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!!
Sweet Savannah Mae is a journal of letters to my daughter, Savannah Mae, about her journey through life with Cortical Visual Impairment, Hydrocephalus, and more importantly, LOVE.
Monday, November 23, 2015
Friday, November 20, 2015
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
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
Saturday, May 23, 2015
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
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
Tuesday, May 5, 2015
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
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
Saturday, April 11, 2015
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
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
Saturday, February 14, 2015
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
Love, Mommy
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
I love you so much!!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.
Love, Mommy
Wednesday, February 4, 2015
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.
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
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
Friday, January 16, 2015
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
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
Sunday, November 23, 2014
Happy Half Birthday, Sweet Pea!!!
Dear Savannah,
We have been on this journey for three and a half years today. I am so beyond blessed to be your mother and I love every second of it. You are my tiniest teacher and never in a million years would I have imagined that someone so tiny, could teach me so much.
At three in a half years, you are still working on sitting, but you are stronger and stronger every day. You roll, and roll, and roll. I feel exhausted as if I'm chasing a toddler running wild but instead, I'm constantly make sure you are not rolling into tables and tv stands and that you are safe. You do seem to be aware when you get close to something, which is great and I am sure as you get older, you will be even more aware. You are lifting your head with ease and keeping it up longer than ever. Sometimes Daddy and I wish we could wrap you in bubble wrap, or at least your precious little noggin.
I honestly have no idea what you are seeing, other than light. I know that you are motivated by food. Your spoon, you hold it longer than anything and you turn your head in the direction of food. Is this smell, or sight? Only you know, however you are your fathers daughter and he is very proud of your eating:)
You are bearing more and more weight on your tiny little feet. You still wear 0-12 month socks. You also are in 18-24 month clothes and a few 2t. Your are tiny and petite and perfect in every way. You are 23 pounds but I'm not concerned because your diet is very healthy.
You have been going to school for five months and you are thriving. I'm happy to get a chance to observe you in your classroom as much as I can. You may not be the youngest, but currently, you are the adored "baby" in the school and might I add, best dressed too. You're a cool kid!!
I love everything about you. Your tangled, but gorgeous dark brown hair. Your smile, it is so infectious and takes over your body. Your eyelashes are enough to create the word jealousy. Your eyes, I'm envious of the hazel green color, the brown speck at 7 o'clock in your left eye, and the way your eyes sparkle. I love your dimple, your rosy cheeks, your little hands and feet and well, everything.
I love the way you reach for me as you fall asleep. It melts my heart. I also completely adore how you put your finger in your mouth as if you are thinking, just as you drift off into a deep sleep. You turn your wrist inward and even with all my efforts to fix this, it seems comfortable for you. You look so sweet and angelic as you sleep.
You love music, especially my crazy songs that often include your name, mommy, daddy, and anything we might be doing at that moment. You smile mostly when I kiss your cheek. Sometimes you turn your head as if it is a game. You also love to have your feet kicked up, especially when you are eating. You use us as a footstool and I think it is so cute. You love fruit of all kinds and yougurt too. Five guys hamburgers are still a favorite. You also like sweets. You must get that from Daddy ;)
Your favorite toys are your tap bells, xylophone, musical garden, Neptune turtle, bumblebee, mozart music cube and all musical apps on the iPad. Did I mention you love music? Your favorite toy this year- your tap bells:) (Thank you Mimi)
You currently wear pink and lavender glasses. We have a vision appointment in a few weeks and once we know more, we might add a third pair. You don't mind your glasses, however you have a few strong dilikes. You hate having your hair brushed, or your teeth. You dislike your reflux pill but strongly detest Benadryl (given only when sick). You are so smart. You hold it in your mouth, and just when we think you swallowed, it pours out of mouth. You also really dislike having you nose wiped.
In all my years and all my experience with children, I have never know such delight when you wake from a cat nap. You are happy, and you know happy, and that is all that matters in life. You are my littlest inspiration and my favorite thing in life. You are amazing.
