Happy 2nd Birthday sweet angel!

Dear Kaylee,

It’s unbelievable that my precious little girl is turning two-years-old today — on so many levels. It literally seems like yesterday that you came into this world and gently taught me what truly is wonderful and special and good and extraordinary; taught me what really matters in life. I could never come up with enough words to adequately describe my feelings towards you, but here are a few things that I want you to know I love:

I love watching you sleep and feeling you so close to me.

I love being the first to see those beautiful eyes greet each and every single cherished morning when you wake up. So happy. So innocent. So Kaylee.

I love your gentle determination and am so proud of your fighting spirit.

I love how unbelievably forgiving you are.

I love the deeply loving and distinctly admiring way that you look at your sister Allison — always smiling & giggling every time without fail.

I love that your trust for both daddy and me has absolutely no end.

I love your sweet, loving smile.

I love your hearty laugh...it's contagious.

I love blowing on your tummy and you anticipating it with a giggle.

I love your night night dance when you try to put yourself to bed.

I love that you know exactly what you want and will definitely let me know even if you can't sign or talk yet.

I love your independence and your persistence.

I love watching you eat and seeing your expressions when you try something new.

I love holding your hand, kissing and loving on you, and singing you the same repetitive out of tune songs.

I love that you want us to snuggle with you. I hope you never stop.

I love how you like to touch my face and try to grab my mouth.

I love your imperfect toes and your perfect tiny nose.

I love your thirst for life and adventure and the look of surprise and excitement on your face when you get so excited.

I love that you think mommy is so funny.

More than anything, anything, ANYTHING else in the entire world, I LOVE being your Mommy — the luckiest mommy in the world — and am so unbelievably proud of the little inspiring girl that you have become.

Happy 2nd birthday sweetheart. Mommy & daddy are so proud of you. You are our world…

Updates.....

Wow. I do believe that this marks my longest mini hiatus. Life has been crazy busy...but a good kind of busy. So much to catch everyone up on. So much so, that I hardly know where to begin. Instead of making this a marathon post, saturated with all the events of the past 6 months, I will hit a few high points for now.

So far, Kaylee has been seizure free from last Feb 09. We are truly blessed that she's been medically healthy...Praise God. Kaylee is a happy loving little girl. We are so proud of her and all of her accomplishments...some big and some small. She's able to sit longer periods at a time sometimes over 30-45 min. depending if she's motivated by one of her toys. Kaylee can feed herself finger foods such as cheetos, banana puffs, really anything she can grab. She's been very alert to her surroundings...very curious to see what's going on. We love how she's been making awesome eye contact with strangers and even tries to interact with them. She's always loved looking at immediate family but now she's been exploring out of her box. We've been trying the brush technique 2 days ago and we've seen some great results. She doesn't mind when we brush her extremities...still a little sensitive to her feet but much better since we first started. She's been weight bearing more on her feet without the need for her shoes which is a hugh accomplishment for us. She's been sustain grasping her toys for longer periods now and will tolerate certain sounds like crinkling of foil. I can't even imagine what she'll do in another week of brush therapy. It's been time consuming...brushing every 2-3 hrs but well worth it.

We added a couple more therapies per week to her already hectic schedule. She now receives music therapy and cranial sacral therapy. Music therapy is one of her favorites. She loves anything that lights up or makes sounds. She always heads for the drums and piano. She thinks it's funny when she bangs on things...she loves repetition. Of course, I have to sing to her when she starts getting cranky but if it motivates her then I'll do whatever it takes...even if I have to sing row, row your boat 50 million times. Kaylee still is not motivated to crawl at this time, but I know she's getting close. She has all the pieces down, but it's the matter of putting it all together. Her shoulder girdle & upper body is still a little weak but so much better now. Kaylee's been tolerating weight bearing on her legs okay. She experiences tight hips & knees, but responds very well to a technique called total motion release known as TMR. TMR has worked wonders on Kaylee's body. Every time she feels tight in certain areas to her body we can usually release the restrictions by balancing her body out using TMR techniques....awesome stuff. For more info on TMR, you can check out the website on http://www.totalmotionrelease.com/

We were blessed to take a trip to Disney World during spring break. We flew to Orlando and met up with Chad and his family (Beau's brother) from Fort Myers, FL. We had an awesome time together...wish we lived closer because it was so heartbreaking when we had to say goodbye. Allison still talks about that trip all the time. It was an expensive trip but I know she'll remember that trip forever...special bonding time with her cousins. Kaylee did awesome traveling...she's our experienced little traveler. We've been lucky to spend a lot of family time together during our camping expeditions. We spent some quality time in Brazos Bend south of Houston, Guadalupe state park, Goliad state park, and Goose Island state park. We bought a bike trailer for our girls during our trip to Brazos Bend ..that was a great investment. I think we rode around the trails for 2 hrs one day just enjoying the scenery. Kaylee enjoyed the ride so much that she cried every time we stopped. She must of loved the bouncing around motion because she fell asleep during our excursion. Camping has been an awesome time for us. We don't do much but just rest & relax. Beau claims he sleeps so much better in our camper then at home. It really is relaxing and peaceful!

