A new year for Hayden!

Happy Birthday Hayden Grace!!!!

March 22, 2010... a new beginning for Hayden!

Not only is today her 2nd birthday, it is the beginning of a whole new adventure for Hayden. Today, Hayden celebrated her first day being gluten (which includes all wheat, oat, barley), casein (dairy - milk, cheese, and yogurt), peanut and soy-free. We celebrated with tasty GF brownies! Yum! They were a hit all around the McCurdy household.

Hayden had blood testing that determined sensitivity to 96 common foods. On a scale of 0-3 (3 being most sensitive), Hayden tested a 3 for gluten, wheat, rye, peanut, cow's milk, cheese, and yogurt. She rated a 2 for lamb and soybean and a 1 for barley, beef, coconut, egg whites, baker's yeast, green peas malt, and mustard.

Why are we testing for food sensitivity and dramatically altering her diet? I read a book called "Disconnected Kids", written by the creator of a program philosophy called "Brain Balance". The thought process is that certain people have challenges fully digesting nutrients in the stomach. These foods, not fully broken down into usable nutrients, enter the bloodstream and travel to the brain. They cloud the brain like opiate drugs, causing the individual a myrad of negative effects, including lack of concentration, comprehension, processing and verbal expression. The gluten free/casein free diet has proven quite successful with many autistic, ADHD, Asperger's and other sensory processing disordered children.

While still not fully accepted by the medical community, we are fortunate to have an amazing pediatrician on our team who thinks outside the traditional box. She, like us, is learning with Hayden. We decided per her recommendation and my interest in testing Hayden for her sensitivities, esp. recognizing that Hayden's condition, albeit different, shares many similar characteristics of autism. Needless to say, the results of the bloodwork excited me. Finally I feel like we are being proactive rather than reactive with her condition.

Hayden was quite ill last week, suffering a head cold that developed into bronchitis and sinusitis. She didn't sleep for days because of her struggles with breathing and not feeling well. Her fever climbed to 104.7 by Friday evening and although the congestion finally loosened up a bit on Sunday, blood drained from her nose all day yesterday and today. The positive in the past week is that Hayden began eliminating milk products from her diet before we officially began the diet (milk and congestion are not the best of friends).

The amazing observation with this cease of milk (casein): Hayden, for the first time we can remember, tried to really play with Hailey in the bathtub last night, focusing on 1 toy rather than grasping at whatever was around. Later, she truly played with mommy, holding eye contact and laughing with me. Today, even more improvements - when Aunt Kelly came over and walked into the living room to say Hi Hayden, Hayden looked right at her and gave her the biggest smile! Even Aunt Kelly was amazed! My favorite moment, one which I will cherish forever, is when Hayden crawled over to me while I lay on the floor, rested her head on my shoulder and closed her eyes. She opened them, smiled at me, then closed them again before taking a nap. The sweet gesture of my little birthday angel made my heart melt even more for my little girl.

Is it worth the 2 hours I spent wandering the aisles of the store today, reading every label of each item I picked up? If I can continue to have moments like today, I will read every label of every item in every aisle of every store I enter. Do I believe this new diet will cure her? -no, but do I think it will help bring Hayden out of her little world and be more a part of ours? - I have to believe it with my whole heart.

So, happy birthday my little Angel! I can not wait to see what we learn this year!

"Life's not about waiting for the storm to pass... it's about learning to dance in the rain." - Vivian Greene

...or in my case, learning to run in the rain. For many who have known me over the years, they know I am a runner. I am a better than average runner. I don't run races just to finish. I almost crave the pain when the legs and lungs scream out, begging to quit, but the mind tells them to shut up and dig deeper. Yes, over the years I have won many races, set course records, and sacrificed many a potentially fun Friday night to wake up before daybreak the following morning, just to experience that pain again. Why, you might ask? Was it because I loved it so much like a sweet addiction that I couldn't stop? In a word, no.