Savannah Mae, thank you!! Thank you for being you and teaching me. Thank you for inspiring me as your mommy and as your number one advocate. I will always be here for you to help you and protect you along the way. Parenting you, a child with special needs, is a gift, the greatest, most precious gift. Maybe I was hesitant in the beginning that this journey would have true happiness and meaning, but now I can say with confidence, you have made me a better person and I can't thank you enough. Happy 1/2 birthday to my favorite little girl. I love you so much!!
Love, Mommy
We have been on this journey for three and a half years today. I am so beyond blessed to be your mother and I love every second of it. You are my tiniest teacher and never in a million years would I have imagined that someone so tiny, could teach me so much.
At three in a half years, you are still working on sitting, but you are stronger and stronger every day. You roll, and roll, and roll. I feel exhausted as if I'm chasing a toddler running wild but instead, I'm constantly make sure you are not rolling into tables and tv stands and that you are safe. You do seem to be aware when you get close to something, which is great and I am sure as you get older, you will be even more aware. You are lifting your head with ease and keeping it up longer than ever. Sometimes Daddy and I wish we could wrap you in bubble wrap, or at least your precious little noggin.
I honestly have no idea what you are seeing, other than light. I know that you are motivated by food. Your spoon, you hold it longer than anything and you turn your head in the direction of food. Is this smell, or sight? Only you know, however you are your fathers daughter and he is very proud of your eating:)
You are bearing more and more weight on your tiny little feet. You still wear 0-12 month socks. You also are in 18-24 month clothes and a few 2t. Your are tiny and petite and perfect in every way. You are 23 pounds but I'm not concerned because your diet is very healthy.
You have been going to school for five months and you are thriving. I'm happy to get a chance to observe you in your classroom as much as I can. You may not be the youngest, but currently, you are the adored "baby" in the school and might I add, best dressed too. You're a cool kid!!
I love everything about you. Your tangled, but gorgeous dark brown hair. Your smile, it is so infectious and takes over your body. Your eyelashes are enough to create the word jealousy. Your eyes, I'm envious of the hazel green color, the brown speck at 7 o'clock in your left eye, and the way your eyes sparkle. I love your dimple, your rosy cheeks, your little hands and feet and well, everything.
 |
| Smiling with your entire body |
I love the way you reach for me as you fall asleep. It melts my heart. I also completely adore how you put your finger in your mouth as if you are thinking, just as you drift off into a deep sleep. You turn your wrist inward and even with all my efforts to fix this, it seems comfortable for you. You look so sweet and angelic as you sleep.
 |
| Deep in Dreamland |
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| Perfection |
You love music, especially my crazy songs that often include your name, mommy, daddy, and anything we might be doing at that moment. You smile mostly when I kiss your cheek. Sometimes you turn your head as if it is a game. You also love to have your feet kicked up, especially when you are eating. You use us as a footstool and I think it is so cute. You love fruit of all kinds and yougurt too. Five guys hamburgers are still a favorite. You also like sweets. You must get that from Daddy ;)
Your favorite toys are your tap bells, xylophone, musical garden, Neptune turtle, bumblebee, mozart music cube and all musical apps on the iPad. Did I mention you love music? Your favorite toy this year- your tap bells:) (Thank you Mimi)
You currently wear pink and lavender glasses. We have a vision appointment in a few weeks and once we know more, we might add a third pair. You don't mind your glasses, however you have a few strong dilikes. You hate having your hair brushed, or your teeth. You dislike your reflux pill but strongly detest Benadryl (given only when sick). You are so smart. You hold it in your mouth, and just when we think you swallowed, it pours out of mouth. You also really dislike having you nose wiped.
In all my years and all my experience with children, I have never know such delight when you wake from a cat nap. You are happy, and you know happy, and that is all that matters in life. You are my littlest inspiration and my favorite thing in life. You are amazing.
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| After a Nap |
Savannah Mae, thank you!! Thank you for being you and teaching me. Thank you for inspiring me as your mommy and as your number one advocate. I will always be here for you to help you and protect you along the way. Parenting you, a child with special needs, is a gift, the greatest, most precious gift. Maybe I was hesitant in the beginning that this journey would have true happiness and meaning, but now I can say with confidence, you have made me a better person and I can't thank you enough. Happy 1/2 birthday to my favorite little girl. I love you so much!!
