February 1

   Today is February 5, 2014. However, four days ago I wrote you a letter that I will copy for you. My intention was to put it on our blog, however, our internet connection was slow so I wrote an email to myself in bed. I will share it with you today.

Dear Savannah,

   Today is February 1, 2014. This day has a history for us, not always the news I wanted to hear or was necessarily expecting, but we have always been able to cope with February 1.  In 2011, I received news that one of my very best friends, Destiny, had lost her husband Chris to his battle with cancer. Chris was a really great guy and a long time friend of mine. I was very sad. I couldn't imagine how Destiny would cope raising two children alone. You see, they were high school sweethearts. They loved each other for half of their lives. Not to mention, Destiny had lost both her mom and dad a few years prior. I wondered how one amazing sweet girl could endure so much pain. I'll tell you today, she is happy and positive, a truly inspiring woman.

Daddy and I went in for a special doctor appointment, because at that time, you were still growing in my belly. We had scheduled an amniocentesis but declined to follow through. They wanted to do a microarray analysis of your chromosomes and well, we already had one procedure and I really didn't feel the need to risk anything with another. You see, Daddy and I knew we would love you and care for you no matter what any doctors would tell us about your chromosomal makeup. I still had my fears of the unknown but I walked away from this procedure.

On February 1, 2012, you had just turned eight months and I was very concerned about your vision. You never really looked at mommy. Sometimes I felt that you were looking at me, other times I felt like you were looking through me. However, you loved to stare at the lights and would often look up at the mirror while you were in your snuggly bunny swing. I knew you had some vision. I scheduled an appointment with a vision specialist at Children's Hospital and that appointment happened to be on February 1. They ran vision tests I never knew existed starting by looking at stripes and showing you light up toys. Then we moved you into another room where the used a sticky paste to stick electrodes to your head in five different places, maybe seven, as you sat on my lap with the lights off and a screen in front of you. The test is called a visual evoked potential, or VEP. They were measuring the electrical activity of certain areas of your brain in response to sensory input. It was a very long appointment, two hours long. Daddy came to the appointment too. I needed him because that day, you were diagnosed with Cortical Visual Impairment. We were told you were legally blind and my heart broke in a million pieces. They also told us that you would need to wear prescription glasses and at the time, this made me sad too. I had never realized how adorable glasses would look on you.

(The photos are from your first day with glasses. Little did we know at the time, the frames were too big.) 

I always knew your vision was not typical, however, I always thought it was because you have hydrocephalus. You have the most gorgeous eyes and lashes. An outer rim of blue, with beautiful hazel green. Your left eye also has a little brown speckle located at 7 o'clock. Your lashes, thick and long that make almost everyone envious. That day, February 1, 2012, I questioned so many things. How could this beautiful little girl, who already has one health condition, have another? How could your beautiful eyes not work like mine? How will you learn? Will you be made fun of? How hard will the road ahead be?  The two things that hurt the most- Will you ever know what I look like? More important, will you ever know how physically beautiful you are? You my love, are learning to explore your world and you are the most beautiful girl in the whole wide world and I am so thankful for you.

As time has passed these last few years, I couldn't be more proud to call you my daughter. You have come a long way and your vision has improved significantly. Although your vision is not typical, you do watch me move around the room, you love to look at the t.v. and your Ipad. You love toys that light up, but you still prefer music to light, especially a xylophone. Occasionally, you "peek" at me too and this makes me feel wonderful. Your daddy and I are so proud of you. You are an amazing little girl, Savannah Mae.

As far as February 1, 2013. I have no recollection of the day. Today, February 1, 2014, we have electrical issues that went from minor to major. Such a unwanted problem, but minor in the grand scheme of things. We had a great day together, just hanging out. I love you sweat pea.

Love, Mommy

Good Riddance

Dear Savannah,

This past week, we were hit with the flu. All three of us. I can handle being sick, but I hate when you don't feel well. You have been on a roller coaster with the ups and downs during the day. You have never been one to really cry, rather, you just complain. However, when you are sick, you have a very sad little cry.

 I have always worried that I will miss cues when you don't feel well because you are not able to tell me verbally. I feel more confident that I can read your signs, even when you are sick. Everyday, you enjoy kicking and playing and when you are sick, you have zero interest in the things you enjoy, just like all two year olds. I know that you will get sick again, I just hope it is a very long time before you do. I love taking care of you. I will always take care of you.  Now, good riddance flu......

Love, Mommy

A Very Medically Complex Little Girl

Dear Savannah,

 I have spent the evening preparing for our first school transition meeting for you. In preparation, all of your therapists expressed their thoughts and I expressed mine. I know school will be good for you, but I am having some serious separation anxiety. It makes me sad to know that in a few more months, you will no longer be my full-time sidekick or in my full time care, as you will be going to school. It is a feeling of loss of control and it gives me an uneasy feeling. I love my job as your mommy, it's the best job in the world.

Tonight, I put together a transition binder. This hot pink binder contains the most updated medical reports along with all your doctors, addresses, and contact information. I always knew you were medically complex, but twelve doctors and specialists follow you at this point. This list includes your pediatrician, neurologist, neurosurgeon, pedi gi, genetics, communication specialist, two ophthalmologists and a low vision clinic specialist, orthopedics, a PT for aqua therapy, and our local clinic where you meets with a team for out-patient rehab. Wow!! You really are a very medically complex little girl. I think the only one we really don't need, or at least at this point is audiology because you passed a hearing test last spring, as I knew you would. They wanted to sedate you and I promised the woman I would wake you up very early so you would sleep through the test, no sedation involved. We walked away from the appointment and I was very pleased. You are my little rock star!!

