We're back home!

We are so glad to be back home and at the same time sad that we have to say goodbye to our family and friends. We left for Indianapolis for our 1st 1p36 deletion syndrome conference during July 31-Aug 3rd. We met such incredible families a total of 32 beautiful angels just like Kaylee. It was an amazing week. I didn't expect to feel so much inspiration and joy with everyone there. I guess I didn't know what I would be feeling...but it felt so normal and peaceful...we are complete strangers but I felt the connection and the bond from one family to the next...just like long lost friends...one big family. It felt good to know we weren't alone that other families were facing the same thing. We didn't have to explain everything...we could just express our feelings without judgement. It was awesome knowing that others care for Kaylee too and aren't afraid to interact with her or ask questions. It was definitely like a family reunion! I've learned so much during the conference from different doctors and therapists, but the things I've learned the most came from each other's personal experiences, struggles, and highlights. These personal experiences is something I will always cherish and be grateful that God put these wondeful families in our lives.

Each 1p36 child is so unique and each one of them have their own time frame of when they will reach their next milestone. A certain few of these children appear from the outside, to be flying through life and it's milestones, but many harbor within them, medical issues and impending obstacles, waiting for an opportune time to show their faces. Others fight everyday, every moment, just to be here with families who would move mountains to keep them here with them. One thing they all have in common is that they are all brave mighty fighters. Our children indeed teach us so much about life and how to be grateful for the "little" things. I am forever grateful for my Kaylee "my little miracle." Watching every parent interact with their child was priceless. It made me feel a sense of calmness and joy...a feeling that everything is going to be okay along our journey. Kaylee is only 1 years old but I felt if other parents who has been down our path can do this then we can too. It was very empowering feeling! Overall, our first conference was a unforgettable event that I will always cherish and will definitely look forward to next year. I cannot begin to tell you how much all of these families and their beautiful children have come to mean to us.

If you would like to learn more about our conference, please follow Alayna or Whitney's (Adventures of raising a disable child) blog sites. They did an awesome job recapturing all the events, pictures, and speakers. Thank you everyone for making this conference so special to us. We only captured a few pictures because we left our camera in our room....wish we took more of them.

A beautiful poem...must read!

This is simply beautiful… it’s a must read for families just beginning their Special Needs journey, just like Welcome to Holland.




Welcome to the Club
(from Jesswilson.wordpress.com)


My dear friend,


I am so sorry for your pain.

Don’t worry; no one else sees it, I promise. To the rest of the world, you’re fine. But when you’ve been there, you can’t miss it.

I see it in your eyes. That awful, combustible mixture of heart-wrenching pain and abject fear. God, I remember the fear.

I see it in the weight of that invisible cloak that you wear. I remember the coarseness of its fabric on my skin. Like raw wool in the middle of the desert. You see, it was mine for a time.

I never would have wanted to pass it on to you, my love. I remember so well suffocating under the weight of it, struggling for breath, fighting to throw it off while wrapping myself in its awful warmth, clutching its worn edges for dear life.

I know that it feels like it’s permanent, fixed. But one day down the line you will wake up and find that you’ve left it next to the bed. Eventually, you’ll hang it in the closet. You’ll visit it now and then. You’ll try it on for size. You’ll run your fingers over the fabric and remember when you lived in it, when it was constant, when you couldn’t take it off and leave it behind. But soon days will go by before you wear it again, then weeks, then months.

I know you are staring down what looks to be an impossibly steep learning curve. I know it looks like an immovable mountain. It is not. I know you don’t believe me, but step by step you will climb until suddenly, without warning, you will look down. You will see how far you’ve come. You’ll breathe. I promise. You might even be able to take in the view.

You will doubt yourself. You won’t trust your instincts right away. You will be afraid that you don’t have the capacity to be what your baby will need you to be. Worse, you’ll think that you don’t even know what she needs you to be. You do. I promise. You will.

When you became a mother, you held that tiny baby girl in your arms and in an instant, she filled your heart. You were overwhelmed with love. The kind of love you never expected. The kind that knocks the wind out of you. The kind of all encompassing love that you think couldn’t possibly leave room for any other. But it did.

