can't get her to keep shoes on her feet. We keep buying different ones hoping we will find a pair that feels good. So far the only thing that feels good is bare feet. Socks are usually off too. Fine at home but out in public we get some looks ya know? Plus who knows what she is walking on. *shudder* She is complaining of pain in odd places. She has the normal leg and feet complaints but now she also has chest and eyebrow pain. Huh? What the heck does THAT mean?? Again...she is only five so getting her to articulate these pains is nearly impossible. Is it an ache or a burn? A sharp pain? Where exactly is it? Is it your heart? Lungs? Ribs? Breast bone? What do you mean your eyebrow? Is it your eye? HOW does it hurt? ARGH!! I called our regular family doctor so I could check in with her to see what she thinks about how Jenna is doing. May 19th!! That is the soonest she can see her. *sigh* Yeah I CAN call her rheumatologist but I am just not sure that he is doing all he can for Jenna. So DO I call him? I just don't know. All I know is that we have not tamed this beast sufficiently. Instead of showing signs of improvement she is getting worse. She didn't even want to go to school today. Jenna LOVES school. LOVES it. Loves her teacher, loves all her friends and the activities. Plus the playground is accessible now that all the snow finally melted. She LOOOOOves the playground. She clung to me wanting to stay home. I hugged and kissed her, pried her off my arm and sent her away with Daddy. Did I do the right thing? I just don't know. She is also SO tired. Is it the meds? The disease itself? Is it a disease? Or a condition? Anyway....I am attaching a photo taken last night. Her knees look awful to me but what do I know?

Thursday, April 2, 2009

We Got to See Dr. Pirone Yesterday :)

Dr. Pirone is the first optometrist that saw Jenna and diagnosed her with Anterior Uveitis. We LOVE her. She has rheumatoid arthritis herself so she is very knowledgeable of the disease as well as so compassionate. She is so kind and gentle with Jenna. When the cells continued to multiply at a rapid rate that is when she recommended we see an opthamologist because it was beyond what she could help us with. Now that Dr. Foster has gotten the Uveitis under control we can do follow ups with Dr. Pirone. YAY!
So it was a good appointment. Still all clear! No pressure check. *sigh* She is still so freaked out by that. I don't know what we are going to do to get them checked. BUT...she said everything looks good for now. We know what to look for and if we start to see signs we will bring her right in.
A friend of ours that has a son with JRA and Uveitis had their routine 8 week follow up with Dr. Foster yesterday. Unfortunately for them it was not good news. His eyes have been quiet and off drops since last July with good pressure readings. All good right? Apparently no. He has developed a cataract in his left eye. A very big wake up call for all of us. It was our understanding that cataracts was caused by extended use of drops and or high pressures. It seems as though the damage left behind by Uveitis can cause cataracts as well. So please add our friend Jake to your prayers. We would appreciate it.
On another note...Jennas joints are already starting to swell and ache again. Not good but we are watching closely. We were really hoping for this latest MTX increase to last longer than this! Only worked for about a month. COULD be the lousy, cold, damp weather we have been having. I don't know. Time will tell.
As always...thanks for reading!