Wednesday, April 23, 2014

Cutest Little Bunny

Dear Savannah,

This past weekend was Easter. You had a visit from the Easter Bunny who brought you many fun things. We celebrated by going to church and a dinner with family. A few weeks ago, we had a little photo shoot of the cutest bunny ever. Here are a few of my favorites.
Our Easter Card Photo 2014






Easter 2013

I can't believe in one short month, you will be three. Days have gone by way to fast since you entered the world. I wish I could pause our life right now. We only have about three sessions left with each of your therapists and that makes me really sad. I know we will get through it, but I sure do love each and everyone for giving our family love and support over the last three years.

I have started to search for new gift ideas for your birthday. This is always very challenging for me. We have so many great toys for your development of vision and fine motor. I need to make a list for other parents. I feel as if you are starting to out grow some, but not all, of your infant toys and you need a bit more of a challenge. I love how much you are reaching and activating some of your toys now. You are becoming more and more accurate, peeking, and then finding your toys. I love watching your development. It is nothing I have ever know before you were born.

Speaking of development, we received our Upsee in the mail last Thursday. Savannah, you walked with me and it was amazing. I have watched the video countless times and I'm so happy that the Upsee enables you to be upright, taking steps, and learn a gait pattern. It's amazing! We also danced, different from me holding you while I was dancing. It felt amazing. You seemed to enjoy dancing too. We will master walking at some point. I think you will be the girl who walks before you crawl because your upper body is much weaker than your lower body. You make your own rules. I have learned this about you by now. I wait patiently cheering you on.

Yesterday, you had OT with Holly. She thinks you are doing wonderful. You did some nice reaching and Holly showed me a new way to encourage you to use your left hand more while standing. It is not as much fun for you because you are positioned at an angle so you can only reach your toys with your left hand. It's not going to be your favorite. You also demonstrated the strength in your legs as you went from sitting on the floor, to a standing position, a very impressive skill. You love standing. Just six months ago, you had very little interest.

Our life is changing a lot right now. A lot of uncertainty about schooling, but we will figure it out. One thing that will always remain the same, I will always be your mommy. I love you sweet Savannah Mae.

Love, Mommy
By the way, this picture was on wonderbaby.org for a shirt giveaway
from the stitchwench.com. Pretty impressive Savannah Mae!

Tuesday, April 15, 2014

My Little Boston Bean

Dear Savannah,

As I watched the Boston Marathon Day of Remebrance program, a lot went through my mind. You enjoyed the Boston's Children Chorus and then you crashed. I remember last year. I was working and we walked to get ice cream while the bombing was taking place. Thank goodness we don't go into the city on busy days. It actually would make me much more nervous. I can't imagine how the victims feel now in a crowded public event.

One speech that touched my heart was about community. Just the message of community and what if only every community would bond the way the world has supported Boston this past year, and New York after 911? What if? What if the world supported our differences as people? Would you have an easier road ahead.? Would your peers learn to accept your differences and love you like I do? We'll, I'm pretty sure there is not a person alive who loves you the way I do.

Speaking of community, we supported a local family just two days ago. Hundreds of people gathered in Salem to pray for a little baby named Mason who has cancer. We all wore orange. We tied a Mason Strong ballon to your stroller. It was amazing to see the support and this all came together within a few days. Just like Boston Strong, he is Mason Strong.

On the news program today, they talked a lot about the victims and their resilience, dedication, courage, and strength.. The victims have encouraged the world so much over the past year. Savannah, it reminded me so much of you. Sometimes, I wonder how you do it. I look at you with pure amazement. You work hard, you hardly complain, and you just keep pushing. Your feisty side pays off. You are mommy's little fighter. You really are an amazing gift. I am one lucky mommy. I love you my little Boston Bean.

Love, Mommy

Thursday, April 3, 2014

A Vision Statement for Your IEP

Dear Savannah,

Today, we had your very first IEP meeting. I have been feeling very stressed for the past few months about this day. My anxiety has been very high anticipating this day and the outcome of this meeting. As your mommy, I knew I would be the best advocate I know how to be. I also knew that I would probably cry. I was successful at both. We do not have an outcome at this point but I do feel that we had a very successful meeting and it is highly likely that you will be placed out of district without the big fight I thought we would have. The reason that this is so important to me is because your teachers need to be trained to understand your cortical visual impairment, as it is very complex, and as stated today, more of a neurological impairment.

You attended the meeting behaving like the angel that you are. At one point, Keri, your PT went on the mat and played with you before you fell asleep. You loved the lights in the classroom, so much that the lights occupied your visual attention. That sounds great, right? Well, we want you to look at more than lights so this is a main argument we have that this school cannot provide you with the education you need.

Twenty people attended this meeting including you, the largest IEP that any of your own therapists have attended. Daddy was the only male. I know females dominate the education field, but even more so in the early years. I was asked to prepare a "Vision Statement". When I handed it over as we were discussing our vision for you, well, I was told a statement, not the page I had prepared. Immediately, I spoke up and stated that you deserve a page, not a small statement.


