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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.

Tuesday, May 4, 2010

PHEW! That was a relief.

Last Wednesday April 28th we took Jenna to see her new rheumatologist at Brenner's Children's Hospital in Winston-Salem. I had been sweating this so bad. What if we were making a mistake switching her? What if we hate it there? What if the doctor is awful? I needn't have worried. The drive was so easy & short in comparison to our haul to Duke. The hospital is beautiful and everyone was so helpful and friendly. Her new doctor is GREAT!! Friendly, personable, funny and most importantly he spoke to Jenna not us. I love when doctors do this. She is getting much better at communicating with them too. For those that don't know, Jenna is painfully shy!! But I feel it's important for HER to tell them how she is feeling. Not us. So anyway, it all went well. Until...he mentioned labs. We knew it was coming. She was overdue as it was. We warned her about it, but as always with Jenna, if it's something she doesn't want to hear it goes in one side and out the other. This was hands down the WORST trip to the lab we have ever had. Thank goodness Larry was there. After chasing her around the room and unsuccessfully holding her down myself, we brought in Daddy. He bear hugged her while I held her arm still. Dang that kid is STRONG! The phlebotomist was great too. She used Jenna's left arm, tied the noodle over her sleeve, and was in the vein like a hot knife through butter. All things Jenna prefers. Yet she still fought us. She cried for most of the hour long ride home :'( The real heartbreaker was in the middle of the screaming and fighting she asked me, "Why do I have this?! How did I get it?!" She really broke my heart with that. But other than all that the appointment was great! The meds are doing their job and she looks GREAT!
Now...about those meds. For awhile shot night had been okay. Yes she would cry. Yes she would give a tiny scream with the Humira injection. But that's all to be expected. Now? She screams and fights the whole way through. It's awful. Even for the MTX. It's killing me. Slowly but surely I swear it's killing me to do this to her every week. We know she needs it. SHE knows she needs it!! Doesn't matter. She's back to waving her legs around to avoid the needle and trying to grab at it once it's in. The whole time she is screaming, "Ow you're hurting me!! Please don't do this to me! WHY do you have to do this to me!". I keep expecting the police to show up. I do know that one day this WILL get better. I am also thankful that she has these meds available to control her diseases. But it still sucks right now. The good news? She has been under control for going on 5 months now. That means 19 more months and we can start to wean. I pray SO hard. SO hard that her body will stay quiet for these next 19 months. Just 19 months. Please God let her do it.