It All Started With You

Dear Savannah,

Today was a very long day. My beautiful little alarm (you) woke me at 5am. You were very happy for the first few hours today. Just as I was leaving for work, you were snuggling back into bed for an hour before you needed to leave for school. I called Mrs. Busa and arranged for you to come an hour late so you could sleep a bit longer. Thankfully, that worked for Daddy too.

At pickup, I received my first ever cranky report. You were cranky at school today, normally you are always happy. Today, you vocalized complaints. You continued to be cranky. Thoughts start flooding my head: Are you just tired? Are you teething? Does your belly hurt? Your ears? Could you possibly have a headache? Is it your shunt? It is hard to know with you because you seem to have a high pain tolerance and you are not verbal. One thing is true, I live on a heightened alert because of your hydrocephalus.

Hydrocephalus Facts:
-One to two babies of every 1,000 are born with hydrocephalus, making it as common as Down        
  Syndrome and more common than Spina Bifida or brain tumors
-It is the most common reason for brain surgery in children
-There is no cure. The only effective treatments are surgical
-Hydrocephalus affects infants to elderly and all walks of life from every socioeconomic background
  (Just a few facts listed on the Hydrocephalus Association Website)

Savannah, I will be the first to admit, I had no idea the word hydrocephalus even existed. It took a short time for me to spell hydrocephalus. Many times (less important) medical professionals don't even know how to pronounce hydrocephalus. It all started with you. The word, meaning, understanding, fear, and the reason I walk for a cure. This year we will walk and honor you again.

In my additional efforts to raise money to find a cure, I designed a tee to raise hydrocephalus awareness. This idea stemmed from a fundraiser Kelle Hampton did to honor her daughter by supporting the Ndss and children of all abilities.

 All proceeds of my tee will go to the Hydrocephalus Association in honor of you sweet Savannah Mae.  I love the design.  Be YOUnique, refuse to sink. Always be YOU and never give up this fight.

If you would like to help support our walk, please click here. www.teespring.com/hydrocephalusawareness

Thank you for your support. youth sizes will be available 7/23

Hydrocephalus Walk 2014 Cambridge, Massachusetts

Dear Savannah,

It's the time again. We registered to walk and honor you, our sweet baby hydro lovebug. We will be walking again this September.

It is such a privledge to be your mommy. You have been my greatest teacher in life. I have learned so much in the past three years. Most importantly, unconditional love. I love you for everything that you are, and all that you will be. Thank you, Savannah Mae, for being the biggest blessing in my life. I love you to the moon and back!!

Love, Mommy

http://hawalk.kintera.org/faf/donorReg/mobileDonorPledge.asp?ievent=1098275&lis=1&kntae1098275=497AAC15679A4E4C8FB6283D416B1328&supId=390630377&team=0&scWidth=320&extSiteType=

Please follow the link if you would like to support us!! Any donation is greatly appreciated!! Thanks. Xoxo

Genetic Appointments Suck...

Dear Savannah,

This week, your tummy has been bothering you. You can't win. I feel that either your tummy is distended and hard or you are requiring multiple diaper changes. I changed you seven times on Monday. Tonight, I changed you four and Daddy changed you once. I was terrified to take a tubby with you tonight, however, nothing to report.

Sometimes, it is really hard to know what is going on. You don't seem to express too much discomfort when you are feeling a little yucky. It makes my mind go to all kinds of places. I wish I knew the answers.

Speaking of answers, yesterday, I scheduled an appointment with a geneticist. We have had testing done and even a micro-array, but we still don't have any answers. The appointment is still a few months away, however, I feel that it is important if it can help you. For example, since you were born, your skin tone has been very mottled. I worry that this could be something more, perhaps a heart issue, or it could just be you which is perfectly fine. I just want to be able to help if I can. I would like to rule things out.

This will be our forth geneticist. Personality clashes and a mom who knows what she wants = new doctor. The main problem has been that you are a "subject" to them. You are my precious daughter whom I love more than anything on the planet and its hard to have them look you over and point out things I love about you. I have also been given "papers" about potential things they wanted to test. One doctor handed papers to me and in the first paragraph was a life expectancy. REALLY? This was just something they wanted to test you for, not a diagnosis, and then the appointment ended. I never went back. Our third geneticist was at Boston Children's. I liked him. He seemed more compassionate and I thought he would be the one to help us figure out our little mystery.  I was completely disappointed that I have attempted at least five calls to take the next steps in testing and I have never heard back. I gave up and felt that he didn't deserve to know you. Anyhow, come your next appointment, I hope I like the doctor. She comes from the midwest so I hope she is friendly.

This past Monday, you went on your first field trip. I joined in on the fun. It was a lot of fun. We went to the New England Aquarium. You enjoyed the bright blue lights and the fish tanks. You also really enjoyed the bumpy bus ride. You touched a starfish, gross, I did too. You also touched a turtle.  They were very accommodating to you and your friends who were in the wheelchairs. They put the starfish and turtle into a separate container and brought them over for you to explore. Your teachers are all very nice.

The Wheels on the Bus make me happy!!

Massive Turtle

Fishies

I'm not so sure about this!!

I like turtles:) or you wanted to swim

Mommy is working on a very exciting project. Stay tuned....

On instagram: Junebugsmmma

We love weekends with Daddy

Dear Savannah,

We spent the weekend with Daddy. Once a month, Daddy has the weekend off and it is our favorite weekend of each month. We spent time with friends and family, but mostly, we just enjoyed our time as a family. You had your first "real" babysitter, Arielle, your speech therapist from EI. I knew you would be safe and receive lots of therapy and attention so I felt at ease when we left.

Before you were born, I took up golfing with Daddy. It is my favorite date so we went golfing today. Daddy says that I am a natural, however, I know the only thing I do well, is drive the ball. It is fun and I am very competitive so it pushes me to want to be better.

I am working on a project right now to kickoff fundraising for the hydrocephalus walk. I am very excited. I am also anxiously waiting for another project I wrote for a hair bow company. All my fun new projects stem from my love for you.

Tomorrow, I will be joining you, your teachers, and classmates for your first field trip. We are going to the New England Aquarium. Exciting!!

I love you lovebug!!

Love, Mommy