#littlestwarriorwednesday

MOST RECENT

Meet Hattie!
#littlestwarriorwednesday
Six months ago, we were waiting for our scheduled c-section for our third child. We made it back to the OR and everything was similar to our previous two c-sections until 8:41 AM. I heard "Look at those cheeks!" from one of the nurses and then my worst fear.... SILENCE. I immediately knew something was wrong and started asking why she wasn't crying. She was in respiratory distress and was whisked off to the NICU. A nurse quietly came to tell me everything was going to be ok, but Hattie needed to be on oxygen and was exhibiting some "features" that they wanted to investigate. I was stunned. .
Hattie was thankfully on room air within an hour. The features the doctors wanted to look into were her scaly dry skin and shortened limb lengths. She was 8 lbs 15 oz and only 17 inches long. .
Our doctors completed a ton of tests, x-rays, and ultrasound scans and brought in specialists. After her opthamologist found congential cataracts and the genetics counselor consulted with the pediatric dermatologist, we got a call that Hattie was RARE to the tune of 1 in 400,000. She was diagnosed with chondrodysplasia punctata type 2 or Conradi Hunermann Syndrome which is an X-linked dominant genetic condition that affects primarily girls. The syndrome is categorized by skeletal malformations, skin abnormalities, cataracts, and short stature (we are only 2nd percentile for height).
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Hattie has bilateral congenital cataracts, scoliosis, hip dysplasia, ichthyosis, long bone shortening in all limbs with asymmetrical shortening in the left femur, and cicatricial alopecia. We rock an eye patch for 3 hours a day to strengthen our weaker eye and a helmet to fix our flat noggin (plagiocephaly). Eventually we will have cataract and leg lengthening surgeries. Early intervention and outpatient OT/PT are already helping us meet milestones! .
Since Conradi varies widely, we don't have a clear picture of what our future may hold. We just know we are BLESSED to be some of the lucky few on this journey and couldn't imagine a day without our Holland tour guide leading the way! Thanks for reading Hattie's story! @ford.cora.hattie

Meet Sebastian!
#littlestwarriorwednesday
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I remember that bitter sweet day in October. It was my 25th birthday, and you were 2 days old when the genetic doctors came to us and gave us your suspected diagnosis. I sat there in shock, staring at them angrily as I fought back many tears and held your fathers hand tighter than I ever have. They diagnosed you with a Cornelia de Lange Syndrome and prepared us for all of the things you would “never” do. Selling you so short.
We received apology after apology for your diagnosis with barely any congratulations or sign of excitement that the child we had so anxiously waited to meet, was here.
As thorough as many of these genetic doctors were, they left out so many important pieces of information- everything you WOULD do.
They didn’t tell me that your smile would light up the darkest of days. They didn’t tell me that you would make me a better person and give new meaning to our life.
They didn’t tell me that you would teach me patience, and perseverance , and even more unconditional love I already though was God given to me.
They didn’t tell me about all of the knowledge I would acquire caring for you.
Your body may not be able to fully physically speak as you grow- but your spirit, your soul, speaks loudly in so many other ways. CdLS will cause many challenges for you and your future. As much as I wish I could take away all the pain you’ve endured- the surgeries, infections, every “close call”. I wouldn’t change WHO you are. You are a miracle. You are a fighter. And you are ours.❤️ @stephg_9211

Meet Saharsha! #littlestwarriorwednesday
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Saharsha was diagnosed with #cerebralpalsy a few days short of her first birthday. At that point we were heartbroken, angry, devastated all at the same time. But no emotion felt stronger than the love we had for her. My best friend said to me then that you as a mother know deep down what your child is capable of, do not let a diagnosis determine otherwise. Till this date I hold those words close to my heart. .
We moved from Colombo to Singapore to Sydney now all because we felt that in the other places she wasn’t challenged and pushed enough to reach her full potential. And true to that since being in Sydney and seeing a physiotherapist who’s not only strong professionally but literally loves Saharsha to bits, she has only thrived and now walks in a walker and is working hard on her balance to reach our big dream of walking independently. Sure our life is centred around Saharsha and her medical needs and she attends various forms of therapy (physiotherapy, speech, OT, behaviour) five days a week, not a single day goes by that my husband and I do not count our blessings. .
Saharsha has a heart full of joy, she is funny, she is bright, she sings with her heart, she dances with her eyes, she loves reading, she is determined, she is confident. In other words she is also all those other amazing things that her diagnosis tells you absolutely nothing about. Thank you for reading our story. All your support help us in making the world one step closer to being more inclusive than it is today. You can follow our journey on @chronicles_ofzhazha