For years I ran because I could. I knew I had a talent, yet did not know it's purpose. I would run repeats around a lonely track in the scorching summer heat, freezing rain and even sleet, hating every step, yet pushing through it all. I learned that racing wasn't about finishing first, it was more about how I controlled myself mentally while out there - did I stay positive or did I try to talk myself into quitting around the next turn? With some people, they use their career to define who they are. With me, it was my running. I watched what I ate and drank to help me perform, viewing my body as a machine which God gave me. I, however, continued to question why God would give me this talent. What was I supposed to do with it?

I continued to run over the years, even through pregnancies, miscarriages and a slew of ovarian cysts that would sideline working out for months. Running became a part of me. When I could not run for any length of time, I became like a caged animal, needing to release pent up energy, but having no way to escape. Often my husband would send me out the door telling me not to return until I ran it out of my system - lovingly, of course, for he knows me better than even I know myself.

In 2008, our world forever changed with the birth of our second daughter, Hayden Grace. We ventured into unfamiliar territory that most can not even begin to relate to. Physically and emotionally David and I were drained after night upon sleepless night with our little girl. We visited almost ever speciality doctor in the books searching for why our precious baby was so sick, refluxy, and not developing like a "normal" baby should. During this time, I would drag myself out for a morning run, even if the night before we were at urgent care with our little one for an ear infection, fever, congestion or pneumonia.

In the Christian song, "While I'm Waiting", John Waller sings the line "I'll be running the race even while I wait". I would replay that verse in my head when I ran like a mantra. My body and mind were exhausted from all we had been going through, but my soul stirred with the lyrics. I connected with God as my feet moved over the trails. Some days I would run through tears, others through anger and frustration, but I continued to run. I craved my time alone with my Heavenly Father on the peaceful stillness of the trails. I felt as if even the deer knew my reason for being out there, for they didn't flinch when I passed by. I finally began "to dance".

I still wonder why God gave me this talent. Perhaps one day it will be revealed to me, just like a revelation about why He made our sweet Hayden as she is. Today, though, I will dance (or literally, go for a run in the rain).

Look what I am into now...

Mischief, Mischief, and More Mischief....

New Beginnings!

Soooo much has happened over the past 6 months - we have moved back to Peachtree City, celebrated the holidays, weathered a couple of snowstorms, and grown by leaps and bounds. Both Hailey and Hayden are 2 very different little girls since our move. Hailey, full of confidence, smiled for pictures, gave me a kiss and a wave and was off to her new preschool without a second thought. She begs to add extra days of lunch bunch so she can stay and play with her friends. She sings, dances, and makes the goofiest faces to show off her silly side. I love this fun-loving 4 year old!

Hayden never ceases to amaze us with her growth since our mid-December move. Within days of moving to our new home, she hopped up on all 4's and crawled across the room (previously, her means of locomotion was an awkward commando crawl). She also figured out all transition movements - laying to all 4's to sitting to standing to squatting down to pick things up. Then, she mastered the one step up from the family room to the kitchen without help or prompting in a day. We had been working and working on these feats for months in our former home with her PT, without any avail. Since the move, things have just seemed to "click". Most recent Hayden is figuring out how to cruise along the side of the coffee table (usually a pacifier on the other side makes perfect bait!) It is so much fun to watch Hayden get into mischief! What others take for granted or consider a source of frustration, we embrace!

Never did Dave or I think this move would be as wonderful for our family as it has revealed to be. We put our faith and trust in God through a very challenging year last year, knowing He had a bigger vision for us than we had for ourselves. I still ask "why us" and "why Hayden" often, but as He has shown us even in these past few months, there is a reason and a plan. We continue to pray for a miracle every day. Hailey's favorite stories of the Bible, which she asks us to read every night, all involve Jesus's miracles. I truly believe God is performing miracles in my girls every day and will continue to in the days and years to come. We also pray for the doctors and researchers out there and believe in all our hearts that they are so close to figuring it all out. These sweet angels will one day talk and play with all the other children but hopefully stay as happy and smiling as God created them to be. Perfect in every way!

