Another half-birthday!!

Dear Sweet Savannah,

  I can hardly believe you are 4.5 today. Where does time go? You are my baby girl, my little forever baby, but each year you grow and progress. I could not love you more.

At 4.5, you are stronger than ever!! No longer do you need constant head support while standing in your stander or sitting with support. You are so strong!!

You are now reaching for your bottle and even bringing your hanging toys to your mouth. It is amazing progress and I only wish I could have the strength that you do.

To start off our day, we went to the dentist, one of mommies least favorite things. You were such a trooper. You actually really love the suction which completely surprises me. Today, I also found it promising that as Abi popped popcorn, you enjoyed the sound. You also enjoyed Sam unloading the dishwasher. He lightly tapped a spoon to a wine glass and you smiled:)

So today, I had a huge mommy fail and you adapted, also making me proud. I left your packed dinner  on the table as we left for work. Boo, Mommy. It made for an interesting snack. You pushed away water, (unless through reverse straw drinking) milk, everything!! Until, I added chocolate syrup to the milk, but with the Nosy cup, it was still to thin. It was supposed to be a half birthday celebration that turned into pure frustration.

I wanted to make it right, so I ran to CVS to grab you a bottle, and guess what? They don't carry your brand. So unpicked a sippy/bottle cup with handles and guess what?? Not only did you try and hold it but you drank your milk too. You are a rockstar!!

Sweet Savannah, thank you for being my daughter. Thank you, for teaching me about life. And thank you for making our journey so fulfilling and rewarding. You are simply the sweetest love bug I know.  Happy half birthday!!

Love,
Your adoring mommy!!

A little update...

Dear Savannah,

  It's been a LONG while since I decided to post. Well, graduate school, your sleepless nights have left me to a point beyond exhaustion. I am busy loving you and getting stuff done. You will always be my number one priority. There is not a thing that can take your place.

  A lot has gone on. You are so strong.you are starting to use both hands to bring objects to your mouth. You no longer need head support in your gait trainer. Hippo therapy and Aqua therapy happen every week, and you my sweet girl, still prefer water. You have adjusted to being on a horse but your tiny little figure makes it hard. You protest, and once, you even fell asleep riding. Leave it to you sweet Savannah.

Mommy will update more, I promise. I love you to infinity and beyond!

Live, Mommy

Today, You are Four

Dear Savannah,

I was told, time flies after you have a child. This is so true. I cannot believe you are four years old today. You are such a blessing, to anyone who knows you.

Your smile is infectious. You are more beautiful everyday. You make me so proud to be your mommy.

At four years, you smile a lot. You are becoming more vocal, occasionally vocalizing repetition. You can hold your spoon with assistance and pull your spoon toward yours mouth. You can bear sleight through your legs, and well, you love to bounce. Music is your favorite, anything with the xylophone and you love the princess album, too. You still love Five Guys hamburgers but you also have a love for food. You love all fruits and eat most veggies, too. You love your mommy and daddy and it's obvious. You love school and currently are in a five day program with lots of therapy. Your favorite therapy- aquatic. Savannah, you have gained so much strength and endurance. I absolutely love watching you in the pool. You are happy and make me so proud. You are my biggest blessing.

We celebrated your birthday with a party today. We went to Salem Willows and it was cool and very windy. However, we had a blast. This year, we finally had a ladybug themed party and it was quite awesome. I made your dress, ladybug themed. I also added a lot of love by making ladybug party foods.

I feel sometimes, people feel that I have always loved ladybugs. The fact is, my obsession started with you. Daddy and I were expecting a Junebug and announced my pregnancy this way. In my shirt was a little ladybug. While you were still in my belly, we called you Junebug. You came a few weeks early but forever my little lady you will be.

Thank you, Sweet Savannah Mae, for coming into my world and be the best teacher j will ever have. I love you so much, sweet baby girl. Happy fourth birthday to you.

