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?
This is the story of Jenna (AKA Bean). Diagnosed at four years old with Juvenile Idiopathic Arthritis and Uveitis. This is her journey....
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.
3 comments:
Wow! I know that as a woman going through the ups and downs of rheumatoid arthritis for the last five years, never knowing what to expect from day to day, it is a challenge. As a mother, I know watching your child go through something like this would be more painful and drive you crazy trying to figure out what to do next.
Sending lots of healing thoughts your way for Jenna, you and your family. Thanks for sharing her story.
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I am going through the same problems with my 4 year old. She was diagnoised at only 14 months old. I am sure you are doing a great job. It is hard because doctors don't always know what these kids are going through. I have been using benadryl with my girl. I helps with the cold and helps her sleep. Sometimes steroids can help but there are side effects with everything. Also I have found some forms from the internet helpful on keeping accurate records of the symptoms.http://www.arthritis.org/media/Regimen_Checklist_Symptoms_Forms[1].pdf If you keep good records it is hard for the doctors not to believe you. I would love the opportunity to talk to you more. I am from a smaller town and have not had the opportunity to meet other parents of children with JRA. I have contacted the Arthritis Foundation they are very helpful. They have given us free literature, signed her up for excerise programs she the only kid but seems to like it anyway. We recently applied for a family sponsarship to send us to the national JRA conference in Texas. I put my blog address at the top also my e mail is mroberts4@missouriwestern.edu. I think us parents have an insight to what the JRA really does mean to our children. Things that your doctor never tells you. My daughter has been on and off Methotrexate since she was one. We battle side effects. I know there is not a lot we can do but get the arthritis under control and get her off the medication when we can. I know there are not many pediatric rheumatologist. We did find another one for a second opinion and the methotrexate is still the drug she reccomended as well. It deffently is ups and downs with this condition. And I cringe every time she gets sick because we've been to the hospital so much. My little one did great with the labs until the ER got ahold of her. She had been so sick and was dehydrated. Now its an all out fight everytime we need labs. I will add you guys to our prayers. Remember you are not alone. There are more like us. You seem to be taking an active role. I set up google alerts to send me e mails every time anything is posted on JRA that's how I found your blog. Just keep pushing and this too shall pass.
Cathy...I have no idea how Jenna can cope as well as she does. She truly amazes me. I guess maybe it is because she simply doesn't know anything else? The day that I made that post was just a really frustrating day...and it came through. Most days are easier but I do feel as though we are just floundering. Thank you so much for your healing thoughts. We need all we can get :o)
Supermom...I am definitely going to print out those forms. It can be so hard to keep track of everything. thanks for that tip! I have been hesitant to use Benadryl. She takes SO much other junk ya know? Maybe I will try iy tonight.We also live in a small town and when I say "JRA" I get a confused look from people. Then when I explain they think I am nuts! That a young child CANNOT possibly have that. *sigh* We also have a very similar lab story. She would cry but not scream, kick and fight. Just some tears when she had her routine labs. Then...she was having some sort of reaction that we couldn't pinpoint (turns out she was allergic to Naproxen). We ended up at the ER one night because she was in so much pain from it. The idiot from the lab was HORRIBLE. He lost the vein and was twisting and turning the needle while it was still in her arm! Anyway...I do go on :D Thanks so much for all of your tips and encouragement and I hope to hear from you again.
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