Love heals all wounds

Last week Hailey, my 4 year old, fell while riding her scooter around the driveway. The fall resulted in a large round scrape on her knee. She cried and cried. Not even mommy's hugs while cleaning out the grit that got trapped in the fresh wound could make the pain go away. Upon reflection, I realized Hailey's scrape was similar to the pain my heart had been feeling. When I first was told of Hayden's condition, my mind went in to "fix it" mode, just as it had when Hailey fell on the driveway. It was only days later as the reality set in that I couldn't put a band-aide on Hayden and make her better did I really feel the wound. It was a raw, burning pain that would not go away. I could not eat or sleep without feeling its presence. The more I dug in to clean out my heart's wound, the more it burned. I tried reading about other people's experiences with their Angel's, learning how they lived and coped. What I began to see were people who have given up their lives for the condition. It sounded like a horrible fate, esp. for a family as active and full of life as we have always been. Dreams we had for our girls had been shattered in an instant after hearing the results found in one drop of blood.

I struggled with why God would create such a condition and make little, innocent children suffer for it. If He had something He wanted Dave and me to learn, I wish He would have made us hurt in order to grow, not our child. I kept thinking of how He let His only Son suffer so much for all His other children so that one day we could be reunited. It must have been the most raw, burning pain to see your own child beaten and crucified in such an inhumane way. Yet, He let it happen to bring us all closer to Him. What, then, was His purpose in creating Hayden this way with an inability to speak or even walk one day without losing balance? Why did He create such a condition where children can't even get reprive in sleep and then allow them to have seizures which are hard to control even with medication as they get older?

The week following her diagnosis, I turned away, not only from God, but also from Hayden. When I interacted with Hayden or tried to practice her physical therapy, I would break down in tears. I could not separate the condition from this precious little baby, my child. Thank God for my amazing husband who took over. He cared for Hayden, prayed for her and for me as I struggled to come accept our future as a family.

A dear friend of mine told me 3 wise thoughts. First: unsubscribe to the blogs and chat rooms of others with this condition. The families who are truly living with Angel's are not sitting on their computers wallowing in sorrows all day long. Second: we have been so fortunate to discover Hayden's condition this early on. Most children do not get diagnosed until years later. Knowing is half the battle. Now we can thoroughly focus on all forms of early intervention. There is no telling her true potential since we can begin therapies so early on. Third: acknowledge the condition, but focus on the possibilities - what she can bring to our family and the hope for a cure. It isn't merely a dream. It will be a reality.

Hailey and I went to visit my sister for the weekend so Hailey could play with her cousin, Amber, and I could come to terms with the thoughts flying through my head. Dave brought Hayden down for the day that Sunday. As he arrived Hailey raced to the car, jumped in, gave Hayden a huge hug and kiss and said "I love you Hayden Grace!" Hayden lit up when she saw her sister and heard her excited voice. It was at that moment I saw God's love through my children's eyes. The sun began to shine brighter than it had all week and I felt a peace I had been missing.

God didn't put a band-aide on my pain and make it all better, but He did give me a kiss and hug and let me know that in time, my wound will heal. My girls don't feel this pain in their innocent, young lives. They only feel sweet, pure love. How much I have to learn from them.