Love,
Your Very Blessed Mimmy

We Love The Mighty

Dear Savannah,

Things have been crazy. I feel like we go and go and go, well during the school week. In April, you were introduced to yet another specialist, a cardiologist. The echocardiogram and EKG both looked great. However, you also had a 24 hour holter monitor, just to be safe. We are still waiting on those results.

Over the past few months, I have been spending time composing an article for The Mighty. The Mighty does a fabulous job giving special needs parents a place to fit in. They share amazing stories about various disabilities. I'm a huge fan.

Well, just in time for Mothers Day, the published my article. The love and support has been incredible. I just love being your mommy.

http://themighty.com/2015/05/10-unique-challenges-of-being-a-special-needs-parent1/


You are still enjoying swinging and our weather has been gorgeous the last few days. Finally, after the longest winter, evah (as the say here in Boston). Keep making me proud. I love you Sweet Savannah Mae

New Diagnoses

Dear Savannah,

Everyday, I fall more in love with you. You seriously have the best personality, always so happy and smiley. Lately, my description for you is delightful. You are just so delightful. You love when j sing to you, and you love to dance. You have always been musical, and I love this so much.

In March, we received some new diagnoses for you, and for your dad. This past September, we decided to run our final genetic test. You were having a procedure under anesthesia, so I knew a blood draw would not hurt. Daddy and I gave samples of our blood, too. We had a whole exome sequencing test done with only a 30% chance of getting any diagnosis. Well, we received three.

You are currently one of six females in the WORLD with Ogden syndrome. We really don't know enough about this diagnosis because it is so extremely rare, however, I have faith that we will know more in time. I have already connected with two families in the United Srates and I feel thankful to compare all of our precious gems. I am also thankful for the Y chromosome because this same syndrome has been much different for the boys.

We now know you carry a titin gene, a gene that causes cardio myopathy. From my understanding, this can present at any point in your life. It affects the largest protein in the human body and causes weakening of the heart that eventually leads to heart failure. The only real cure  is a heart transplant.  I am extremely nervous. You have a cardio work up later this month so hopefully we will get some more answers. With that said, Daddy has been having heart issues for more than three months. It has been ruled viral but now that we have more information, and the gene comes from Daddy, he is seeing more specialists. I am strongly encouraging him to get another opinion. I pray everyday, that his heart will get back up to normal strength. I pray that it will never become an active gene in your body. I'm overwhelmed to say the least. You and Daddy are my family!

Let's talk about the positives!! You are using a sippy cup more and more. You are still costing us a small fortune in nipples for you Playtex bottle. I am trying my hardest to figure out the next step for a cup, but given your visual impairment, I don't follow the rules here. I would love for you to learn to drink for a straw, but at this point, you don't quite undertand.

Last Sunday was Easter. We spent Easter with good friends this year. It was fun. Easter morning, I woke up to your picture of us in the Boston Globe. My sweet Savannah, this is totally rock star status!! The photo was taken at Perkins School for the Blind at their 5th annual Beeping Egg Hunt. I will have it framed soon:)
 
Everyone you meet, you inspire. You touch the lives of so many. You are amazing and I am a very proud mommy. I love you so much Sweet Savannah Mae.

Love, Mommy

Made With Love

Dear Savannah,

Today is Valentine's Day. I have so much love for you I can barely contain it all. You are perfect, precious, sweet, beautiful, and loved. You represent happy in my life. You make me feel happy. You make me feel needed and loved and I demonstrate the need and love I have for you daily.

I thought today might be the perfect day to share the article that was posted in The Hairbow Company's mini magazine Ruffles that they include with orders. I'm a huge fan of The Hairbow company for a few different reasons. Their products are adorable. The also have fabulous customer service. The also believe in children of all abilities. They not only published my article and barefoot sandal tutorial,  but they are now using models of all abilities in their advertising. It's amazing.