When your son was born, you looked into those big blue eyes and he crawled right into your heart. He made room for himself, didn’t he? He carved out a space all his own. Suddenly your heart was just bigger. And then again when your youngest was born. She made herself right at home there too.

That’s how it happens. When you need capacity you find it. Your heart expands. It just does. It’s elastic. I promise.

You are so much stronger than you think you are. Trust me. I know you. Hell, I am you.

You will find people in your life who get it and some that don’t. You’ll find some that want to get it and some that never will.

You’ll find a closeness with people you never thought you had anything in common with. You’ll find comfort and relief with friends who speak your new language. You’ll find your village.

You’ll change. One day you’ll notice a shift. You’ll realize that certain words have dropped out of your lexicon. The ones you hadn’t ever thought could be hurtful. Dude, that’s retarded. Never again.

You won’t laugh at vulnerability. You’ll see the world through a lens of sensitivity. The people around you will notice. You’ll change them too.

You will learn to ask for help. You’ll have to. It won’t be easy. You’ll forget sometimes. Life will remind you.

You will read more than you can process. You’ll buy books that you can’t handle reading. You’ll feel guilty that they’re sitting by the side of the bed unopened. Take small bites. The information isn’t going anywhere. Let your heart heal. It will. Breathe. You can.

You will blame yourself. You’ll think you missed signs you should have seen. You’ll be convinced that you should have known. That you should have somehow gotten help earlier. You couldn’t have known. Don’t let yourself live there for long.

You will dig deep and find reserves of energy you never would have believed you had. You will run on adrenaline and crash into dreamless sleep. But you will come through it. I swear, you will.

You will find a rhythm.

You will neglect yourself. You will suddenly realize that you haven’t stopped moving. You’ve missed the gym. You’ve taken care of everyone but you. You will forget how important it is to take care of yourself. Listen to me. If you hear nothing else, hear this. You MUST take care of yourself. You are no use to anyone unless you are healthy. I mean that holistically, my friend. HEALTHY. Nourished, rested, soul-fed. Your children deserve that example.

A friend will force you to take a walk. You will go outside. You will look at the sky. Follow the clouds upward. Try to find where they end. You’ll need that. You’ll need the air. You’ll need to remember how small we all really are.

You will question your faith. Or find it. Maybe both.

You will never, ever take progress for granted. Every milestone met, no matter what the timing, will be cause for celebration. Every baby step will be a quantum leap. You will find the people who understand that. You will revel in their support and love and shared excitement.

You will encounter people who care for your child in ways that restore your faith in humanity. You will cherish the teachers and therapists and caregivers who see past your child’s challenges and who truly understand her strengths. They will feel like family.

You will examine and re-examine every one of your own insecurities.

You will recognize some of your child’s challenges as your own. You will get to know yourself as you get to know your child. You will look to the tools you have used to mitigate your own challenges. You will share them. You will both be better for it.

You will come to understand that there are gifts in all of this. Tolerance, compassion, understanding. Precious, life altering gifts.

You will worry about your other children. You will feel like you’re not giving them enough time. You will find the time. Yes, you will. No, really. You will. You will discover that the time that means something to them is not big. It’s not a trip to the circus. It doesn’t involve planning. It’s free. You will forget the dog and pony shows. Instead, you will find fifteen minutes before bed. You will close the door. You will sit on the floor. You’ll play Barbies with your daughter or Legos with your son (or vice versa). You’ll talk. You’ll listen. You’ll listen some more. You’ll start to believe they’ll be OK. And they will. You will be a better parent for all of it.

You will find the tools that you need. You will take bits and pieces of different theories and practices. You’ll talk to parents and doctors and therapists. You’ll take something from each of them. You’ll even find value in those you don’t agree with at all. Sometimes the most. From the scraps that you gather, you will start to build your child’s quilt. A little of this, a little of that, a lot of love.

You will speak hesitantly at first, but you’ll find your voice. You will come to see that no one knows your child better than you do. You will respectfully listen to the experts in each field. You will value their experience and their knowledge. But you will ultimately remember that while they are the experts in science, you are the expert in your child.

