Sensitivity to Sunlight

Cool! I'm headed to Lexi's softball game!
Go ROCKET FIRE 10 & Under Team!!!
I just had my bath and I'm giggles. I get that way when I'm somewhat sleepy.
Her hair is so cute pulled to the side. I can't wait for the day I can take that STARband helmet off for good. An hour each day is just enough time to tease her.

Showing off my new velcro on sunglasses! I'm ready for the outdoors now!
Still giggling...mom is playing itsy, bitsy spider with me and I smile every time.
Trying to keep my smile even though I hate the sun in my eyes.
Smiles behind the pacifier!

We all love to enjoy the spring weather and be outside, right? Well, I've found this to be challenging over the past year with Alayna. Last year if she'd see the sunlight, or any bright lights for that matter, it would trigger a sneeze. In turn, that would set off her gag reflex and then she'd even sometimes throw up her bottle. It wasn't fun to battle at all! So, we stayed inside more than usual all spring and summer.

One of my goals this spring and summer is to get outside more. Alayna still sneezes, but she doesn't throw up! Yeah. That was a huge milestone for us. I'm beginning to miss getting outside, playing with the kids, working in the yard, or just taking a walk up the driveway. The only issue still is Alayna's sensitivity to sunlight. It holds me back from being outside more. Last year was easier because she was in a rear-facing carrier on top of the stroller, but now she is in an umbrella type stroller and occasionally she gets the direct sunlight right in her face. She hates the bright sun and won't even open her eyes. She is unable to see the outdoors and look around at her surroundings. She's missing out!

After posting a "help me" email on our 1p36 support group site, I received quite a few helpful tips. Remember, the parents of 1p36 kids are truly the experts on anything. And they are always right there eager to offer help. Of course, I tried to use a blanket to shade her, but we all know that doesn't work 100% of the time and how much fun is that for her? So, one suggestion I got was velcro sunglasses. I've never seen them before, but I found them at Target and bought 2 pairs (one for a back-up). They are the coolest thing if I can get her to keep them on. Alayna is modeling them above. I'll have to put them on before the helmet though because otherwise they are not right up next to her eyes and the sun can sneak through. I'll let you know how she tolerates them. And the other suggestion was to buy an attachable umbrella for the stroller to provide additional shade. They supposedly have them at Walmart and Toys R Us, so I'll check it out when I go there soon. And I think we'll stick with wearing a Rocket Fire hat to shade her eyes as well. It is the only hat I've been able to find large enough to fit over the helmet and stay on. Cute little sun hats just aren't big enough and won't strap around the chin. Doctors are not sure as to why 1p36 children are so sensitive to light. One theory is their inability to produce tears, so their eyes are drier than normal which makes them more sensitive. Alayna doesn't cry often and she has never cried tears.

Alayna did go to get a STARband check last night. I was concerned that it was big and slipping a lot on her head. They tell me it is fitting just the way it is supposed to and that the flatness in the back of her head will take the longest. Since Alayna was older when she was put in it, she may have to wear it longer than expected. She just hasn't had a huge growth spurt that would cause her head to change too drastically. I plan to follow up in 4 weeks and see what their opinion is. Many people have told me that they have a flat head in the back too, but you would never know because hair disguises it. I'm happy with how her head looks right now, but if we still have possible potential for change, I'm not ready to take the STARband off quite yet. She's only been in it for 3 months now. I keep telling myself...patience!

I wanted to share this thought with you before I sign off for the evening. I often reflect about my life and I can honestly say that I knew I wanted children of my own from a very young age. Even when Dana and I planned to marry, we both agreed we wanted children. I remember the topic being brought up by our minister as he reviewed our marriage inventory we had to do for our pre-marriage counseling. I just never quite expected that I would have 4. It still baffles me every now and then. I might have visioned 2 or possibly 3, but if someone would've asked me 15 years ago if I'd have 4 children I would've probably said "are you joking?" However, I know now why I have 4 children. The answer is crystal clear to me. I never knew my own capacity of loving a child until I had Alexis, my first. I fell in love with her and I fell in love with children. This feeling is indescribable until you have your own children. I know parents reading this can easily relate. Yes, they are a challenge at times, but the benefits of watching them grow, watching them learn, and influencing their lives far outweighs the little negatives. Children are blessings.