Love, Mommy
Saturday, November 15, 2014
Advocate for Life...
Dear Savannah Mae,
As our journey has progressed, I am trying to become more aware of your needs and less concerned about judgement. I guess it's about being the best advocate. I know you best and I truly have the best understanding of you, not to mention best interest at heart.
Today, we attended a family party. You really don't care much for parties, especially indoor parties. It is a totally sensory overload for you. We went anyway because it was for your cousin. As family gathered around the table to sing Happy Birthday, I could feel your body becoming more overwhelmed. When I mean overwhelmed, I mean throwing your body back, hands up over your head, with tightness running from your head to your toes. I kinda joked and said that you needed earmuffs for this setting. I do feel that something may be beneficial someday, maybe music and headphones? something to give you a calming sense when things are a bit crazy. I was not thrilled by the snarky remark that it was me who was overwhelmed, not you. Yes, it can be overwhelming to be in a place where you feel judged.
I guess in these situations I feel defeated. Really?? Can someone who spends little time with you really know your needs? Maybe it's because I'm your mama bear? I am protective of you, very much so. I keep you with me when we are in these settings, holding you and trying to give you the calm that a mama can bring to their child. I know you. I know that you have never really been one who loves to be cuddled, held, passed from person to person. I know that you startle easily, it's been said that you may have a severe startle reflex and I wholeheartedly believe it. You startle at a sneeze, ice cubes from the fridge, a cough, motorcycle, and even when you don't anticipate conversation. I know that because of your low vision, this makes it hard. I do. It is different for you as a three year old and some of your disabilities are overlooked in settings such as this. Crazy thing is, you don't seem overwhelmed at school, or at least that's what your teacher says. I feel this is accurate considering most days, you come home with happy reports. Sandy is very in tune to your emotions and I am so proud of you for adjusting to your school environment.
Speaking of school I am so happy with the class we chose. Inclusion is wonderful and I am really happy we chose this path for you. I had two, very happy reports this past week, which is a sign to me that you aren't overwhelmed. It's nice to feel you are included in activities with other children with and without special needs. You are the baby in the classroom and in the entire school. Everyone who knows you loves you. One thing I know for sure, "I will love you for always, and for everything that you are." To me, there is not a greater bond than loving you!!
I hope you feel better tomorrow. It has been almost three weeks of a yucky cold. Wednesday and Thursday of this week, you smiled at life the way I smile about you. I love you sweet pea.
Love, Mommy
As our journey has progressed, I am trying to become more aware of your needs and less concerned about judgement. I guess it's about being the best advocate. I know you best and I truly have the best understanding of you, not to mention best interest at heart.
Today, we attended a family party. You really don't care much for parties, especially indoor parties. It is a totally sensory overload for you. We went anyway because it was for your cousin. As family gathered around the table to sing Happy Birthday, I could feel your body becoming more overwhelmed. When I mean overwhelmed, I mean throwing your body back, hands up over your head, with tightness running from your head to your toes. I kinda joked and said that you needed earmuffs for this setting. I do feel that something may be beneficial someday, maybe music and headphones? something to give you a calming sense when things are a bit crazy. I was not thrilled by the snarky remark that it was me who was overwhelmed, not you. Yes, it can be overwhelming to be in a place where you feel judged.
 |
| Comfy with Mommy. |
I guess in these situations I feel defeated. Really?? Can someone who spends little time with you really know your needs? Maybe it's because I'm your mama bear? I am protective of you, very much so. I keep you with me when we are in these settings, holding you and trying to give you the calm that a mama can bring to their child. I know you. I know that you have never really been one who loves to be cuddled, held, passed from person to person. I know that you startle easily, it's been said that you may have a severe startle reflex and I wholeheartedly believe it. You startle at a sneeze, ice cubes from the fridge, a cough, motorcycle, and even when you don't anticipate conversation. I know that because of your low vision, this makes it hard. I do. It is different for you as a three year old and some of your disabilities are overlooked in settings such as this. Crazy thing is, you don't seem overwhelmed at school, or at least that's what your teacher says. I feel this is accurate considering most days, you come home with happy reports. Sandy is very in tune to your emotions and I am so proud of you for adjusting to your school environment.
