July 3, 2011
June 24, 2011
For the past two months we have been in and out of the Cleveland Clinic. Today they decided to go in and fix a stricture at the top of Kyra's Colon. The surgeons were reluctant to go in because the bowel can be damaged easily, it's fragile, with no guarantees that a new stricture wouldn't form from the scar tissue that is left over from the operation.
Two years ago on this very date Kyra had her first surgery. Through the skillful hands of Dr. DiFiore he was able to attach 5 separate pieces of small intestines together. One piece was about a cm long. He managed to accumulate 9 cms of intestine. We were told that a child needed 70 cms to live.
Kyra's Neonatologist Dr. D'Netto never let our family lose hope. There were many dark hours throughout the first years of Kyra's life, but Dr. D'Netto was a beacon of light especially for my wife. Kyra's guardian angel walks on Earth. She goes by Marita. I would be amiss if I didn't mention the skilled work of Kyras gastrointestinal team led by Dr. Radhakrishnan. They formulated a plan for Kyra and it's surpassing my family's dreams.
To make a very long story short. After today's surgery the surgeons informed us Kyra has 70 cms of small intestine and 30 cms of large. I asked the surgeon if you didn't know Kyra's back story, what would be your prognosis. He said "a normal life". I never thought I would ever hear those words considering Kyra. I am a blessed man.
Now anyone who knows my family. Kyra has had many ups and downs. I'm always cautious talking about the future for Kyra because we are reminded daily there are no guarantees for a tomorrow. I now have "hope" for a tomorrow.
October 2, 2010
Her favorite thing to do lately is to go outside. She loves her walks and enjoys feeding the neighbor's horse. Kyra gets a bit of a grizzly voice when she calls for them. Well actually orders them to come over is more like it. "Come here Maggie! Come here Oliver!" Kyra still believes she controls the world. She says their names so clear and will inform you that they like apples, carrots and "graaase"
Kyra also enjoys greeting the contractors working next door on our new home. She yells out "Hi" each time I take her out. They usually cannot hear her from where we are but never the less Kyra's determined spirit keeps her yelling until one of them notices her. Daddy spent several LONG days digging a basement for our family. Digging a basement on the "rock" is a somewhat impossible task but he did it. Now we will have a greater peace of mind knowing we can get Kyra into a safe environment in the event of severe weather. There were far too many times this past summer when I worried about what we could do to keep her safe with little options. Now we know that we can seek shelter and not compromise her health in the process.
Kyra also learned about the equipment Daddy used. One day her nurse took Kyra outside and as they walked by the bobcat machine Kyra announced, "Bobcat" Later that day the nurse wrote in her notes the development Kyra was making: "Kyra said "horse" when she saw the horse, "digging" when she say Daddy digging in the ground and "bobcat" when she saw the bobcat." I'd love to know what on earth the person reviewing the notes thought about Kyra seeing a bobcat. Or better yet, why wasn't there a concerned phone call made?!
We still go to the Clinic every two weeks for IVIG. Kyra enjoys her visits with the staff there. She is especially fond of one of the nurses, Dan. The last two times we have pulled into the parking garage, without a word from us, she announced "Coming Dan!" She greets people as we walk onto the elevator and two weeks ago before I had the chance, Kyra thanked the gentleman that made sure to hold open the doors so we could make it on the elevator. She is a polite little one and so appreciative of the attention given to her.
For many of you this blog and our stories are all you know of Kyra. Most of you have not even physically scene this little miracle yet you know her and her beautiful spirit. So often I have expressed my sincere gratitude for everyone associated with Kyra's blessing, the nurses, doctors, family, friends, everyone. Daily I recognize how much we have and how far we have come together. The moments and the memories our family gets to create and cherish are more than we thought possible. I could never say enough about each one of you and how your continued support lifts us, drives us and blesses us. I pray each of you recieves the same blessed gifts as this:
A week ago I was sitting across the room from where Kyra was playing. She was content, leafing thru her books and making the noises for each animal on the page. The next thing I knew she had made her way over to me, reached her hands up, hugged my legs, sweetly said "I love you mommy" then lifted her head up with puckered lips. Upon recieving her kiss she simply turned and scooted back over to her books. Nothing more. You can only imagine the tears that came flowing ... .what an amazing gift when you recieve love.