I wrote to the company about Changing the Face of Beauty. I have been following along Katie Driscoll and her partner Steve and their amazing and successful campaign since we met Katie in San Diego for the InfAntino/Step 2 Photo Shoot with the amazing Kelle Hampton. It was an experience I will never forget and really my first steps of inclusion. I gave The Hairbow Company the contact info, and sure enough, The Hairbow Company is one of 37 who have agreed to use models with disabilities in their advertising in 2015. I love seeing all of this take place.

http://www.thehairbowcompany.com/changing-the-face-of-beauty.html#.VN9udZgfXtE.

Her is the article and photo that was posted Ruffles

Made with love:

It all started as a little girl. My family owned a department store. Having a very close relationship with my mother and sister, I always dreamed of having a daughter. The minute I found out I was having a girl, my crafty side jumped for joy. I first chose a shabby floral room decor in aqua and pink. My first real project, I decorated a plain lampshade and completely covered it with miniature rosettes. Similar to what you may see in a Pottery Barn catalog, but budget friendly and made with love. Everything I did, I added a loving touch to her bedroom.

As I organized her room, I daydreamed about all things girly that would fill my daughter's life: dresses, skirts, bows, shoes, ruffles, leggings, in all the most beautiful colors. I couldn't wait to meet my daughter. We would read, craft, have tea parties, play with dolls, paint our toes, dance, sing, cook, and love life. All things I enjoyed with my mother and sister in my childhood. We would be best friends.

It seems that you always make your own plan and you forget, God already has a plan for you. Shortly after birth, Savannah was diagnosed with Hydrocephalus. At just one month old, she had brain surgery. It was extremely scary as a new mom. As my love was growing and my worries too, it never once stopped me from playing "dress-up" with my new, tiny and delicate, baby girl. It started with an obsession with bows and headbands. However, my favorite, barefoot sandals on her tiny little feet. I loved to add sweet girl accessories to her outfits.

Well, at only eight months old, Savannah decided to add her own accessory, pink glasses. Savannah was diagnosed with cortical visual impairment and is considered legally blind. It's a neurological processing visual impairment. It's extremely complex. I never once thought about how much vision impacts our lives, but it is an extreme motivator in all aspects. I do my best to give her all I can, both emotionally and physically.

My bow obsession continued to grow. My crafty bestie started making bows for her daughter and I followed in her footsteps. I loved the idea that I could make a bow to match any outfit, my own creation made with love. Each bow was different in color, size, shape, and style, just like every child.  Bows turned into headbands, barefoot sandals, birthday shirts, Halloween  outfits. Do I sound pretty talented right now? Well, I'm really not. I like easy crafts. Crafting is something I have always had a passion for doing, it just became a new outlet for me. A little mommy time to decompress from the never-ending doctor appointments, therapies, and stressful worries associated with Savannah's condition.

Raising a child with disabilities has truly blessed me. At three years old, she brightens my every day and makes me smile. I feel strongly about giving her all the same privileges I had growing up- experiences of all kinds, a beautiful wardrobe complete with bows, but most importantly, love. Everything I do, I do out of love for her.

My love for Savannah has inspired me to advocate for children with special needs. I want the world to see the beauty in my daughter and how raising a child with special needs is truly a beautiful thing. When people look at her, I want them to notice her beautiful eyes, her thick long lashes, her perfect lips, her rosy cheeks, her gorgeous dark hair, her infectious smile, all things that make her beautiful. My hope is that seeing her photo or reading her story will help others accept all children of all abilities. After all, she is a child like any other who is fiercely loved.

I love you so much!!

Love, Mommy

Endearing- Special Needs parenting

Dear Savannah,

I truly cannot tell you how thankful for you I am each day. Sure, some days are harder than others but I try my best to make you feel so happy and so loved everyday. Your personality is wonderful. Your little giggle from the back in your car seat on my way to school, well, it makes my heart melt.

On our way to School, just before the silly giggle party.

To start the week off, we had two extra days with you at home. We have had so much snow. Last week, 27 inches and this week, another 16. It doesn't surprise me that you love the snow because truly, you just love to be outdoors. You loved your ride around the snow covered streets in our sled. We adapted it by adding Velcro straps from your chair made at Perkins and your old boppy pillow that holds so many close memories of nursing you. Nursing was never easy for you. You have always had a hard time with thin liquids. However, we did share this bond and you enjoyed my milk for almost a full year.