She looks like such a big girl here!!

I feel thankful that you are  thriving and I really don't have to worry about your health constantly, even with all your doctors.  In the back of my mind, I constantly worry about your shunt malfunctioning but we have been very lucky thus far (knock on wood). Shortly after you turned one, you tested positive for pertussis which was extremely scary. It was my scariest time with you since we left the nicu, six weeks after your birth. You had such a hard time breathing and you were turning a shade of blue around your mouth. Actually, it reminded me so much of the first seven months of your life. You would aspirate while feeding. Many bottle feedings were tough and even harder was nursing. I was never one to pass you around while feeding. I preferred to keep you safe. Several times, I felt as if I would have to call 911, but never once did it go that far. Many times, I felt as if you would end up with pneumonia but again, we were lucky. Crazy to think about this now because eating is your strength. You might night be able to self-feed, but you eat everything. You do an awesome job chewing and even drink a bit from an open cup. Your chewing is adorable, smacking and all. You are the only one who doesn't get in trouble for smacking or kicking your feet up on the table. There will be a time when this is no longer appropriate, but for now, I think it is really cute. You also eats like a horse! You often eat as much or more than me at dinner. Its amazing you only weigh 22lbs. Where do you put it? You are very petite and perfect.

Tomorrow is a big day, a scary day for this mommy. I plan to address this transition process over the next few months. Pretty soon, you will be turning three. So much change to come our way. I am so not ready to let go... I love you sweet girl!!


Love,  Mommy

Changes in the New Year

Dear Savannah,


It amazes me how time gets away. Somewhere between Thanksgiving and Christmas, our chaotic life zips on by. This week, we are back to our normal, with therapy, school, and work.

Like previous years, we headed to Kansas to be with family for the holidays. It is very hard leaving Daddy behind for the third year, but he insisted and it works for our families. Originally, Daddy planned to come, but with his job change, it wasn't feasible.  It was great to see everyone and nice to be home. Here is a picture of you with your cousins Asher and Oliver. It is very hard to capture a photo of three little ones, but this was my personal favorite out of many :)

This Christmas was a bit different for us. Mimi and Robbie bought a new home so this was my first Christmas I can remember in a different home. However, same neighborhood. I could literally throw a rock and hit my childhood home.  Her new house was cozy and of course, always decorated to my liking. She goes above and beyond with decorations and treats. My two favorites, peanut butter balls and sugar cookies. Yummy. She even bought you a mattress topper so you would have an area to play, since her new house has all hardwood floors. My Grandad, your Great Grandad passed in April, so we were all missing him too. As I sat across the table from my cousin Casey,  I watched as he tackled his ham in the same manner Grandad did, slicing in strips, then into bite size pieces. It made me smile. Speaking of Grandad, it is his birthday today so I am thinking about him a lot today.

Now that we are in 2014, you can expect some big changes for us. You, my love, will start school at age three in order to receive all the therapies you need. As much as Daddy and I try and carry them over, I think this will be beneficial for you.  We actually have a meeting planned for next week to meet with the public school in our district. Oh, how I dread these changes. I am perfectly content with your in home therapies and therapists. You really like them a lot too. Savannah, you will be loved wherever you go because you are happy and have a very sweet personality. I really want to keep you at home with me, forever. This will be a process over the next four months as we put an IEP in place for you and find the most appropriate school. I promise Savannah Mae, that I will advocate for you not just in the next few months, but forever. We will have a very busy spring and I will continue to enjoy you everyday.

I love you!

Love, Mommy

THANKFUL

Dear Savannah,


   Thanksgiving was a week ago today. We spent Thanksgiving with Daddy's family after taking a break the year before. There are so many things I am thankful for and the list grows each year. I know it is a day to be thankful, but I am truly thankful everyday for all the blessings in my life.

 I am most thankful for you, my sweet little Savannah Mae. At two and a half, you are my world, my greatest little blessing. You have taught me to love unconditionally. You have also shown me my true inner strength, how to fight for you and the things I believe in. My little miracle, you have changed me into be a better person and I am so thankful for you. I am also thankful for your health this past year. I am very lucky to call you (sweet and feisty) my little girl.

Mommy is thankful for our family, who has helped shape and mold me into the woman I am today. I have been loved unconditionally by every member of our family, despite mistakes I have made. They have all offered tremendous support to me throughout my life, especially over the past few years. I honestly don't feel as if I would have this inner strength without their love and support. I am so thankful for all.

I am thankful for Daddy, for loving you for you and embracing your uniqueness. Maybe this sounds silly, but you can easily fall in love all over again when you observe a father's love. Daddy is not perfect, nor am I, but we both love you fiercely.

Therapy, something I never imagined would be on my list until I had you and you needed a little, okay, a lot, of extra help. I am so thankful for all of your therapists who are teaching me ways to help you, while loving you and helping you reach your potential. It is going to be very sad when you turn three and these amazing women are no longer a part of our weekly routine. Oh, how I hate big change. With help, I will teach you to SOAR.............

I am thankful for the group at Perkins School for the Blind. For the first time in over two years, I feel like I can actually relate to other parents who are raising children with similar complexity. These parents are wonderful and they too, are doing everything they can to help their children. It truly is a place I wish that we would have involved ourselves in earlier. I was just not ready myself. You love it so much too. All the music and sensory activities. I don't think there is a better place on earth.

I am thankful for so much more. I am thankful that I am healthy and able to care for you daily. I am also extremely thankful that I am happy. Life is complicated, but good.:)

Love, Mommy