Yesterday was Taylors first visit with the Pediatric Dermatologist. Although the first Dermatologist we met with was a very nice man, it was not nearly as positive of an experience as what we encountered yesterday. I can honestly say, the health care provider plays such an integral role in a disease like this and I am thankful that we found someone like Dr. C...
So, at 12:00pm yesterday I rushed out of the door in my typical hectic style. I had my purse on my shoulder, Taylor (my daughter) on my hip, her shoes in one hand and her bottle and sippy cup in my other hand. I "threw" her in the car, put her shoes on her and climbed into the front seat. We drove to her pediatricians office and picked up her blood work, all normal, and then headed to CVS to pick up pictuers. I had about ten photos printed off that documented the hair loss from December until now. I stood in line annoyed because there was one cashier who seemed to be in no rush to check the rest of us out. A random man stood in line behind me and made small talk of which I could not tell you WHAT he was saying. I think my nerves had begun to get the best of me, but I was determined to not lose my cool despite the ten minute wait. Finally I got the pictures and we rushed to the car. I realized I now had exactly an hour to go an hour and eight minutes (My Navi's estimated time... and yes, my navigation system has a name, her name is "Navi"). Luckily, I remembered the speed limit on '97' (route 97? highway 97? I just know it as 97) was 65 mph, so I convinced myself I'd make up that last eight minutes!! I was familiar with Baltimore because I went to college in the area and so I had no concerns that I would make it to Hopkins without trouble. I was correct on all accounts. We made it there in an hour and without any issues. I turned into the parking garage, and a five minute walk later we arrived at the office. As is typical with any specialists office, we spent a decent amount of time waiting. During the wait I pulled out the photographs. I lost my breath as I looked at the first picture. There was my baby... my BEAUTIFUL little girl on her first birthday with a head full of brown (with a red tint) hair. Her eyebrows were the most perfect shape and her thick eyelashes illuminated her crystal blue eyes. I just stared, speechless, thoughtless. I looked over at her as she was running around the exam room. She was still beautiful, but it was painful to compare how different she looked. I tried to shake the feeling and flipped through the rest of the photos. I am with my daughter 24 hours a day, every day and so it wasn't until I really saw photos that I realized how drastic of a change she had undergone. It hurt. But, "life goes on", I reminded myself and I put the pictures in chronological order so that the doctor could see the transition of hair loss. I placed the pictures with the long list detailing our family history of auto immune diseases as well as a list of questions that my husband and I had prepared. I waited patiently watching Taylor destroy the exam room, a normal, healthy 16 month old.
Shortly after, there was a knock at the door and the doctor entered. He shook my daughters 16 month old hand and then introduced himself to her teddy bear and shook the bears hand. After speaking to her for a few seconds (no doubt trying to make her feel comfortable), he shook my hand and introduced himself. We reviewed the family history, her hairloss, the pictures, etc and he said "normally we would run other tests, but given the extensive family history of autoimmune disorders, there is really no question that this is Alopecia". We went on to discuss what that meant for her future and Dr. C relayed to me that her regrowth chances were not great but that he was by no means going to give up trying. The first treatment trial: UV light. That's right, the doctor said to put 50 SPF on her and continue to reapply it as directed and keep her outside all summer. So, it looks like we now have doctors orders to spend the summer at the beach, the pool, the waterpark, the zoo, the park and any other outdoor place we can think of. That is one treatment that I have no problem signing her up for!!!! Many people apparently experience some kind of regrowth from UV light treatment and so I am optimistic as we head into the warmer weather.
September is when we head back to Hopkins for the next appointment. At that point we will assess the effectiveness of the UV light and discuss the possibility of trying Rogaine or other topical steroids creams. I am excited to see if any of these things work, but certainly do not want us to get our hopes up. I asked my daughter what she thought about all of this and she responded "a dada dadada". Driving home from the appointment I turned the music up after making my phone calls to family members. I looked in the rearview mirror and watched her dancing to the music. Fist pumping, to be exact. She had me in hysterics laughing because of how care free she was dancing along to rap songs that she shouldn't be listening to in the first place. She switched from fist pumping, to itsy bitsy spider moves, to "shaking it" (when she gets her whole body going and moves her hips and torso)... All of this in her carseat without being prompted. Heck, at first she didn't even know I was watching her. She just looked at herself in her carseat mirror and moved to the music. She is so care free. She doesn't care or even know that we are going to these appointments because she does not have hair. She is happy, healthy, outgoing, and a born entertainer. Her strength gets me through this...
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