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

Understanding Cortical Visual Impairment

Dear Savannah,

You kept me very busy this past week with regular therapy, two appointments, school, and we met with the a lady from the Massachusetts Commission for the Blind. Needless to say, we were both exhausted. I am looking forward to spending extra down time with you over Thanksgiving and my time off surrounding the holiday.

One of your appointments involved getting your vision tested. The great news is that your vision has improved over the last year. The not so great news, you have a significant astigmatism and need an even stronger prescription. It is likely that you will always need glasses now. Good thing you look so adorable in your pink and purple glasses.

Cortical visual impairment has been very confusing for me to understand. Here is what I know: CVI is a neurological disorder. The visual pathways and/or the optical lobes have been damaged due to a number of different reasons. This results in visual processing difficulties. I have always been told you have healthy eyes and the nerves are pink. This indicates that your eye exam is normal. Most children with CVI are not totally blind and can increase their vision through vision therapy. With this said, most children with CVI are legally blind. Patience is key for you and others with CVI. Savannah, we allow you more time to visually process an object. Your visual behavior demonstrates "peeking" at this point. We present you with an object, and sometimes you "peek" and turn away. Again, we allow you time to locate the object if you seem interested. Other times, we can present you with an object and it is too overwhelming so you will turn away. Visual processing can be very tiring for you. You "peek" the best when you feel secure and comfortable. You do a great job in your stander  and while on your back for visual activities. Oh, and you just love light.  Everywhere we go, you find the lights. You are a light gazer.  Daddy and I used to joke about "your" lights before the diagnosis. You are very content to stare for no apparent reason. Puzzling for sure but you have shown so much improvement over time and we are very happy with your progress.

Here is a photo you doing a little therapy using a light box. You love to knock the blocks off of the light box. You really are the cutest.

Our other appointment this week were to be fitted for a gait trainer. You looked awesome and even initiated a few steps on your own. Not such a typical step, but reassuring to me that you are just on "Savannah Time".

It is truly amazing  to me that God gave me such an extra important job of raising a child with special needs. You have taught me so much and made me into a better person. I love being your mommy. You bring me pure joy!!

I love you sweet girl.

Love, Mommy