Kaylee's entrance into this world marked the commencement of a miraculous journey- a journey of challenges and obstacles, a journey of beauty, grace, and hope. She made her entrance with a small deletion on her 1st chromosome, and so began our family's walk with 1p36 deletion syndrome. Despite a small deletion on her 1st chromosome, Kaylee provided our family with multitude of blessings, trials, and lessons. Her small body arrived with feeding difficulties, acid reflux, infantile spasms a catastrophic seizure disorder, hearing loss, umbilical hernia, blocked tear duct, farsightedness in both eyes, and hospital stays at Driscoll Children's hopsital in Corpus Christi. As always, Kaylee flaunted her feisty spirit and persisted on to complete a two month duration of ACTH therapy a very strong sterioid injections. We are blessed to say Kaylee's seizures finally were brought under control with ACTH therapy, a drug that gave Kaylee the upper hand on epilepsy. But to limit Kaylee's existence and achievements to the confines of a genetic condition would be the ultimate disservice to our little fighter girl and our God. Kaylee is a testament of God's faithfulness and timing. Kaylee is a beacon of light in a shadowy world of hardship. She is an illustration of perfection in her innocence and resiliency. She is a representation of all that is good. She is a daughter and a sister who has been the guide for her family and their faith on a walk into the unknown. She is an expert teacher on living each day and each moment in the present. Though her strides thus far have already been numerous, she undoubtedly has much more to share with this world.
Today, my little lovebug turns one! Where does the time go? It's been a emotional roller coaster with our ups and downs for the past year, however, I would do it again just as long Kaylee remains a happy and healthy little monkey. We are so blessed to have her in our lives. She fills our hearts with happiness and unconditional love. She teaches us everyday the true meaning of patience, compassion, and love. She's our little lovebug and our fighter. We are so proud of our beautiful Kaylee bean. Mommy, daddy & sissy loves you so much!
Accomplishments during the 1st year
Kaylee has come a long way since the beginning of this journey. Our therapists are just amazed with Kaylee's progress. Every time she goes to therapy, they can't believe how fast and strong she's getting. She always seems to surprise them with something new. Like yesterday, she played with a ball and loved it. It was too cute...she would smack the ball and watch it roll away. It was like heaven watching her giggle...she has such a hearty laugh where her whole body shakes with delight. It was so precious to finally watch her play...a dream come true.
At this point, she still needs some assistance with sitting. She can't sit by herself as of yet, but she's on her way. She can extend her torso and sit up straight as long as we are supporting her lower back or her shoulders. She can sit up with support for longer periods of time as long as we are entertaining her. Once we stop entertaining, she would fling herself backwards. Every once in a while, she will sit up without any assistance for 10-15 seconds, then she realizes that she's doing it all by herself and flings herself back. She thinks its funny when we push her forward and she catches herself from falling. She's doing much better of "righting" herself and trying to keep her balance. This will build on her postural muscles and her defense skills. We are praying and hoping that she'll sit by herself at 18 months. I really believe she can accomplish this goal. Her trunk is getting really strong..it's her shoulder girdle that needs to improve in strength. In order for this to happen, Kaylee needs lots of tummy time. She really loves to be on the floor gym activity mat but prefers her back. She use to cry once we place her on her tummy but now she can tolerate it for longer periods. Kaylee is doing awesome with holding herself up with locked arms for at least 2 minutes. Now, you've got to catch her in the right mood, but she enjoys viewing the world from a different perspective. We have to sing the ABC song and she will tolerate anything for longer periods. Its amazing...she would cry throughout the entire therapy session but if you sing the ABC song she calms down and smiles up a storm. So the entire session I have to sing the ABC song to get her to cooperate. I'm sure no one wants to hear my singing, but whatever it takes to see her progress and make her happy. It's these little accomplishments that keeps me going. We will continue to keep you updated on her progress.