Here are some pictures of our trips these last few months. We hope you enjoy them! Feeling exhausted to no end. Heading to bed. More to blog about later, including our dodgeball tournament on Saturday, birthday party at Chuck E Cheese, and our upcoming trip to the 1p36 deletion conference in Utah next weekend.

Almost a year ago! Counting my blessings...

I can't believe its been 1 year since Kaylee's 1st seizure. I remember very little of that day. As much as we knew that seizures could be part of Kaylee's future, nothing prepared me, any of us, for her neurologist words on January 19th, which were,"I'm sorry to say this but Kaylee's EEG shows modified hypsarrthymia also known as infantile spasms." I remember looking at Beau and just losing it. Beau at the time wasn't familiar with infantile spams, but he knew it was serious enough for me to cry. The rest of it seemed just like a blur which I think is a blessing in some ways. Our memories are double edged swords however. They rob us eventually of the things we wish so desperately to remember forever and ever but often, during some of the most difficult moments in our lives, usually the darkest, those times too begin to fade.

I am in complete awe of our sweet baby girl I see before me today. Kaylee has amazed me from day one and that has not ceased, for one second, to this day. I am in awe of my beautiful Allison and how she has grown and evolved and endured all that has been asked of her and all that she had to process and channel and deal with. I am in awe of my loving husband Beau and how he just got done what needed to get done, to provide for his family, remaining positive and optimistic, all the while caring so tenderly, nearly each and every evening for his youngest little love.

Seizures were such a huge and devastating part of our life at one time. Actually, Kaylee's life. It was, after all, her little brain that was being jostled relentlessly. We all however, lived and breathed Kaylee's seizures. Or rather we mostly held our breath. Our lives were consumed with counting seizures and watching for seizures. Allison even would yell out,"seizure", when she was having a cluster. How sad is that? Our lives were once dictated by guessing,"Do we go up on dosage? Do we go down on dosage? Is the dosage EVEN working? I shared with someone awhile back, that Kaylee's seizure time was a truly dark, dark time. In many ways darker then the 1p36 deletion diagnosis. At least with her 1p36 diagnosis we knew exactly what we are dealing with and what we need to do next. Not true for Epilepsy. The doctors are guessing just as much as we are and nothing is more discouraging as to see your neurologist face looking defeated because she is not particularly optimistic on the next medication choice. Seizures came out of the clear blue for Kaylee. One day turning blue and nonresponsive and the next week an EEG report that read like a really, really bad horror movie script.

Kaylee's type of seizure disorder, Infantile Spasms, is referred to as a catastrophic form of Epilepsy. Not what parents wants to hear. It is often very difficult to bring under control and most often results to severe developmental delays. We watched our once smiley little girl, leave us. Leave us like, nobody was home, leave us. No smiles. No expressions what so ever. She stopped eating well. She just STOPPED. Our journey from and through Infantile Spasms was relatively brief, compared to some, but it was still dark and agonizing. In the end, after a month of trying, Kaylee found her miracle in a drug called ACTH that little held hope would work. That was a gift. Kaylee has found seizure freedom for almost a year now, February 17th to be exact.

I say that I don't take Kaylee's seizure freedom for granted but do I? Have I become too comfortable and confident that she remains seizure free on a very low dose of medication? Lord I hope not. Kaylee has an amazing doctor at Driscoll children's hospital here in Corpus Christi, Dr. Deline. She has been a source of encouragement and has rejoiced alongside us in Kaylee's progress.

During this past year, our family has witnessed the most incredible outpouring of love and support from our family, friends, and complete strangers. More kindness and compassion and unselfishness, then we could have ever, ever imagined. I have, along the way, also met the most magical children and families that I would have never had the opportunity and the privilege of meeting had it not been for this journey. I have watched with immense joy and hope, the children and families who are accomplishing many wonderful milestones, some small or big, but equally awesome accomplishments. I have also watched with equal pain and sorrow, the faces of families whose children would not make it. A year ago I would never, in my wildest dreams, have imagined having to watch parents and siblings and loved ones, say goodbye and journey forward in this life, without their precious children. That part of the journey I will never be able to reconcile.