You will think you can’t handle it. You will be wrong.
This is not an easy road, but its rewards are tremendous. It’s joys are the very sweetest of life’s nectar. You will drink them in and taste and smell and feel every last drop of them.

You will be OK.

You will help your sweet girl be far better than OK. You will show her boundless love. She will know that she is accepted and cherished and celebrated for every last morsel of who she is. She will know that her Mama’s there at every turn. She will believe in herself as you believe in her. She will astound you. Over and over and over again. She will teach you far more than you teach her. She will fly.

You will be OK.

And I will be here for you. Every step of the way.


With love,
Jess
Jesswilson.wordpress.com

Kaylee's birthday bash...1 yrs old!

I can't believe my little girl turned one years old yesterday. As usual, she first woke up with her trademark smiles especially after singing the happy birthday song. It was so precious..she loves that song..she just couldn't stop smiling and giggling. After loving on her, we got ready for Kaylee's speech and feeding therapy. I know why on her birthday..she deserves a break right. Well we decided to go since she loves speech therapy and its only a 30 minute session. So, we made into a family affair. Our family of four cheered Kaylee on and sang songs to her. Did I mention she loves the ABC song..she can't get enough of it. It was a great opportunity to include Allison in the mix of things. Allison is such an awesome big sister, very protective and proud of her little sissy. It's so cute to watch Allison interact with Kaylee. They played with uncooked pinto beans together. Kaylee seemed to like the feeling of the beans...she kept grabbing them and mixing them around the container causing a mess. Once again I was amazed that she's touching and exploring with different things. The beans was definitely a good idea...Megan our speech therapist is awesome. Kaylee loves her and we are glad she's part of Kaylee's care team.

Kaylee was a big hit at her Chuck E Cheese birthday party. She loved every minute of it and I was pleased with the turn out. She was getting tired towards the end but its expected with all the activity going on. Kaylee looked adorable in her pink dress...just like a princess. She was a good sport wearing her princess birthday hat...so precious. Kaylee enjoyed everyone's company and loved all the attention. She didn't seem to be overwhelmed with all the lights and noise, actually I think she was intrigued by them. She was very alert taking everything in and watching everyone dance and play. She wasn't to sure about Chuck E Cheese..she just watched him and turned her head away. At least, we got a good picture of them together. I'm so glad we brought her high chair. She just sat there and everyone came to her like in a true princess fashion. I was very hesitant to give her any food since she gagged last time I gave her bread. She transitioned to stage 3 baby food very well. She loves fruits and yogurts pretty much anything sweet...she must take after Grandpa Bruce and her big sissy. I've tried the little stars that dissolves and she tolerate them pretty well. So, we decided to be brave and give Kaylee some pizza. I was so surprised to see her eat the cheese part of the pizza. She chewed it up instead of swallowing it or gagging...I was so amazed. She drank some tea though a straw and tried some birthday cake. It was too cute to see her eyes light up after giving her some frosting...it was priceless. She kept wanting more but I limited the amount to avoid any tummy aches. Kaylee had some cute baby friends....her little boyfriends. The two little boys were Kaylee's age and both of them have Down Syndrome. Brayden and Jack are so precious and loving. They are so happy always laughing and smiling. Kaylee is so lucky to have such wonderful little friends. It was so precious to see them staring at each other...Kaylee loved the attention. Overall, we had a wonderful time and couldn't be more pleased with the turnout. It would be a day that we will never forget and always treasure. We are so blessed to have such loving and supportive family and friends. Thanks again for your prayers and support!

God Bless you all!

Happy 1st birthday Kaylee!

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.