Happy 1st birthday, my little lovebug
Happy 1st birthday, my sweet little girl. From the first moment I held you in my arms I adored you so completely. You were so quiet, unsure of the new world that just welcomed you, but when I spoke to you and held your tiny hand, you immediately blinked your little eyes and studied me with complete trust. I felt as if we had known each other for an eternity already and I knew right then that we would guide each other.You are the light of my life. You have shown me so much and taught me with your guidance. Your steady strength is matched only by your loving gentleness and your playful spirit. I love seeing you for the first time each morning and watching your face light up when I say "good morning"....its priceless. I love your toothy trademark smiles and giggles that makes your whole body shake with delight. You are always in such a good mood after waking up so full of life. I love singing songs especially the ABC song and dancing with you and watching you smile with such joy for music. I love your little giggle when we play Peek-a-Boo and other silly games. I love giving you special Mommy snuggles. I just love you. So very, very much, I love you! We are so blessed to have you in our lives.
Happy 1st birthday, my sweet loving Kaylee bean…my little lovebug.
Today, my little lovebug turns one! Where does the time go? It's been a emotional roller coaster with our ups and downs for the past year, however, I would do it again just as long Kaylee remains a happy and healthy little monkey. We are so blessed to have her in our lives. She fills our hearts with happiness and unconditional love. She teaches us everyday the true meaning of patience, compassion, and love. She's our little lovebug and our fighter. We are so proud of our beautiful Kaylee bean. Mommy, daddy & sissy loves you so much!
Accomplishments during the 1st year
Kaylee has come a long way since the beginning of this journey. Our therapists are just amazed with Kaylee's progress. Every time she goes to therapy, they can't believe how fast and strong she's getting. She always seems to surprise them with something new. Like yesterday, she played with a ball and loved it. It was too cute...she would smack the ball and watch it roll away. It was like heaven watching her giggle...she has such a hearty laugh where her whole body shakes with delight. It was so precious to finally watch her play...a dream come true.
At this point, she still needs some assistance with sitting. She can't sit by herself as of yet, but she's on her way. She can extend her torso and sit up straight as long as we are supporting her lower back or her shoulders. She can sit up with support for longer periods of time as long as we are entertaining her. Once we stop entertaining, she would fling herself backwards. Every once in a while, she will sit up without any assistance for 10-15 seconds, then she realizes that she's doing it all by herself and flings herself back. She thinks its funny when we push her forward and she catches herself from falling. She's doing much better of "righting" herself and trying to keep her balance. This will build on her postural muscles and her defense skills. We are praying and hoping that she'll sit by herself at 18 months. I really believe she can accomplish this goal. Her trunk is getting really strong..it's her shoulder girdle that needs to improve in strength. In order for this to happen, Kaylee needs lots of tummy time. She really loves to be on the floor gym activity mat but prefers her back. She use to cry once we place her on her tummy but now she can tolerate it for longer periods. Kaylee is doing awesome with holding herself up with locked arms for at least 2 minutes. Now, you've got to catch her in the right mood, but she enjoys viewing the world from a different perspective. We have to sing the ABC song and she will tolerate anything for longer periods. Its amazing...she would cry throughout the entire therapy session but if you sing the ABC song she calms down and smiles up a storm. So the entire session I have to sing the ABC song to get her to cooperate. I'm sure no one wants to hear my singing, but whatever it takes to see her progress and make her happy. It's these little accomplishments that keeps me going. We will continue to keep you updated on her progress.
Happy 1st birthday, my little lovebug
Happy 1st birthday, my sweet little girl. From the first moment I held you in my arms I adored you so completely. You were so quiet, unsure of the new world that just welcomed you, but when I spoke to you and held your tiny hand, you immediately blinked your little eyes and studied me with complete trust. I felt as if we had known each other for an eternity already and I knew right then that we would guide each other.You are the light of my life. You have shown me so much and taught me with your guidance. Your steady strength is matched only by your loving gentleness and your playful spirit. I love seeing you for the first time each morning and watching your face light up when I say "good morning"....its priceless. I love your toothy trademark smiles and giggles that makes your whole body shake with delight. You are always in such a good mood after waking up so full of life. I love singing songs especially the ABC song and dancing with you and watching you smile with such joy for music. I love your little giggle when we play Peek-a-Boo and other silly games. I love giving you special Mommy snuggles. I just love you. So very, very much, I love you! We are so blessed to have you in our lives.
Happy 1st birthday, my sweet loving Kaylee bean…my little lovebug.
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