I follow a website full of wonderful articles in Special needs parenting. It's called, The Mighty. Last week, the asked for a one word description of special needs parenting. I commented with the answer endearing. You have all qualities to make you lovable, so extremely lovable. You are endearing and our journey is truly amazing. Easy, far from easy but I feel so lucky God chose me to be your mommy. The Mighty asked for me to share a photo. Sure enough, you were featured in this article. I love sharing our journey. I want to help others understand that a disability is just that. To me, diability should include warrior in the definition. You are not less than anyone else. We all posses unique qualities. I love all of you, I always will.


http://themighty.com/2015/02/this-is-what-it-means-to-be-a-parent-to-a-child-with-special-needs-in-one-word/

More good news, it looks like Daddy's health will improve. They feel that a virus attacked his heart and it will all resolve. Praise the Lord. You are currently healthy  after spending almost the entire month of January with a cold, a nasty one too. My biggest concern at this moment is how are we going to get enough iron into your little body without causing other issues. You are extremely iron deficient. Your diet already consists of greens and hamburgers. You need to supplement 40mg a day. That's a lot. we are already seeing some side effects so I plan to call your pediatrician tomorrow. You also have some strange bumps on your back.

Tomorrow, we have an eye appointment and a land evaluation for Aqua therapy. I'm so excited to start this again. You love the water, like you love outdoors. However, music and mommy still take the cake. Peaceful dreams love bug.

Love,
One Very Lucky Mommy

A very overwhelming week

Dear Savannah,

I have neglected to update my love for you over the past few months. The holidays are crazy. It's shop till you drop and then back up and fly. This year, we celebrated Christmas with Daddy. He came to Kansas with us and you demonstrated your A+ travel skills.  It was so nice to be a family at Christmas.

Exciting news- you are a future flower girl. Tyler and Lindsay presented us with a gift and it was a tee shirt for your duty as Petal Patrol. My heart was so thankful I cried. Lindsay is already an aunt to you but I'm so excited for this upcoming event. Both Tyler and Lindsay love you like crazy. Asher and Oliver are the Ring Security. Lindsay and Tyler's other little love, Ruthie, is also a part of the petal patrol and will be joining (maybe leading) your patrol.

This week has been nuts for us. Daddy took over your position and needed extra care. He hasn't been feeling well for months, and finally after his sugars crashing and my concern for his diabetes, he went to the doctor. He was told he had walking pneumonia, from his chronic cough, until his legs (he has chicken legs like Papa Don) started swelling and he gained 25 lbs in one month. That is when his heart became a concern.

Daddy has had numerous tests including an echo cardiogram which showed us the production rate in his heart is down 50%. Savannah, I cried for you, I cried for me, I cried for your Nana, all in the most screechy, ugly way this week. I was so concerned your Daddy was dying and it hurt me in every way. I couldn't complete a simple task. I walked into the room to get your pajamas and came back with a diaper. I was mentally and physically drained left with the questioning why? Daddy and I both love you for who you are and everything you will be. That will never change. The thought of losing you is a pain I can't describe. Add Daddy to the equation and I feel weak. We need him. We need you. And we need me, too. I'm the glue, the pit bull, (as your dad describes) that makes our family run. I go after the doctors with fierce passion and eminence love.

You are the ultimate reason I fight. You deserve everything I can ever give you. I see that you love and admire Daddy, even if you don't physically see him. You need him, I need him, and we both love him. After several hours in the ER, the week ended with "hopefully" a viral infection that attacked his heart and no real heart issue. You went to a hematologist with no "true" concern but unresolved issues. So all is good. You are sleeping, Daddy is sleeping, and I am trying to digest this week.

January has been rough. Let's make the rest of the year a breeze. I love you my Sweet Savannah Mae!!

Love, Mommy