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| Little Warrior in your Little Room |
Speaking of school I am so happy with the class we chose. Inclusion is wonderful and I am really happy we chose this path for you. I had two, very happy reports this past week, which is a sign to me that you aren't overwhelmed. It's nice to feel you are included in activities with other children with and without special needs. You are the baby in the classroom and in the entire school. Everyone who knows you loves you. One thing I know for sure, "I will love you for always, and for everything that you are." To me, there is not a greater bond than loving you!!
I hope you feel better tomorrow. It has been almost three weeks of a yucky cold. Wednesday and Thursday of this week, you smiled at life the way I smile about you. I love you sweet pea.
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| Classic smile after a cat nap!! |
Love, Mommy
Wednesday, October 29, 2014
Halloween and Visual Impairment...
Dear Savannah,
A lot of nights my mind wonders into a worrisome place. My worries are always more intense when you are not feeling well and we have had a very busy past eight weeks filled with appointments. Might I add, all appointments have led to great results. Spinal fluid is normal, brain imaging is your normal, no signs of seizure activity, and your hernia just needs to be watched, no surgery needed at this point. Tonight, you seem to be feeling better, but now it is in your chest.
Tonight, I feel a little down thinking about Halloween which is only two days away Tomorrow we have your Halloween party. Two years ago, I watched a happy toddler on her daddy's shoulders and I started to cry. I want you to experience Halloween the way I did as a child. Visual impairments are tough. We want to give you every opportunity to experience all things we know and love. I guess if I am being honest, I want you to see all the costumes, well, maybe not all, and I want you to truly get excited. Maybe in a few years, you will have a better understanding.
I have been thinking about the day we found out you were legally blind. My heart sank knowing the challenges we would face as a family. However, even though we have never made eye contact, our hearts are fully connected. I love you more than anything on this planet, and I know you love me too. You have always been so excited by my voice or my touch, or my crazy songs I sing. Lately, you have been comforted in my arms and extra snugly. There is no better feeling than to have your body snuggled against mine. You are my little forever baby.
It took me a week or so to go through sad emotions. It is not that I never get sad now, I have just learned to embrace every single part of what makes you Savannah. You are my daughter and there will never be a disability in the world that will stop me from loving you or giving you everything you need. I just make appropriate adaptations for you. It is the most challenging and rewarding job and I can't count the times I praise you daily for being the best daughter ever. You truly are and I am so incredibly lucky. I love you pumpkin!!
Love, Mommy
A lot of nights my mind wonders into a worrisome place. My worries are always more intense when you are not feeling well and we have had a very busy past eight weeks filled with appointments. Might I add, all appointments have led to great results. Spinal fluid is normal, brain imaging is your normal, no signs of seizure activity, and your hernia just needs to be watched, no surgery needed at this point. Tonight, you seem to be feeling better, but now it is in your chest.
Tonight, I feel a little down thinking about Halloween which is only two days away Tomorrow we have your Halloween party. Two years ago, I watched a happy toddler on her daddy's shoulders and I started to cry. I want you to experience Halloween the way I did as a child. Visual impairments are tough. We want to give you every opportunity to experience all things we know and love. I guess if I am being honest, I want you to see all the costumes, well, maybe not all, and I want you to truly get excited. Maybe in a few years, you will have a better understanding.
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| Salem Parade |
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| Savannahbug and Mommy |
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| Ladybug from head to toes:) |
I have been thinking about the day we found out you were legally blind. My heart sank knowing the challenges we would face as a family. However, even though we have never made eye contact, our hearts are fully connected. I love you more than anything on this planet, and I know you love me too. You have always been so excited by my voice or my touch, or my crazy songs I sing. Lately, you have been comforted in my arms and extra snugly. There is no better feeling than to have your body snuggled against mine. You are my little forever baby.
It took me a week or so to go through sad emotions. It is not that I never get sad now, I have just learned to embrace every single part of what makes you Savannah. You are my daughter and there will never be a disability in the world that will stop me from loving you or giving you everything you need. I just make appropriate adaptations for you. It is the most challenging and rewarding job and I can't count the times I praise you daily for being the best daughter ever. You truly are and I am so incredibly lucky. I love you pumpkin!!