Neurology Update

On June 29th, we went to see Kaylee's neurologist for her 3 month check up. Overall, everything went well. Our neurologist was very impressed with Kaylee's progress. When we first arrived there, they measured and weighed her. She weighed 16lbs and 6 oz and only 3 percent on the growth chart. As far as her height, she was 27.6 inches and 25 % on the growth chart. She's a small little monkey but at least she's growing and gaining weight. Dr. Deline asked many questions pertaining to cognitive and physical developments. She was very surprised of all of her accomplishments. Dr. Deline did mention that she still was low tone but it's much better than being high tone because we can build her muscles up. She went over her labs and said everything looked good. Because it's been 4 1/2 months since Kaylee's last seizure, Dr. Deline wanted to start the weaning process on the Depakene for the next 2 months. She was mentioning that it's nerve racking during the weaning phase because you don't know it the seizure may come back. But also keeping her on Depakene can play havoc on Kaylee's little body causing so many side effects. Well luckily it's a slow wean and if we see anything that resembles a seizure then we can increase the dose and get another EEG done. I'm praying that Kaylee does well during the wean and remains seizure free. These anticonvulsant meds are some nasty stuff and can prevent her from moving forward in her developmental milestones. On the upside, Kaylee's EEG remains NORMAL....Praise GOD! We've been blessed again..God is so good! Thank you everyone for all the prayers and support. Please continue to keep Kaylee in your prayers to remain seizure free for good.

Kaylee's Diagnosis

We have been on an eventful journey with our baby Kaylee’s health these past months. On January 12th, all of problems started with Kaylee and her seizures. At first, it started with a blank stare, limp extremities, unresponsiveness and turning blue. We called the pediatrician on call and were told to go the hospital to be admitted. It was late at night and she already had 3 or 4 seizures. She even had one in front of the doctor and he confirmed they were definitely seizures not acid reflux related.

The following day she had 15 more seizures with some color changes. After completing some tests such as labs, metabolic workup, MRI, and EEG, it was confirmed that Kaylee was diagnosed with complex partial seizures. Later that night we started her with Keppra an anticonvulsant medication. We were discharged the next day and were told to keep a seizure log.

A week went by and Kaylee had another seizure episode where she turned blue again so we rushed her to the ER. We were there for 6 hours and they wanted to send us home with an apnea monitor. We refused to go home unless we had some answers, so they admitted us again so we can at least see our neurologist. The next day we had another EEG done and were devastated with the news.

On January 20th, Kaylee was diagnosed with infantile spasms. It was the worst day of our lives so we thought. The only thing we could do was pray for a miracle with our family. That night we were on our way to renew our faith with the lord.

I’m sure you are wondering what is infantile spasms. It sounds innocent enough, at first. Most people don’t think of epilepsy when they first hear of “Infantile Spasms” because the name is very deceiving. Infantile spasms are considered a catastrophic seizure disorder that is often resistant to medicine therapy, and usually results in mental retardation. Infantile spasms are the only seizure disorder where the seizures occur in clusters. They typically affect children from 4-7 months of age, but can occur earlier or later in life as well. These spasms can look either like an exaggerated startle reflex, where the arms flail outward or a “salam bow” where the trunk flexes forward and the arms and legs draw inward. In Kaylee’s case, they looked like startle reflexes accompanied with facial grimaces.

Infantile spasms usually have a characteristic EEG pattern called Hypsarrhythmia, a chaotic high voltage brain wave occurring all over the brain. The seizures typically occur when waking up or falling asleep. No one knows why. They also occur through out the day, but most often are triggered by drowsiness. The greatest goal with infantile spasms is gaining seizure control which comes differently to every child.

The most common first line of treatment is ACTH steroid therapy. Vigabatrin is popular in other countries, but in not FDA approved in the U.S. yet. The ketogenic diet also sometimes works for seizure control (it’s a high protein, low carb diet for kids). Surgery is considered last resort only if they can locate a focal point.Infantile spasms are mysterious. There are no rules or formulas. Little is known about infantile spasms as to what causes it or what cures it. Basically, it is trial and error, and some kids will never achieve real seizure control. If seizure control is achieved, some children can regain what they’ve lost developmentally due to the seizures…some stay frozen.

The outcome depends largely on what caused the spasms. Some children can function with such an abnormality, other cannot. An added variable is how much brain damage the seizures caused before seizure control is gained. Luckily children’s brains are incredibly resilient, so there is hope that some of that damage can be reversed. One other variable is the anti seizure meds that children have to remain on (usually for up 2 yrs) after seizure control is gained. Those drugs affect development greatly…their side effects include lack of coordination, sedation, hyperactivity, and etc…the list goes on and on.