Meet Ezra! #littlestwarriorwednesday where we #spreadawareness
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After a perfectly healthy pregnancy with no cause for concern, our second son Ezra was born with unexpected medical complications. Ezra was eventually diagnosed with a rare form of #leukemia called juvenile myelomonocyticleukemia (JMML) at 4 months old, and a rare disease called #noonansyndrome at 6 months old.
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Noonan syndrome is a multi-system disorder that can affect all systems of the body. In his 5 short years, Ezra has survived #cancer, #chemo, a #feedingtube in his belly, eye surgery, and multiple other surgeries and procedures. He also suffers from food allergies and gets sick often, fast and furiously. One way that Noonan syndrome presents itself in Ezra's body is that he is very small in stature. He is 5, but he is closer to the size of a 3-year-old (on a tall day). _
Despite all he's been through, Ezra is pure, feisty joy wrapped up in a tiny little package. He entertains us everyday reciting movie lines (Lego Batman is his favorite) and being his usual extraordinary self. He is smart, sassy, resilient, and tenacious, and is always keeping us on our toes (he has lots of accidents and bruises, swells, and bleeds easily - we often say that we wish we could wrap him in bubblewrap to keep him safe). It's hard to remember what life was like before Ezra...he has taught our family so much about what is most important. He has turned our definition of "normal" upside down. He has given us our most important roles as advocates for Noonan syndrome (and it's larger group of related conditions called the RASopathies). He has given us new purpose in life to educate others and to help destigmatize #raredisease and special medical needs through the lives we lead and the stories we share @elisabethparker

Once you appreciate the small victories, there is no need for a finish line 💪🏼 #cpwarrior #specialneeds #27weeker #littlestwarriorwednesday

Meet Gracyn! #littlestwarriorwednesday where we spread awareness ❤️
Gracyn was diagnosed with congenital #cytomegalovirus after a lab tech accidentally ran the wrong blood test. Originally being tested for cystic fibrosis, one wrong key click ended up being the biggest blessing! Most people will have #CMV at some point in their life, but it’s only a risk for people with suppressed immune systems and babies whose mothers catch it while they are pregnant. For Gracyn, CMV has lead to complete hearing loss, vision issues, liver and blood problems, global developments delay, and much more. She continues to blow doctors and therapists away as the original outlook was pretty grim! @stacia_tiller

Meet Tens! #littlestwarriorwednesday where we Spread Awareness ❤️
“3.5 years ago we had a full term baby weighing 3lbs and our lives literally fell out from under us overnight. We knew nothing other than we somehow had been given an elf with crinkly ears and bright red hair the size of a banana to raise.
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After 6 months of hospital stays, tests and surgeries we were given lots of scary acronyms that basically told us one chromosome had too much material, one had too little.
Tens has P136 deletion syndrome, Russel silvers syndrome (#primordialdwarfism), spinal bifida occulta (in Tens case several malformed vertebrae and tethered coed) and #bronchitis obliterons (lung disease).
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A g-tube, membership to dwarfism societies and all manner of therapies were set up. A spinal surgery was done, a bought with RSV was furiously fought and we thought we were on the up and up ready to raise our child to the best of our abilities. Albeit with constant blood sugar tests, tube feeds, nightly injections and all manner of therapies inpatient and out.
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Unfortunately a virus in 2016 once again threw us under the proverbial bus. We nearly lost our little guy, but he pulled through once more. This time with severe lung damage and a new, rare progressive #lungdisease. Scar tissue now spreads in his lungs faster than his dwarfism allows him to outgrow. This adds stress to his already overworked heart. Our life full of home health nurses, ambulance rides, appointments, oxygen, suction, laughter, tears and lung boogers. I feel blessed daily to get this time with such a special being. Tens is our #Trach #Tubie , #dwarfism, #SpinaBifida, #hypoglycemia, #hypertension, CLD WARRIOR and he’s pretty damn awesome :). Thank you for reading his story.”❤️ @hipsterbaby_pdx