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| A selfie from the pumpkin patch and the world's cutest pumpkin |
Love, Mommy
Wednesday, October 1, 2014
Welcoming October...
Dear Savannah,
I'll admit, I love October. However, this past September was filled with appointments and I am so glad it is over. We had eight appointments, some routine follow-up, some new.
This past week was really tough. You were sedated for the first time since your surgery in June of 2011. You had full brain imaging and a lumbar puncture. It was awful and longer than expected. It was supposed to last for about 90 minutes and lasted for about 135 minutes. You developed stridor, again, so the time apart from me was about four hours. It was rough. Not to mention you have your mommies poor veins and it took them about six attempts before an IV was placed. Your poor fragile but resilient body has more bruises than I would ever like to see. I say all this, but, I am truly thankful that your results are steady and the glucose in you spinal fluid is normal.
Next week, we will be going in for a 24 hour EEG because we are concerned that you might be having seizures. You have these staring spells followed by some spastic movements and then you cry. It's very predictable once this behavior starts. I pray that this is not the case. Mid October, we meet with a pediatric surgeon to discuss your hernia.
On a lighter note, we had your Hydrocephalus walk in September and that was a lot of fun. Our team grew with more family members. Lydia, Kelli, Daddy, and I have been walking for three years in a row. We continue to support the hydrocephalus association and we raised over $2000.
We also went to a pumpkin patch with Hannah over the weekend. I sure love her mommy. I can relate to her on so many levels and you girls make a very cute duo, Hannah and Savannah.
I'll admit, I love October. However, this past September was filled with appointments and I am so glad it is over. We had eight appointments, some routine follow-up, some new.
This past week was really tough. You were sedated for the first time since your surgery in June of 2011. You had full brain imaging and a lumbar puncture. It was awful and longer than expected. It was supposed to last for about 90 minutes and lasted for about 135 minutes. You developed stridor, again, so the time apart from me was about four hours. It was rough. Not to mention you have your mommies poor veins and it took them about six attempts before an IV was placed. Your poor fragile but resilient body has more bruises than I would ever like to see. I say all this, but, I am truly thankful that your results are steady and the glucose in you spinal fluid is normal.
Next week, we will be going in for a 24 hour EEG because we are concerned that you might be having seizures. You have these staring spells followed by some spastic movements and then you cry. It's very predictable once this behavior starts. I pray that this is not the case. Mid October, we meet with a pediatric surgeon to discuss your hernia.
On a lighter note, we had your Hydrocephalus walk in September and that was a lot of fun. Our team grew with more family members. Lydia, Kelli, Daddy, and I have been walking for three years in a row. We continue to support the hydrocephalus association and we raised over $2000.
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| Mommy's little girl!! |
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| Daddy's Little girl |
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| Team Savannah Smiles |
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| Kelli and Lydia |
We also went to a pumpkin patch with Hannah over the weekend. I sure love her mommy. I can relate to her on so many levels and you girls make a very cute duo, Hannah and Savannah.
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| Hi!! |
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| Hannah and Savannah Savannah, you are so brave and so inspiring to me. I am so blessed to be your momma. Love, Mommy |
Thursday, September 18, 2014
A Wedding Story
Dear Savannah,
This past weekend, Daddy and I attended a family wedding. From the very beginning, this wedding caused me a little heartache and a lot of anxiety. I debated whether or not to even go, because you were not considered to be a part of the wedding party. I asked for advice from many people and in the end, I decided I wouldn't want someone to try and dictate who I should have in my wedding party.
The truth is, you are the same relation to the bride as the flower girl and ring bearer. You are also three, just like them. Maybe it would be different in my family. We are not as close to the bride as your cousins, so I'll give her the benefit of the doubt. I am not even sure how we would have made it work, but I would have tried. As your mommy, I just want you to be included in everything. You're my passion, inclusion is my passion.