A year ago, our family found strength in each other, as we united, with one goal and one goal only and that was to see this innocent child through the unimaginable. And here we are a year later all of us all together taken to the edge once more and brought back because of the will and spirit of a tiny precious baby girl. Kaylee Ashlyn and her presence and entry into our family is what we have been waiting for all of our lives. She has changed us and shaped us and empowered us to be the people we are today. We give thanks to God for leading us, sheltering us and covering us in His amazing grace so we can proclaim once more, how incredibly blessed and how humbly thankful we are. No one knows what tomorrow will bring or the day after that, or what awaits us around the next corner but what I do know, is that for today, in this moment, we rejoice.

Happy New Years 2010!

We bid farewell to this past year with a mix of emotions. We enter into 2010 with much of the same. Uncertain of what lies ahead for any of us but equally confident that the faith by which we have relied on thus far, to see us through, will continue to be our ultimate guide. We look to God tonight and thank Him for His unwavering, unconditional love, even and most especially when we have questioned yet another obstacle placed before our littlest love. We are indeed blessed and look to 2010 with great hope. With that hope and steadfast faith, we will no doubt continue to find our way.

Our family wishes you all a very,very Happy New Year, abundant in love and laughter and overflowing with health and happiness. I have never been big on resolutions but thought I'd leave you with this. My wish is that I might live a little closer to these beautiful, simple words.

"People are often unreasonable, illogical, and self-centered; Forgive them anyway. If you are kind, People may accuse you of selfish, ulterior motives; Be kind anyway. If you are successful, you will win some false friends and some true enemies; Succeed anyway. If you are honest and frank, People may cheat you; Be honest and frank anyway. What you spend years building, someone could destroy overnight; Build anyway. If you find serenity and happiness, They may be jealous; Be happy anyway. The good you do today, people will often forget tomorrow; Do good anyway. Give the world the best you have, and it may never be enough; Give the world the best you've got anyway. You see, in the final analysis, it is between you and God; It was never between you and them anyway."

Mother Teresa~

Christmas Bliss....Serenity!

I'm so blessed....

I'm so blessed to have such a wonderful family...precious kids and a loving husband. My husband Beau left me speechless this Christmas. He always goes above and beyond every Christmas and loves surprising me. We always tell each other not to exchange gifts but somehow that never happens. He always seems to amaze me and I always feel that I didn't do enough. Well this Christmas was very special...maybe because of all the ups and downs we faced over the year with our Kaylee bean. I opened my gift, an amazing, amazing diamond cross necklace. I saw it and was a goner from there. Well, Beau didn't stop there...he also wrote me a letter that took my breath away. The love poured onto this letter just gave me goose bumps. I would love to share it with everyone.

To my wife,

To my love...I am forever grateful to you for what you do everyday. You have given me two wonderful children that I would not change for the world. I have grown into a better man because of your dedication and commitment to our family. I am forever in debt to you for what you have done for Kaylee. You and only you saved our little girl! This is what you were put on earth for...saving Kaylee. You saved her from her horrible seizures due to your sense of details and dedication. Your demand of treatment and thereapy have been the success we see today, and that is why I am in debt to you.

You have been instrumental in the growth of our beautiful little Allison. She's so smart, beautiful, and caring...I look at her and see you. You truly are my rock! Everything is meant for a reason. God had a plan for us from day one. For us to meet and have the children we have today because he knew we were the right parents for the job. Still waiting to see what job he has for me though:) I know I'm not the easiest person to deal with but I just handle things differently.

I will be there for you through thick and thin. I will do whatever it takes to provide for this family to ensure we have a bright and loving future. What I gave you today is a small token of my thanks to you for being such a wonderful wife and mother. I love and need you more than you will ever know:) Wear this cross to give you the strength you need and to help you remember what is really important.

Love you today, tomorrow, and always

Beau


Do you see why I lost it?? My gifts finished with another present that revolves around the most important thing in my life, in fact they are my life: my family. I am blessed. Of course I already knew this and it wasn't because of the material gifts I received but rather the love that was expressed so unselfishly to me, by my children. By my husband. Our Christmas was amazing. Simply amazing. But my true gift, the ultimate gift is the gift of these beautiful souls that surround me. They are simply amazing. Not a moment went by on that day, especially in this very moment,that I wasn't reminded how blessed my life is.

A visit from Santa Claus

On Christmas eve, Santa claus came to visit grandmama's house. This Christmas was amazing because we spent it with our family. We are blessed to have such a big wonderful family. This Christmas was very special because we have a new addition to our family....beautiful Isabella Rose. She's 2 months old and is perfect in every way. She's our miracle baby along with our Kaylee bean. We are blessed to have two miracle babies in one room. They both seem to remain amazingly healthy. I think that guardian angels are watching extra vigilantly over them.

