Myanna is 4
Quick summary of Myanna's life so far...
Today, 4 years ago, I received the call that birth mom was heading to the hospital possibly leaking water... A couple hrs later our baby girl had arrived. We were 15hrs away and frantic to get there asap. She was 3lbs 5ozs, 16 inches long. They estimated her to be 34 weeks, iugr to 29. (Unfortunately, she had high doses prescription and non prescription drugs in her system). At five months old she underwent open heart surgery for an ASD and VSD, and symptoms of congestive heart failure. She has had troubles her entire life with eating and maintaining a healthy weight.
The past four years have been so many DX, many I didn't even know existed... But looking past all those, she is one hell of a fighter. She is strong and resilient, hell on wheels. She's smart and inquisitive, and doesn't like to take no for an answer... Quite stubborn! She goes to special needs preschool 5 days a week with 2 days of speech therapy, and private speech and occupational therapy 4 days/wk.
Where are we now? Still fighting and learning, but most of all, we are always in awe of her. She has the innate ability to make anyone smile and fall in love with her.
She now has autism, sensory processing, high anxiety, ocd, dyspraxia of speech, five feeding disorders, tight filum terminale and a syrinx that have her followed by the spina bifida clinic, mild CP, which causes her hypotonic arms and hands. She has all these...But they don't have her, they don't define her. She is beating all the odds.
I love her more than the world, she has brought a new life and energy to all of my family. A bright light we didn't know we were missing, or as my older daughter says "the puzzle piece we didn't know was missing". You see, she holds us all together...My ray of sunshine, my tiny peanut with the look of an angel.
Today, 4 years ago, I received the call that birth mom was heading to the hospital possibly leaking water... A couple hrs later our baby girl had arrived. We were 15hrs away and frantic to get there asap. She was 3lbs 5ozs, 16 inches long. They estimated her to be 34 weeks, iugr to 29. (Unfortunately, she had high doses prescription and non prescription drugs in her system). At five months old she underwent open heart surgery for an ASD and VSD, and symptoms of congestive heart failure. She has had troubles her entire life with eating and maintaining a healthy weight.
The past four years have been so many DX, many I didn't even know existed... But looking past all those, she is one hell of a fighter. She is strong and resilient, hell on wheels. She's smart and inquisitive, and doesn't like to take no for an answer... Quite stubborn! She goes to special needs preschool 5 days a week with 2 days of speech therapy, and private speech and occupational therapy 4 days/wk.
Where are we now? Still fighting and learning, but most of all, we are always in awe of her. She has the innate ability to make anyone smile and fall in love with her.
She now has autism, sensory processing, high anxiety, ocd, dyspraxia of speech, five feeding disorders, tight filum terminale and a syrinx that have her followed by the spina bifida clinic, mild CP, which causes her hypotonic arms and hands. She has all these...But they don't have her, they don't define her. She is beating all the odds.
I love her more than the world, she has brought a new life and energy to all of my family. A bright light we didn't know we were missing, or as my older daughter says "the puzzle piece we didn't know was missing". You see, she holds us all together...My ray of sunshine, my tiny peanut with the look of an angel.

Myanna is four years old! She is amazing and filled with wonder about the world. She still has an unlimited supply of energy which I'm thinking most people would envy. As much as we add to her schedule, there is no slowing her down. She's like a sponge, the more we present to her the more progress she makes. This past year she went from special needs preschool two days a week, to five days a week. She went from occupational therapy once a week, to twice and speech from just in school to private as well. She now receives speech 4x a week and the progress has been miraculous. Even the speech therapists are singing her praise. We will be heading to our next IEP meeting soon and I'm anxious to here what new goals they will set for her next year. So to celebrate Anna's accomplishments again this year, I am sharing some of our big "cans". We are so very proud of our little girl!
Myanna can...
And does go to Preschool!
Throw and catch a ball
Wear ponytails, for a short period
Use sentences
Distinguish and names colors
Ride a bicycle!
Brush her hair
Get dressed with little help
Eat pizza
Ride a horse!
Do a somersault and learning backwards ones
Draw people and learning to draw a square
Play hide and seek
Go potty regularly
Eat a pancake!
Sit at a restaurant for dinner
Put on her sneakers
Play with Jello
Use a sippy cup for milk
Ride on a sled
Blow bubbles
Take her medicine without vomiting!
name colors
walk backwards
walk on a balanced beam
hop
Eat a s'mores pop tart
get her hair cut
Climb a rope ladder
Do a 12 piece puzzle
Sleep in her own room, with mommy
Sing Let it Go
Lick food, like chocolate!
Eat a bowl of macaroni and cheese
Go on a cruise!
Sit (or stand) during church
Do gymnastics class
This year has gone through some changes with our little one. The developmental pediatrician added Autism to her list of diagnosis, and recently the neurologist added mild cerebral palsy. This past year we also found out she has a syrinx in her spinal column as well as a fatty tight filum which can cause tethered cord. All of these things have made for some tough moments, conversations and unfortunately a horrific test that needed to be done. The results of the test were good however and she does not need surgery at this time. We will go back in another year to recheck her spine at the spina bifida clinic in Boston, with an MRI and ultrasound.