On February 4th, another bombshell dropped on us. We were on our way to Texas Children’s hospital in Houston when we received a phone call from our neurologist. Kaylee was diagnosed with monosomy 1p36 based on abnormal chromosome study. Within that moment, we felt that all of our dreams for her had been shattered. We had already envisioned what Kaylee would be like before and after she was born. We thought she would be perfect just like her big sister Allison. Obviously after talking to the geneticist, this vision of ours had been completely thrown out the window for a normal child. Kaylee may be labeled with this syndrome but in our eyes she's our perfect miracle and we will treasure every bit of her.

The syndrome Kaylee was born with doesn’t have a common name such as Down Syndrome. It’s designated by the fact that a piece of genetic material is missing from her First Chromosome, the P section (as opposed to the Q section) in a portion known as 36. There are three severities, .1 being the most severe, .2 being in the middle and .3 which is the least severe. Our little one has a .3 deletion which means less genetic material is missing than in the .1 and .2 cases.

What does this all mean? Well, every cell in her body is missing some information crucial to our daughter’s development. Even a small portion of missing genetic info can lead to a surprising number of complications. Once we had a diagnosis for our daughter the doctors recommended we have her brain, heart, kidneys, liver, thyroid, hearing and eyesight all checked out. Children born with this genetic condition have trouble gaining weight, muscle strength, hitting developmental milestones, and learning to speak among other things. Some people with 1P36 deletion never learn to speak more than a few words in their entire lifetimes and some use sign language to communicate. A lot of them have trouble walking, but not all.

Kaylee has mild hearing loss in both ears possibly due to fluid in her ears. At this time, we need to monitor her ears and go from there. She answers to her name so I don't think she has a major issue with hearing. As far as her vision, she is farsighted so she needs to wear strong prescription (+4.5 & 5.0) glasses. Finding glass that fit her is the big issue right now....which we are greatful this is the biggest issue for now. We purchased two pairs of glasses because we didn't know what will work for her. So far the Solo Bambini work the best since they hug her face better. Although we like the way her lavender wire frames look, it doesn't seem to fit right. Unfortunately, she has a flat nasal bridge so they slip off her nose. We just need to invent some adorable, durable, and well fitted glasses that can grow with her face. If anyone have any ideas please don't hesistate to give us some input.

So far 1P36 deletions seem pretty rare too. One in 10,000 children is born with it. To contrast, I think the rate of Down syndrome cases is 1 in 300 births. So there aren’t any growth or height curves to measure against. It has only been discovered in the last 5-7 years due to technology advances. Therefore there are hardly any documented or published cases of this deletion. We have been told that there are only 100 documented cases in the world. Only one official study exists and it was done on 64 kids at Baylor. Most doctors have not even heard of this deletion as it is so newly discovered and many physicians have not had genetic training. Thus, not only will we need to educate friends and family, we will probably have to educate Kaylee’s other doctors as well.

Many of the questions we like answered simply can’t be right now. There’s just not enough data yet. That was one of the toughest things for us. So much was just unknown. Our geneticist gave us a poor prognosis. He told us that extensive therapy wouldn’t do any good. According to him, she would just reach milestones sooner, but will eventually even out with others without so much therapy. In our opinion if a doctor doesn’t have data on the capabilities of a child like Kaylee, then he can’t say “She’ll never be able to do this or that.” Needless to say, we got a second opinion in April. We found a geneticist in Houston, Dr. Bacino. He was the one who studied the 64 kids in 2003. We love him and his positive attitude. We are forever greatful to have a wonderful geneticist and neurologist for Kaylee. We need more doctors like them that give every parent some hope and compassion!

Kaylee’s potential is solely her own. So we have decided that we’ll help her to go as far as she possibly can. We will make sure she reaches her max potential. I think we’ll be amazed how much Kaylee will accomplish in her future…she’s a fighter…she’s our miracle baby.