It was amazing to see the looks on Allison and Landen's face when they saw Santa Claus at the door. Allison couldn't stop staring and the first thing she did was give him a big hug. She looked very shy with her sheepish smile. She couldn't take her eyes off of him....it was as if she just witnessed a true miracle. Landen on the other hand wasn't to sure about Santa. He too just stared at him with his big blue eyes. At first, he didn't want anything to do with him, but once Santa mentioned toys his eyes lit up. We finally got Landen to sit on Santa's lap with help of bribery. It's amazing what candy and toys can do to a child. Allison was tickled to death when she got a cross from Santa.

A few days ago, we went to the mall to take some pictures with Santa. Allison picked out a cross from the treasure chest at church. At first, she wanted to give the cross to Kaylee which was very thoughtful of her. But as soon we arrive at the mall, Allison changed her mind and decided to give the cross to Santa. She figured that Santa would put her on the top list now. Santa at the mall was very shocked to get the cross. He kept hugging Allison and couldn't stop thanking her. If we looked closely at Santa, I think he had tears in his eyes. It was an awesome moment. Beau and I looked at each other and then to our children...we were overcome with emotion. Hard not to be when you have kids like ours. How the two of us managed to produce these remarkable children is beyond me.

It was a special moment to see Santa holding Isabella. It was so precious...Isabella is so beautiful just like a little angel. It makes you feel so blessed and thankful for these little moments. I just wanted to shout out to God and thank him for letting us witness this moment....it was truly magical. It makes you realize whats important in life. What Christmas is really about....FAMILY and our faith..being surrounded by your loved ones makes all your fears and worries just melt away. When we are all united we can move mountains.

Needless to say, the children really enjoyed Santa. I think our five year old Allison was pondering on Santa's voice. She kept saying wow that Santa sounds so much like uncle Matt. It took a lot of convincing that uncle Matt was at work and it couldn't be him. At the end, she clutched her cross and smiled everytime she looked at it. She kept saying, "mommy he did remember. He got me one too." I have to thank grandmama for that awesome touch. Grandmama has good connections with Santa.

The season for giving....The true acts of kindness.

Once again we are blessed to have such a thoughful family. Our 1p36 deletion support and awareness nonprofit organiaton launched a new website at http://www.1p36dsa.org/ You can support our organization by clicking on our website and donating to our mission of 1p36. Our mission states, "Helping individuals affected by chromosome 1p36 abnormalities overcome the obstacles they face to be able to lead healthy, happy and productive lives. We do this by providing support and education to their families and increasing awareness of chromosome 1p36 abnormalities in the public and medical community."

I am very proud of our nonprofit organization and website. I'm also very excitied that we officially got our 501c status. We are now able to get big named sponsors to support our mission and hopefully this will bring more public awareness worldwide.

A big heartfelt thanks to uncle Tim, aunt Beth, and cousin Erin in Seattle for donating $100.00 dollars to our 1p36 nonprofit organization. Your donation was the best Christmas present ever. We are honored and humbled by your support of our cause to raise much needed awareness of 1p36 deletion syndrome. Once again, thanks for your support. It means the world to us. We missed you guys at Christmas. It wasn't complete without the clan from Seattle and the Culvahouse clan from Florida. Hopefully next Christmas we can all be together...wouldn't that be a true miracle!

We also got an incredible heartfelt gift from Jim & Terri Philomeno (also known as Popeye & Grandmama) for donating $100.00 in honor of us to buy goats for third world countries. We have joined in the amazing miracle that helps children and families in need. These goats nourish hungry children and families with healthy milk, cheese, and yogurt. Goats also give a much-needed income boost by providing offspring and extra dairy products for sale at the market. Thank you Popeye and grandmama for making a difference in someone's life. This is what Christmas is all about...making miracles for others. What an awesome gift...helping a familiy make all their dreams come true.

You can click on www.worldvisiongifts.org/goat and help make a difference in a child's life. Its a great website. You can buy animals, water wells, help with education, hunger...the list goes on. What an awesome feeling to help others in need especially children!

Overall, we had a wonderful Christmas. Its amazing how fast the year goes by. Its been a rough year for us but we are now stronger and better people because of it. I wouldn't change a moment of it. It made us to who we are today....a better united family. We will continue our journey to 2010 with so much love and compassion....a journey of challenges and obstacles, a journey of beauty, grace, and hope.

For now I trust in Kaylee. In God. I circle back to what I have known for a very long time and that is: I never had the control to begin with.

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.
Amen.

--Reinhold Niebuh