Meet Ryder! #littlestwarriorwednesday
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Ryder has Williams Syndrome and his mom @_ashleymontano shared with us a little of Ryder’s story:
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“The first handful of doctors we had seen had all told us the same news, "Ryder was going to die.” Little did we know our lives were forever about to change, Thank God. In walked an older gentleman that smelled just like my grandpa used to, he started examining Ryder, he looked over and told us, “he has Williams Syndrome". He was older and couldn't figure out how to get google on his computer. I literally couldn't wait to get to the car so I could figure out what this syndrome was!”
To read the rest of Ryder’s story visit our blog (link in bio) #williamssyndrome #williamssyndromeawareness #williamssyndromewarrior #williamssyndromeawarenessmonth #wsawareness #spreadawareness

Sunshine and cuteness! Practicing walking with her walker long distances finally now that Michigan has warm weather!! ☀️Swipe for your daily dose of Briella cuteness 💚😍➡️➡️
T-Shirt: @littlest_warrior
Shoes: @catandjacktarget

#littlestwarrior #littlestwarriorwednesday #littlestwarriorsearch2018 #kayewalker #nimbowalker #gobriellago #briellaswishtowalkandtalk2018 #catandjackshoes #afos #smiles #sunglasses #cerebralpalsy #apraxiawarrior #cerebralpalsywarrior #cpwarrior #cpadvocate #apraxiaawareness #motherhoodthroughinstagram #toddlersofinstagram

Meet Zee! #littlestwarriorwednesday @littlest_warrior
Hi! I’m Zee, I was born on September 21, 2017. When I was in mommy’s tummy, her doctor seen that I was just a little extra, fearfully and wonderfully made. They told mommy and daddy I didn’t have all of my arms. Daddy was scared, mommy said; it will be ok! _
When I was born, the doctors just looked shocked. They kept taking amongst themselves, but never said anything to mommy or daddy.
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I was so happy to finally be on my mommy’s chest, enjoying every single second of the cuddles she gave me! A few hours passed, me and mommy were just exhausted.
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Mommy was worried, because I kept spitting up out of my nose. She kept pushing for them to make sure I was ok.
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The nurses finally took me to be evaluated and when they brought me back they told mommy that they suspected I had Cornelia deLange Syndrome (a developmental disorder that affects many parts of the body. The severity of the condition and the associated signs and symptoms can vary widely, but may include distinctive facial characteristics, growth delays, intellectual disability and limb defects). _
Mommy had no clue as to what was going on, she never showed me any different. She still gave me the same cuddles as she was before! Now I’m 6 months old! Still cuddling with my mommy, daddy and my big brother and sister! 💜 #corneliadelangesyndrome

#Repost @littlest_warrior
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Meet Zee! Isn’t he cute?!?! #littlestwarriorwednesday
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Hi! I’m Zee, I was born on September 21, 2017. When I was in mommy’s tummy, her doctor seen that I was just a little extra, fearfully and wonderfully made. They told mommy and daddy I didn’t have all of my arms. Daddy was scared, mommy said; it will be ok!
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When I was born, the doctors just looked shocked. They kept taking amongst themselves, but never said anything to mommy or daddy.
_
I was so happy to finally be on my mommy’s chest, enjoying every single second of the cuddles she gave me!
A few hours passed, me and mommy were just exhausted.
_
Mommy was worried, because I kept spitting up out of my nose. She kept pushing for them to make sure I was ok.
_
The nurses finally took me to be evaluated and when they brought me back they told mommy that they suspected I had Cornelia deLange
Syndrome (a developmental disorder that affects many parts of the body. The severity of the condition and the associated signs and symptoms can vary widely, but may include distinctive facial characteristics, growth delays, intellectual disability and limb defects).
_
Mommy had no clue as to what was going on, she never showed me any different. She still gave me the same cuddles as she was before!
Now I’m 6 months old! Still cuddling with my mommy, daddy and my big brother and sister! 💜 #corneliadelangesyndrome

