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