May 14, 2014

Happy 1st Birthday, Paisley Grace

     The day came and went all too fast. Months worth of daydreaming about what décor would do it justice, what venue would be worthy enough, what outfit would be cute enough and how could I ever make it perfect enough to measure up to it's significance? Nothing I imagined seemed to be special enough for her day. Paisley's Birthday is so much more to me than just another birthday, it marks the beginning of a new way of life for me. Up to the moment I had her, everything in my life had been taken for granted. It's like something within me woke up that day and I suddenly had this acute awareness of life and what it meant to be truly grateful. There were things I had been thankful for and I knew what being grateful meant, but I never truly FELT it until I had her. Knowing that my prayers were answered and God really did let me keep's still so amazing to me. I've always been a positive person but now I appreciate things more, I have more compassion, more sympathy, more love...I'm seeing life through a new lens and it's been so refreshing.

     Anyway, back to her birthday. After weeks of thinking about the theme, and knowing that I didn't want to do the average Disney character party or standard party store décor, I settled on butterflies. I thought about the life cycle of a butterfly and how they start out as fuzzy caterpillars... not cute, not pretty at all, and with no resemblance what so ever to the beauties they become once they emerge from the chrysalis as gorgeous, colorful winged creatures. It reminded me so much of Paisley. She emerged a beautiful baby girl, nothing at all like the images from the ultrasounds and nothing at all like they told me she would look. So I began making butterflies... lots and lots of pretty patterned cardstock butterflies. I traced a stencil on the stock paper and cut each one out individually (talk about some major hand cramps!) I began to buy random butterfly stuff online and while I was out shopping. My mother in law was picking up random butterfly décor here and there and my mom (who was just as excited about Paisley's party as I was) was also in full butterfly party mode calling me daily with ideas and thoughts.... and by the time we got everything together to decorate for the big day (which was the day before her party because it actually took us a whole day to decorate) we were drowning in butterflies!!!  It was every bit of the perfection I had dreamed of.  A butterfly garden party fit for my little angel!

    Originally.the party was planned at a venue with botanic gardens and a gorgeous lake, but as the date grew closer, I realized that I didn't want to go through it. I wanted the party to be at my mom's house. The one place that we have all of our family get-togethers, where our family has already made so many memories, I couldn't imagine celebrating this day anywhere else. Nor could I imagine celebrating this day without the family and friends who came. Talk about being blessed! We were surrounded by our families, friends and a few great people who I had become friends with through sharing Paisley's story. It was such a special day. Looking back, I can honestly say it was better than anything I ever imagined, one might even say it was perfect!


Happy 1st Birthday Baby Girl


May 3, 2014

Therapy and Doctors.... Updates

Well, we've followed up with a few of Paisley's doctors in the past couple of months and have some updates. In February, Paisley's neurosurgeon released her for tummy time! (Yay! Even though she HATES it!)  He said that we don't need to worry about the spinal surgery right now. He's thinking more like a few years or possibly six to seven years down the road is when we may need to take that step... it will all depend on how the bones (or lack there of) in her neck develop as she gets bigger. Basically our only issue now is just keeping her safe, making sure her neck is stable and no accidents occur. Even a simple fall can be a severe spinal injury for her. But surgery isn't today or tomorrow, and as far as I'm concerned, that's great news! However, he said that her neck can absolutely NOT be hyper-extended during her cleft palate surgery. He referred us to a wonderful plastic surgeon, to discuss our options for her cleft repair. I must say, the man knew what he was talking about, and clearly had credentials to back his work up... it was documented all over his office walls... plaque after plaque, award after award... quite the achiever. But, somewhere between his explanation of putting Paisley through several operations to get her cleft repaired and his boastful "I have over 30 years of experience" speech (if you've followed Paisley's story, I'm sure you know why that statement doesn't go over too well with me).... I decided he was not the right doctor for us.  I talked to Paisley's ENT about it all and she said the hyper extension was no problem. She felt confident that she could perform the operation in one shot rather than several. Although, doing it her way means that Paisley may be anywhere from 18 months to 2 years old before she has the surgery. As a baby/toddler gets bigger, the palate sides drop in... meaning the gap of her cleft would be narrowed quite a bit, making the operation much easier and less invasive. Sure, she may be 2 and she may be majorly delayed in her speech, but I'm confident that a couple years afterwards, I won't be able to get her quiet! Plus she's enrolled in the Early Intervention program, so she get's weekly occupational therapy and we've just begun weekly speech therapy. Her new speech therapist is going to get us started on sign language as Paisley's first learned language. At first I was scared and a bit overwhelmed by the thought of learning something new, but now I'm looking forward to it. I think Paisley will be happy to have a way to tell me what she wants without having to cry before I figure it out. Not to mention if she does lose any of her hearing, (as hearing loss is prevalent with clefts and various forms of dwarfism) she'll already be ahead by knowing sign language. Luckily, Paisley has no trouble in the feeding department these days so her ST won't need to work with her on feeding.  She is eating 2 to 3 jars of stage 3 baby food a day, baby cookies, puffs and anything she can manage to get off our plates! Funny thing is, she's hardly gained any weight. Her nutritionist even put her on a prescription formula with higher calories because they were concerned about her low weight gain. Hoping she gains a little weight, but not too much for her small, fragile bones. Speaking of her bones, we also visited her orthopedic doctor. Not much to report there.. just basically that she has bowed legs that may require clamps on her growth plates for a while to straighten them out a bit... again, time will tell. 

It's certainly a lot to think about and keep up with and sometimes I feel like I eat, breath and sleep therapy and doctor's appointments, but I'm getting better at juggling it all. (I think) Hahaha   Since my last post, we also celebrated her 1st birthday, I'll be posting a story about that soon.