#Repost @littlest_warrior ・・・
Meet Zee! Isn’t he cute?!?! #littlestwarriorwednesday
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Hi! I’m Zee, I was born on September 21, 2017. When I was in mommy’s tummy, her doctor seen that I was just a little extra, fearfully and wonderfully made. They told mommy and daddy I didn’t have all of my arms. Daddy was scared, mommy said; it will be ok!
_
When I was born, the doctors just looked shocked. They kept taking amongst themselves, but never said anything to mommy or daddy.
_
I was so happy to finally be on my mommy’s chest, enjoying every single second of the cuddles she gave me!
A few hours passed, me and mommy were just exhausted.
_
Mommy was worried, because I kept spitting up out of my nose. She kept pushing for them to make sure I was ok.
_
The nurses finally took me to be evaluated and when they brought me back they told mommy that they suspected I had Cornelia deLange
Syndrome (a developmental disorder that affects many parts of the body. The severity of the condition and the associated signs and symptoms can vary widely, but may include distinctive facial characteristics, growth delays, intellectual disability and limb defects).
_
Mommy had no clue as to what was going on, she never showed me any different. She still gave me the same cuddles as she was before!
Now I’m 6 months old! Still cuddling with my mommy, daddy and my big brother and sister! 💜 #corneliadelangesyndrome

Meet Zee! Isn’t he cute?!?! #littlestwarriorwednesday
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Hi! I’m Zee, I was born on September 21, 2017. When I was in mommy’s tummy, her doctor seen that I was just a little extra, fearfully and wonderfully made. They told mommy and daddy I didn’t have all of my arms. Daddy was scared, mommy said; it will be ok!
_
When I was born, the doctors just looked shocked. They kept taking amongst themselves, but never said anything to mommy or daddy.
_
I was so happy to finally be on my mommy’s chest, enjoying every single second of the cuddles she gave me!
A few hours passed, me and mommy were just exhausted.
_
Mommy was worried, because I kept spitting up out of my nose. She kept pushing for them to make sure I was ok.
_
The nurses finally took me to be evaluated and when they brought me back they told mommy that they suspected I had Cornelia deLange
Syndrome (a developmental disorder that affects many parts of the body. The severity of the condition and the associated signs and symptoms can vary widely, but may include distinctive facial characteristics, growth delays, intellectual disability and limb defects).
_
Mommy had no clue as to what was going on, she never showed me any different. She still gave me the same cuddles as she was before!
Now I’m 6 months old! Still cuddling with my mommy, daddy and my big brother and sister! 💜 #corneliadelangesyndrome

I will never forget that visit on May 18, 2017. I was 20 weeks pregnant and we were going to have our anatomy ultrasound. During the ultrasound, everything was looking great, we had a beautiful healthy baby boy! We were so thrilled. She then told us she had to go get a doctor so we could discuss the ultrasound. That was kinda weird, but we really weren’t worried. Then she came in and told us our baby didn’t have anything below his right elbow and his left arm only had 1 bone in the forearm, when it should have 2. I wasn’t really upset, I didn’t even cry. I really just felt guilty, like it was my fault. What did I do wrong?
God gave me so much strength, and told me my baby is going to be ok. So I just turned it over to Him. -
While I was pregnant, my spouse and I kept going back and forth with names. We just couldn’t agree on anything. His middle name must be a “Z” name, so that in itself was difficult. My spouse said, let’s name him ZEE! I loved it! Now, what should his first name be?? I searched and searched, the name Gabriel just kept standing out. I looked up what the name meant and the meaning was “God is my strength”. So it was settled! Gabriel Zee, expected due date October 14, 2017. -
Throughout my pregnancy, we watched him grow. He stayed kinda small, but I’m only 5 foot, so no one seemed too concerned. He was just gonna be short like his momma.
I went to the doctor on September 19, it had been about a month since our last growth ultrasound and he had only gained 4 ounces! So the doctor decided to go ahead and schedule for induction to be September 20. I was so scared now. I had to keep praying, I didn’t want to give my baby any unneeded stress. -
We went in about 10:30 am, on September 20, 2017. After hours of extra complications and finally getting to start the induction, He came on September 21, 2017 at 1:19 am! I was so relieved! He was here, he was breathing, he was crying! They said everything was great!
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(Cont. in comments)