My Hopes and Dreams For Savannah Mae:
   It strikes me as odd that I am writing a "vision" statement about my visually impaired daughter, Savannah.  I guess unfair that she is unable to actually visualize what I want for her because she has such limited vision at this point. So for this purpose, I will call it my hopes and dreams instead.
MY HOPES and DREAMS:
   First and foremost, Savannah is a happy little girl who will be turning three in a few more months. I love that she is happy, so happy, yet sweet and feisty at the same time.  She is a very pleasant little girl and more than anything in life, I want her to remain as happy as she is today. As her mother, I know I will do everything I can to make her feel happy, always. She is a joy to everyone that meets her and I have never loved anything the way I love her.
   Her health is also very important to me, although, I know this is really out of my control. When she is healthy, she is happy and I couldn't ask for more. I pray that she remains so healthy and resilient.
   My dreams for Savannah are big and I feel as she will accomplish them if she is guided through therapy and school with love and patience. I know she is going to need the right  environment  to learn the best that she can. I know she requires a lot at this point, but my hopes and dreams are that over time, life gets a little easier for her. That she doesn't have to work as hard at lifting her head, using her core, her hands, her speech, her legs, and maybe most importantly, using her vision. I dream that she can see just how beautiful she is. I want so badly for Savannah’s face to light up when I walk in the room. Not because she can hear me, but because she can see me. I know this is an accomplishable goal with extensive vision therapy. I know her low vision and processing issues can make it very hard to be motivated to look, reach, turn, examine, talk, and walk. With the right tools and therapists, I know she will do all of the above, even if it is not considered to be at the same level as her peers. My goal is not for her to be at the same level with her peers, but rather to be able to learn some independent life skills and live a happy fulfilling life. 
   My dream is that she will be accepted by everyone and her disabilities don't sway the decision of another child. She is more alike than different, she just needs more time and molding to help her reach her potential. She has already taught so many people just how truly wonderful differences can be. This is a dream I have for not only Savannah, but all of those living with a disability.
   My hope is that she will have friends, real friends, who understand her with and without disabilities. Playdates, how great would that be? I know as her mom, I will feel awesome when she is accepted and included in things that are fun for her. There is so much we can all learn about someone with disabilities and I hope she will be a great example and that her typical peers will be compassionate and accepting.
   I hope she will learn to sit independently in the near future, that she will walk and talk and run. I look forward to her sitting strong and playing in a new position. I really look forward to her calling me momma. 
   With all that said, I want her to have a happy, fulfilling life. I just want her to always be happy, feel accepted, and feel loved. I want her to be pushed hard, (but not too hard) to keep her moving in the right direction. I'm perfectly happy with her "inchstones" vs milestones. Savannah is on her own timeline and she has a lot to show the world.

You are worth everything and more than a small page about what my hopes and dreams are for you. I love you for who you are my sweet Savannah Mae!! You are my super hero!!
My Superpowers are Hydrocephalus and Cortical Visual Impairment

Love, Mommy


Tuesday, April 1, 2014

A trip to Kansas

Dear Savannah,

Well, my little one, life has been very busy. Since my last letter to you we have been very busy, with appointments, therapies, and more importantly, travel to Kansas. We have had a very busy schedule but it was very nice to get away and relax and see the family I miss daily.

I needed the break, you probably did too. I have been so stressed about your upcoming IEP meeting that I needed to check in with my reality, Kansas and family. I am only stressed because I want the best for you but I feel a lot more relaxed after our mini vacation. The weather has still been so cold here. It was nice to go to the park in flip flops and a t-shirt. I even let you ditch your afo's and socks, on the warmest day we were away. I'm sure you loved it.

While we were away, we went to the park, even Kiddy Land  on a few occasions. We played with your cousins, Asher and Ollie a lot. Asher loves his sweet girl. He called you his sweet little princess while you were on the floor playing with your new toys for Mimi's house. Mimi purchased a new swing that we all enjoyed. It was awesome.  We ate donuts, sugar cookies, and sno-cones too. It's fun to go to Kansas .We also had a play date with the Harley boys. Catch them now pretty girl because these boys are very sweet.
My Sweet Little Princess

The Amazing Trio


I Love My Peeps 


Ollie in the Teepee

Mimi with he littlest loves

When we arrived to Kansas, we went to visit Uncle T. He gave mommy a nice adjustment. I didn't know what to expect but he is the reason I will look into chiropractors for both you and me.  It was amazing. I truly think that we could both benefit.

Since we have been back, you now have a gait trainer and new afo's. It made me cry to watch you take your first few steps, it also made you cry. I have strong faith you will cruise in your walker very soon. I think the warmer weather may serve as a great motivator. Sweet dreams little one. I love you to the moon and back!!!