At the wedding, your cousins were dancing together and an overwhelming sense of hurt struck me. I wanted so bad for you to enjoy this too. I want you to know what dancing feels like on your two itty bitty feet. I just want you to have the same acceptance as the do. My heart was crushed and the tears were flowing. I stepped outside to collect my emotions.
You are an amazing little girl!! Each and everyday, I tell you this and smoother you with love. You are the sweetest and most beautiful little girl on the planet. I know there will be a day when you are a part of a wedding and you will be the most beautiful girl in the room, just like always.
I love you so much, Sweet Savannah Mae. You are my favorite thing!!
This past weekend, Daddy and I attended a family wedding. From the very beginning, this wedding caused me a little heartache and a lot of anxiety. I debated whether or not to even go, because you were not considered to be a part of the wedding party. I asked for advice from many people and in the end, I decided I wouldn't want someone to try and dictate who I should have in my wedding party.
The truth is, you are the same relation to the bride as the flower girl and ring bearer. You are also three, just like them. Maybe it would be different in my family. We are not as close to the bride as your cousins, so I'll give her the benefit of the doubt. I am not even sure how we would have made it work, but I would have tried. As your mommy, I just want you to be included in everything. You're my passion, inclusion is my passion.
At the wedding, your cousins were dancing together and an overwhelming sense of hurt struck me. I wanted so bad for you to enjoy this too. I want you to know what dancing feels like on your two itty bitty feet. I just want you to have the same acceptance as the do. My heart was crushed and the tears were flowing. I stepped outside to collect my emotions.
You are an amazing little girl!! Each and everyday, I tell you this and smoother you with love. You are the sweetest and most beautiful little girl on the planet. I know there will be a day when you are a part of a wedding and you will be the most beautiful girl in the room, just like always.
I love you so much, Sweet Savannah Mae. You are my favorite thing!!
Monday, September 8, 2014
What Does Beauty Mean to You??
Dear Savannah,
I often feel sad that you don't even know just how beautiful you are. However, I know that beauty truly comes from the heart. You are incredibly beautiful to me visually, however, your little sweet and feisty personality is even more beautiful. You are the definition of beauty and I am beyond grateful to call you my daughter.
Please watch this video and see how three individuals who are blind described beauty:)
http://www.buzzfeed.com/celestinomark/witnessing-how-the-blind-describe-beauty-might-change-the-wa%232yiyoov?s=mobile
I can only imagine you would describe our love for you as beauty, well, maybe a cheeseburger. Hopefully, someday, you will describe beauty to me. I love you little lovebug.
Love, Mommy
I often feel sad that you don't even know just how beautiful you are. However, I know that beauty truly comes from the heart. You are incredibly beautiful to me visually, however, your little sweet and feisty personality is even more beautiful. You are the definition of beauty and I am beyond grateful to call you my daughter.
Please watch this video and see how three individuals who are blind described beauty:)
http://www.buzzfeed.com/celestinomark/witnessing-how-the-blind-describe-beauty-might-change-the-wa%232yiyoov?s=mobile
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| Definition of Beauty |
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| Beauty is swinging!! |
I can only imagine you would describe our love for you as beauty, well, maybe a cheeseburger. Hopefully, someday, you will describe beauty to me. I love you little lovebug.
Love, Mommy
Sunday, August 31, 2014
On the Eve of September 2014
Dear Savannah,
Well, it official. Summer is ending and we are relaxing this weekend enjoying our time as a family before you go back to school (sniff, sniff) and I go back to work. We have had a very busy summer trying to adjust to school and a different schedule. On Thursday and Friday, we had the afternoons together as my work schedule was different. Most Thursdays, we would walk to the Farmer's market and enjoy our time together.
I launched a Hydrocephalus Awareness Tee shirt Campaign for your upcoming walk and I raised $558. It was a bit stressful and I don't think I will be interested in doing it again but we are definitely spreading awareness, all because of you. You have inspired me in so many ways. I am not he same person I was before you came into my world and I am better because of you. I am more compassionate than ever and truly aware of the uniqueness in all of us.
Speaking of inspired, earlier this month we had the opportunity to meet Team Hoyt, a father son duo Dick and Rick Hoyt from Massachusetts. Rick has special needs like you and he alongside his father has competed in many athletic endeavors including marathons and triathlons. His dad will push him or pull him in a boat or cycle with him in a special seat. It is amazing. This past year was their last Boston Marathon. I was beyond thrilled to get photos with them.