Hayden Grace, our little angel

My husband, David, and I have been blessed to have 2 very special little girls. Hailey Marie is a vibrant, active, athletic 4 year old who loves riding bikes, scooters, playing soccer and tennis in the backyard with her daddy, and turning into a monkey on her playset. She adores every baby doll she has adopted and believes with her whole heart that you can never have too many babies or strollers (she currently has 3 - 2 umbrella strollers and 1 double jogger for her dolls). Her mind is always active, albeit a wee bit headstrong, she has a love for learning and being challenged. Hayden Grace, her 16 month old sister, is a McCurdy through and through - looking just like her daddy and many of her baby pictures could be mistaken for her cousin, Maggie (Dave's brother's little girl) - who is always smiling and affectionate! Although we have raised our girls in the same home, I am amazed at how different Hailey and Hayden are - from their eating and sleeping habits to Hayden's contentment with sitting in a carseat or stroller (Hailey used to scream until my ears rang), yet adversity to a hiking backpack (which Hailey, of course, loved being in for hours). Even the toys they gravitate to are opposites. So much for my sociological philosophy - maybe children aren't a product of their environment after all! One thing is certain though, they both adore each other with such a pure and innocent love. Watching them interact fills my heart to overflowing with gratitude for all God has given us.

Here is a little update on Hayden… her neurologist ordered chromosomal blood work and we received the results late last week. She has a genetic condition called “Angelman’s Syndrome” – it is a rare condition, located on the maternal 15th chromosome. Reading up on it explains much of our stress and grief related to her over the past 16 mos for she exhibits almost all character traits to a degree, everything from her reflux, chronic ear and sinus infections, lack of sleeping through the night, balance issues, not talking, overly happy demeanor, and eating/swallowing issues. The largest heartbreak for us is that many children with this condition never walk or talk and develop seizures as they grow. She may never say “Mommy, I love you” but she already showers us with love and kisses and you can read a thousand words in her deep blue eyes. The greatest blessing with them is that they really are living angels. They have the happiest disposition, always smiling or laughing. They do not judge others or feel the pains of prejudice. Other than what they can’t do, they look “normal”. They are very loving and can understand the world around them, just have trouble communicating. We struggled for the first 48 hours with the news, but now truly believe God put her in our lives because He knew we need her as much as she needs us. With my PT background, Dave’s sincere, compassionate personality, Hailey’s love and devotion to babies, and even Tucker, our dog’s, loyalty to his girls (he never leaves their side) – Hayden couldn’t be in a better home. Plus, Dave and I have never been ones to back down from a challenge or adversity, anyone who knows us can attest to that. Isn’t that genetically predisposed as well???

We have been reading up on all the current research related to Angelman’s. It is truly fascinating. The main clinical finding is that nothing is mutated or destroyed in the body, just a missing component found on the maternal 15th chromosome. Already, they have been able to reinstate the “missing piece to the chromosomal puzzle” on mice and the AS symptoms or deficits were completed restored. The thought process is that they should be able to do this in humans as well. Another area of research is trying to “turn on” the dormant male 15th chromosome counterpart bio-chemically (since it is perfectly healthy and just sitting there doing nothing in the body). They are exploring literally 14,000 different chemicals that are already FDA approved to see if any of them “turn the green light on” on the other side. All of this makes me extremely hopeful that there is a cure and it really is just a matter of short time to make it click. This past weekend, the Angelman Foundation had a convention in Orlando where they announced the formation of the “Angelman Syndrome Research Institute”. Rather than wait for government funding or a pharmaceutical company to cover the overhead for treatment options (the mindset is that they are so close to a cure, they don’t need to get lost in “treatment of the disorder” mindset), they are privately funding the research since the technology and knowledge is already there. We are definitely going to continue to study and learn as much as we can about this.

Hayden is so high functioning already (plus, having parents as she has, she will not have the ability to slack off with her therapy). For example, she began sitting independently at 6 ½ months. I have read where many angels don’t even have the muscle tone and balance to sit until they are 3 years old. We truly feel blessed and that this isn’t tragic, just different from the picture we envisioned for our girls. At least they won’t be yelling and fighting like many siblings do!

I plan to add posts related to Hayden's medical history, current struggles as well as victories we celebrate, and updates on what I learn about Angelman's Syndrome, research and the cure. I hope our experiences, love, and faith help others who may be struggling to find answers as well. I am sure there will be days where tears will blur my vision while I type, but others where God's spirit will guide my words. Please share our blog with friends and family. Through knowledge, faith and prayer, all things are possible. God bless.