July 1, 2010
Kyra has a car now. What a great way to distract Kyra from her therapy sessions. Little does she know that this activity helps build up her muscles and will provide her the skills for walking. She is able to push the car up and down the driveway now. She moves very slowly but she is determined. Too cute... she gets into the car and says "I'm coming" over and over about 12 times before she makes it to you. I applaud her determination and focus.
Ok so if I haven't said it before, Kyra is remarkable. I am in awe of what she is able to understand. Two nights ago, Kyra emptied out the toys of her "purse" ( a clear bag with a long handle.) I watched as she struggled to pull it up to her shoulder. Once in place, she scooted across the floor heading toward the hallway and yelled "Bye Mom" I asked her where she was going and she sweetly replied "work" rounded the corner and stopped at the wall that still displays her "artwork." She put down her purse and carried out a display of coloring on the wall. Moments later, she picked up the purse, pulled it to her shoulder and proceeded to come back into the room "Hi Mom." Now how amazing is that. Kyra has no concept of where we go each day. Her knowledge of the world consists of our home, our neighborhood and the Cleveland Clinic. But apparently the girl pays attention to more things than I know. I always tell the nurse each day where I am heading, to work or to the store. At those moments Kyra is usually playing or browsing thru her books and only seems to interrupt her activity to say "bye, bye" and blow me kisses. Who knew she was paying attention the whole time.
Other moments that have taken place over the last few months.... Kyra's vocabulary is expanding. She is putting sentences together. I heard her call for her "sis-sis" last night. When Mikahla came running down the hall Kyra asked her "want to play with me?" They have a hand-jive song called "double-double" they enjoy singing together.... At Kyra's last Cleveland Clinic visit Kyra said her doctor's names. Ok, Radhakrishnan is hard - she calls him "Krishnan" but she says Marita (Dr. Marita D'Netto) as clear as can be.... Kyra is also working on her nursing/doctoring skills too... she has a Doctors Kit and checks the temperature, heart rate and blood pressure of her teddy bear 3-4 times a day. She always reports he is "35" degrees and doing "good." Check out this photo, she wanted a cap and mask too.
April 14, 2010
It hardly seems possible that it has been two years already. This tough little girl has blossomed in so many ways. She has become "Miss Manners" using her "pease" and "t-ank you" All day today she was saying "t-ank" you to everyone for all her gifts. And early this morning she tossed Nurse Becky a toy and told Becky "welcome." Kyra got a surpise this morning with a BIG, BIG birthday cake from Becky's husband, Jason. He made this amazing Mickey Mouse Club House 3-D Cake. Thank you Jason and Becky. We managed to get some icing on her lips and she announced "Mickey!" She loves her Mickey Mouse.
This week has been a bit emotional for me. My heart has been filled with happiness and excitement reaching this milestone. Early this week I had an opportunity to visit with Dr. Marita D'Netto and speak with a few nurses from the NICU. I have also become more aware of the friendships (actually family relationships) created with our home health nurses, Becky, Barb, Kris and Diane. All of these individuals have forever changed our lives. So today marks a birthday for Kyra but it also marks a "win" for all those who have been a part of her progress. I can only hope that each one of you understand that they are so much apart of our family smiles, not just today but everyday. Everything you have done, everything you have given, and everything your dedicate yourself to MATTERS!
Our friends and family have been remarkable and a great source of strength. Someone once asked me "How do you do it?" My answer was "anyone can do this just as long as they have OUR family and OUR friends behind them." We have an amazing support system.
Today I recieved a beautiful bouquet of flowers from my sister with a card that read: "Miracles happen for those who have the strength to believe." So true, Thanks Cher!
Excited to see Mikahla & Kaden roll the ball to her
Birthday Girl blowing out her candles
She DID IT!!!
April 4, 2010
January 24, 2010
I have realized I have not added photos of Kyra in a while. She is growing so fast and learning so many new things. She is our little greeter. Anytime we walk in the room, we hear this sweet little girl say "hi." and if not acknowledged quickly enough you hear a very loud and stern "HI!" She makes her presence known. Here are some big girl photos.
FEEDING HER BABY
BABY HAS A G-TUBE TOO. THANKS NURSE BECKY!