We recently took another trip to Kansas to visit our family. I swear I feel like Super Mom lugging all of our needed gear. I never have a problem packing just one piece of luggage for the two of us but now we can no longer use your infant carrier (not that we should have last time either) because you are way too long. That leaves us with your toddler seat which probably weighs more than you and the fact that you cannot sit unassisted, we need it, not to mention you are way too squirmy to hold for an extended period. However, it is very worth our trip home.
I love seeing the way Asher and Oliver interact with you. Oliver would bring toys to "Sabanna", and Asher has always adored his sweet girl. He once told me, "Baby Girls don't crawl." As he gets older, he will understand more and more about you but I know he will love you and adore you even more. Of course the rest of the family was happy we were visiting too. If only we were closer.
Tomorrow starts a crazy, busy, month. We have an appointment every week and it looks like we will be adding another but I am still waiting to hear back from your pediatrician. We also are going to a adaptive equipment expo, a wedding, your walk, and a birthday party, not to mention it is almost Daddy's birthday. Busy month ahead...
Well, it official. Summer is ending and we are relaxing this weekend enjoying our time as a family before you go back to school (sniff, sniff) and I go back to work. We have had a very busy summer trying to adjust to school and a different schedule. On Thursday and Friday, we had the afternoons together as my work schedule was different. Most Thursdays, we would walk to the Farmer's market and enjoy our time together.
I launched a Hydrocephalus Awareness Tee shirt Campaign for your upcoming walk and I raised $558. It was a bit stressful and I don't think I will be interested in doing it again but we are definitely spreading awareness, all because of you. You have inspired me in so many ways. I am not he same person I was before you came into my world and I am better because of you. I am more compassionate than ever and truly aware of the uniqueness in all of us.
Speaking of inspired, earlier this month we had the opportunity to meet Team Hoyt, a father son duo Dick and Rick Hoyt from Massachusetts. Rick has special needs like you and he alongside his father has competed in many athletic endeavors including marathons and triathlons. His dad will push him or pull him in a boat or cycle with him in a special seat. It is amazing. This past year was their last Boston Marathon. I was beyond thrilled to get photos with them.
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| Team Savannah to the left, Team Hoyt to the right |
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| Team Hoyt + Savannah |
We recently took another trip to Kansas to visit our family. I swear I feel like Super Mom lugging all of our needed gear. I never have a problem packing just one piece of luggage for the two of us but now we can no longer use your infant carrier (not that we should have last time either) because you are way too long. That leaves us with your toddler seat which probably weighs more than you and the fact that you cannot sit unassisted, we need it, not to mention you are way too squirmy to hold for an extended period. However, it is very worth our trip home.
 |
| All of our gear, nothing was checked |
I love seeing the way Asher and Oliver interact with you. Oliver would bring toys to "Sabanna", and Asher has always adored his sweet girl. He once told me, "Baby Girls don't crawl." As he gets older, he will understand more and more about you but I know he will love you and adore you even more. Of course the rest of the family was happy we were visiting too. If only we were closer.
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| Mimi's Awesome Swing |
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| We used the blow up boat bead as a safe place for you:) |
Tomorrow starts a crazy, busy, month. We have an appointment every week and it looks like we will be adding another but I am still waiting to hear back from your pediatrician. We also are going to a adaptive equipment expo, a wedding, your walk, and a birthday party, not to mention it is almost Daddy's birthday. Busy month ahead...
Tuesday, July 22, 2014
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
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
Friday, July 18, 2014
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
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
Thursday, July 17, 2014
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.
Mommy is working on a very exciting project. Stay tuned....
On instagram: Junebugsmmma
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
Sunday, July 13, 2014
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
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
Sunday, June 29, 2014
A Visit from Mimi
Dear Savannah,
A few weeks have passed since I last sat down to update you with our life. We had a great visit with Mimi. We explored Salem, Portsmouth, NH and Kittery, ME. We did a lot of shopping. Mimi bought you a lot of new school clothes. It was great to have her here with us. I really needed her, just as I know you will always need me. We never outgrow our mommies.