Well as of February 7th, Kaylee was hospitalized so we could start the ACTH therapy. We gave her first injection that night and she reacted very well so far. At first she received the maximum dose (2 injections a day) 50 units daily for the first two weeks. Then she only received one injection (25 units) for the next two weeks. During her weaning phase we decreased her amt every 5 days until she was completly weaned off. Luckily, on day 10 we have been cluster free….Praise God!

As of Feb 22, we weaned her off to one injection a day. Kaylee experienced a moon face appearance…she had some chipmunk cheeks and gained 1 ½ lbs in one week, high blood pressure, irritability, and an eating machine. So far with lots of prayers, she remained spasm free during the weaning phase. Just to be prepared, our neurologist in Houston ordered Vigabatrin another 1st line treatment for infantile spasms. We hope we don’t have to use it but we have in hand just in case.

We traveled to Dallas the first week of March to see another neurologist who specialized in Vigabatrin. It was a long car ride with a cranky baby, but overall she did well. The visit with the neurologist was a waste of our time. He was very negative and had a horrible bedside manner. The one advise that we will take to heart is to prevent any unnecessary treatments. We need to take in consideration the benefits and risks of every situation whether it's a pet scan or another seizure medicine. I just wish that all doctors take a class for good manners like an etiquete class before they graduate. It's a shame that some parents actually listen to their negative crap. For me, it just motivated myself to prove them wrong. So far it working...Kaylee has been seizure free for 100 days as of May 27th....God is so Good!

We are taking each day - day by day. We know in our hearts Kaylee will be a happy and sweet little girl. She is most definitely a fighter. In the months of Feb-April she hasn’t been her usual self but after she was completely weaned off her developmental skills improve so much. She still continues with all of her therapies - PT, OT, Speech, Nutrition, Feeding therapy, developmental and behavioral. We will continue to test her to make sure all of her organs are functioning properly. We will most likely learn sign language as a family to communicate with her, hopefully she’ll be the one kid who can speak…miracles can happen!

It's been a tough road but I try my best to stay positive. Before Kaylee was diagnosed, I wasn't a religious person. Kaylee brought God and faith in my life which I'm forever greatful. That's how I cope everyday. When things get tough and I feel like giving up I just sit down in a quite place and read prayers out loud from my prayer book. It gives me strength, hope, and peace afterwards. I feel my doubts, worries, and stress just melt away. I know I'm not alone because God is always with me and I continue the rest of the day with feelings of hope and peace. I know that God has great plans for us and that everything will work out. I just have to have some patience and lots of trust in God.

But other days (which are winning out in number) I choose gratitude. I guide Kaylee along and remember that she probably shouldn't be alive - but she is. They 'say' she'll never walk alone or speak - but I believe she will. Kaylee's a happy baby..she smiles alot, great eye contact, and her laughs are contagious. And once I'm done thinking of how lucky we are for these accomplishments...I shift to remember how lucky we are for HER. How many other parents got to start their day with such clarity about life? How many other parents got to begin their day with such a keen understanding of what being a mom or dad is? How many other parents got to know - with such depth - the intimacy with God that is bred from simply being thankful that your child is breathing in and out. I start my day thanking God for Kaylee's very breath. Thanking Him for one more day with my daughter. Knowing that no second of my day will be wasted on thingsthat don't matter.

I pray that my older daughter Allison will grow up also learning the gift of gratitude - and the reality that even with a sick sister- life can be filled with joy.

Kaylee will progress and give us new pleasures each and every day of her life. We can only do our best he help her succeed, and that is exactly what we are going to do. She is our sweet angel sent to us directly from God and we will treat her as such for her entire life.

We know that Allison will be the best big sister. We have no doubt that she will succeed with anything she does. S he’s just so sweet and intelligent. Who knows Allison may be the one to figure out the gene mapping sequence and find reasons why deletions occur.

We love our family and friends so much. We know that this is only the beginning of our long journey. We are blessed to have such a wonderful support group with our yahoo 1p36 family. We can honestly say we are blessed to have such a solid foundation. We couldn’t do it without our friends and family. Thanks for all the prayers and support. We can’t even begin to thank you enough.

Peace be with you, please keep Kaylee in you prayers.

God bless you all,

Beau, Sherry, Allison and Kaylee