As far as Myanna, she is still seeing the world through rose colored glasses. She loves watching the ants crawl by or even holding a worm. Her best buddy Pixie is always by her side and hates to have her out of her sight. She is getting tall and I believe she is 39 inches now, and about 291/2 pounds. Feeding is still a challenge but one day I hope to break down those walls, maybe when she explains to me why she won't eat foods that could nourish her body rather than a milk combo that we have to make everyday. Don't get me wrong, I am very grateful for this milk concoction, it keeps my girl from needing a gtube.
The trips to Boston we have been taking have been helpful in making hard decisions regarding Anna and her health. The doctors there seem very knowledgeable and I am glad I found them. Recently, the neurologist said she is one amazing little girl. She must have someone watching over her to have this going on in her spine and no symptoms or discomfort. Yes, I believe she has many angels watching over her as well as her own strong will.
For 6 months I have heard the same phrases at least once daily, "I want to have a Frozen party for my birthday" and "I want all my friends to come to my party"
Well, this past Saturday she got her wish. Her friends from school and their families all came to her old school where they have a nice fenced in playground for little ones as well as nice equipment. She was in heaven and had a smile on her face the entire time. I never had so many parents thank me for having a party, but to see all their faces was priceless. They really care for one another. It warms your heart. My little girl is four, and feisty, fresh, funny, fantastic, fast, fearless, fabulous, fashionable, friendly and a force to be reckoned with. She's a girl who knows what she wants and good luck to the person that tries to stand in her way. Love my fiery firecracker! More Than the World!
Myanna can...
And does go to Preschool!
Throw and catch a ball
Wear ponytails, for a short period
Use sentences
Distinguish and names colors
Ride a bicycle!
Brush her hair
Get dressed with little help
Eat pizza
Ride a horse!
Do a somersault and learning backwards ones
Draw people and learning to draw a square
Play hide and seek
Go potty regularly
Eat a pancake!
Sit at a restaurant for dinner
Put on her sneakers
Play with Jello
Use a sippy cup for milk
Ride on a sled
Blow bubbles
Take her medicine without vomiting!
name colors
walk backwards
walk on a balanced beam
hop
Eat a s'mores pop tart
get her hair cut
Climb a rope ladder
Do a 12 piece puzzle
Sleep in her own room, with mommy
Sing Let it Go
Lick food, like chocolate!
Eat a bowl of macaroni and cheese
Go on a cruise!
Sit (or stand) during church
Do gymnastics class
This year has gone through some changes with our little one. The developmental pediatrician added Autism to her list of diagnosis, and recently the neurologist added mild cerebral palsy. This past year we also found out she has a syrinx in her spinal column as well as a fatty tight filum which can cause tethered cord. All of these things have made for some tough moments, conversations and unfortunately a horrific test that needed to be done. The results of the test were good however and she does not need surgery at this time. We will go back in another year to recheck her spine at the spina bifida clinic in Boston, with an MRI and ultrasound.
As far as Myanna, she is still seeing the world through rose colored glasses. She loves watching the ants crawl by or even holding a worm. Her best buddy Pixie is always by her side and hates to have her out of her sight. She is getting tall and I believe she is 39 inches now, and about 291/2 pounds. Feeding is still a challenge but one day I hope to break down those walls, maybe when she explains to me why she won't eat foods that could nourish her body rather than a milk combo that we have to make everyday. Don't get me wrong, I am very grateful for this milk concoction, it keeps my girl from needing a gtube.
The trips to Boston we have been taking have been helpful in making hard decisions regarding Anna and her health. The doctors there seem very knowledgeable and I am glad I found them. Recently, the neurologist said she is one amazing little girl. She must have someone watching over her to have this going on in her spine and no symptoms or discomfort. Yes, I believe she has many angels watching over her as well as her own strong will.
For 6 months I have heard the same phrases at least once daily, "I want to have a Frozen party for my birthday" and "I want all my friends to come to my party"
Well, this past Saturday she got her wish. Her friends from school and their families all came to her old school where they have a nice fenced in playground for little ones as well as nice equipment. She was in heaven and had a smile on her face the entire time. I never had so many parents thank me for having a party, but to see all their faces was priceless. They really care for one another. It warms your heart. My little girl is four, and feisty, fresh, funny, fantastic, fast, fearless, fabulous, fashionable, friendly and a force to be reckoned with. She's a girl who knows what she wants and good luck to the person that tries to stand in her way. Love my fiery firecracker! More Than the World!
Recently, I finally got around to finishing the first of many "life books" for Myanna. It's her first introduction into where she came from. It tells about when we met her and the day we brought her home. She was so very excited to have a book of her own with all the photos of her and her family. Daddy read it to her and she kept giving him hugs throughout the story. She says, I am special and you chose me. It's great to share her story with her and as she grows older we will expand on her story. I was very impressed by how beautiful it was printed. (thank you shutterfly!)
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