Mimi has always been a role model for me. She is one of the kindest people you will ever meet. I have learned a lot from her over the years, most important, motherhood. She has taught me so much about being a mother and she has helped me face my challenges throughout my life. She has been a crucial support system over the past few years, shedding tears over the phone when she could not be here to support me physically, she has always been here for me emotionally. I will always be here for you too, sweet Savannah. You have taught our family so much more than you will ever know. I am a better person because of you.
After I dropped Mimi at the airpot, I dropped you at school, for FIVE hours. I wasn't sure what to do with myself because I was on vacation at work. For the first time, in over three years, I walked into a empty house and it was weird. Thankfully, Kate you therapist from EI called on my way back and dropped by for a short visit. It was nice to see her. After she left, I debated, pick Savannah up before lunch, or go get a pedicure. Surprisingly, I left you at school and decided to get a pedicure. It was good for me to try and get in this routine. It i , however, very weird to look in my mirror to an empty car seat. We were both happy to see each other a pickup. As much as I miss you, I have a huge sense of pride(a little sadness too) to say my daughter goes to school.
Unfortunately, you have been exposed to new germs and you have been sick for the past week. Finally, you are smiling again and feeling better. You even thought you would share this set of germs with Mommy and Daddy. Better us than you and better me than Daddy because he is a Type 1 diabetic and it is harder on his immune system than mine. I do think you will be up for school Tuesday, as you begin the summer session.
We went to the pool and the beach this last week. Like Mommy, you only like warm water and don't care for the cold salty Atlantic ocean. I put your feet in and you quickly removed them. It was a great opportunity to put you in my favorite new bathing suit. I call you my country bumpkin when you are wearing it. Red gingham and ruffles is all Kansas in my mind. I love it and I love you to the moon and back...
A few weeks have passed since I last sat down to update you with our life. We had a great visit with Mimi. We explored Salem, Portsmouth, NH and Kittery, ME. We did a lot of shopping. Mimi bought you a lot of new school clothes. It was great to have her here with us. I really needed her, just as I know you will always need me. We never outgrow our mommies.
 |
| Mimi & Savannah |
 |
| Beautiful Ladies |
Mimi has always been a role model for me. She is one of the kindest people you will ever meet. I have learned a lot from her over the years, most important, motherhood. She has taught me so much about being a mother and she has helped me face my challenges throughout my life. She has been a crucial support system over the past few years, shedding tears over the phone when she could not be here to support me physically, she has always been here for me emotionally. I will always be here for you too, sweet Savannah. You have taught our family so much more than you will ever know. I am a better person because of you.
After I dropped Mimi at the airpot, I dropped you at school, for FIVE hours. I wasn't sure what to do with myself because I was on vacation at work. For the first time, in over three years, I walked into a empty house and it was weird. Thankfully, Kate you therapist from EI called on my way back and dropped by for a short visit. It was nice to see her. After she left, I debated, pick Savannah up before lunch, or go get a pedicure. Surprisingly, I left you at school and decided to get a pedicure. It was good for me to try and get in this routine. It i , however, very weird to look in my mirror to an empty car seat. We were both happy to see each other a pickup. As much as I miss you, I have a huge sense of pride(a little sadness too) to say my daughter goes to school.
 |
| Kate and you on your last EI day. |
Unfortunately, you have been exposed to new germs and you have been sick for the past week. Finally, you are smiling again and feeling better. You even thought you would share this set of germs with Mommy and Daddy. Better us than you and better me than Daddy because he is a Type 1 diabetic and it is harder on his immune system than mine. I do think you will be up for school Tuesday, as you begin the summer session.
We went to the pool and the beach this last week. Like Mommy, you only like warm water and don't care for the cold salty Atlantic ocean. I put your feet in and you quickly removed them. It was a great opportunity to put you in my favorite new bathing suit. I call you my country bumpkin when you are wearing it. Red gingham and ruffles is all Kansas in my mind. I love it and I love you to the moon and back...
 |
| My Country Bumpkin |
Love, Mommy
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