Head on over to one of our favorite accounts @littlest_warrior to read our story on their website 💙

#Repost @littlest_warrior with ・・・
Meet Jordan Grace! #littlestwarriorwednesday
Our four year old started asking for a baby sister, every night she would ask God to send her a baby sister during our family prayers. My husband and I began trying, we were ready to add a little one to complete our family. It wasn't as easy as our first pregnancy, we tried for months, the stress overwhelmed me. I was thinking maybe our family would not be able to grow.
That sweet day came, and we were finally expecting. We were thrilled and sharing our news with everyone! We didn't wait the 12 weeks to share our great gift on the way with all our friends and family.

Our Ana Maria would kiss my growing belly and share with us how much she already loved the baby. We would wait to find out if she was going to have a brother or a sister. She was a surprise herself.
At 20 weeks, we drove to the lab to see our precious little miracle on the way. The car ride was filled with laughter and song.
While laying patiently to get all the official pictures, I kept chatting away with the technician who seemed quiet and focused. When she was finished she said she would be back in a little while with the doctor.
Greg and Ana Maria came in and we waited patiently to see the baby again, the fun way this time. We had no idea our world was about to change; in that instant there would be a before and after in our lives.

The doctor came in and told us the baby had a heart defect. Tears immediately burned down my cheeks and continued to flow down my shirt. Then I felt the room spinning, too much information I couldn't retain, I stopped listening and began to worry. Would I lose the baby? Could I walk carefully enough to not fall and hurt the baby even more?
I couldn't breathe or speak. I'm sure I sobbed loud enough to scare my precious daughter, the big sister to be, who was so looking forward to having a baby to play with. My first words were "is it a boy or a girl?" We were having a baby girl, God had answered my little one's prayers, but with conditions. Devastation filled my soul.

Meet Jordan Grace! #littlestwarriorwednesday
Our four year old started asking for a baby sister, every night she would ask God to send her a baby sister during our family prayers. My husband and I began trying, we were ready to add a little one to complete our family. It wasn't as easy as our first pregnancy, we tried for months, the stress overwhelmed me. I was thinking maybe our family would not be able to grow.
That sweet day came, and we were finally expecting. We were thrilled and sharing our news with everyone! We didn't wait the 12 weeks to share our great gift on the way with all our friends and family.

Our Ana Maria would kiss my growing belly and share with us how much she already loved the baby. We would wait to find out if she was going to have a brother or a sister. She was a surprise herself.
At 20 weeks, we drove to the lab to see our precious little miracle on the way. The car ride was filled with laughter and song.
While laying patiently to get all the official pictures, I kept chatting away with the technician who seemed quiet and focused. When she was finished she said she would be back in a little while with the doctor.
Greg and Ana Maria came in and we waited patiently to see the baby again, the fun way this time. We had no idea our world was about to change; in that instant there would be a before and after in our lives.

The doctor came in and told us the baby had a heart defect. Tears immediately burned down my cheeks and continued to flow down my shirt. Then I felt the room spinning, too much information I couldn't retain, I stopped listening and began to worry. Would I lose the baby? Could I walk carefully enough to not fall and hurt the baby even more?
I couldn't breathe or speak. I'm sure I sobbed loud enough to scare my precious daughter, the big sister to be, who was so looking forward to having a baby to play with. My first words were "is it a boy or a girl?" We were having a baby girl, God had answered my little one's prayers, but with conditions. Devastation filled my soul. I trembled as I excused myself.... To continue reading, click on the link in our bio and scroll down for the blog❤️

Meet Lia! #littlestwarriorwednesday
Lia was born full term after an uncomplicated pregnancy. Shortly after birth, Lia began having seizures. The following day an MRI revealed that Lia had suffered from a stroke in utero. Doctors also discovered that she was born with two congenital heart defects, #pulmonarystenosis and an #atrialseptaldefect. Lia had heart surgery at just three months old. Her stroke has also resulted in further diagnoses of #cerebralpalsy, #epilepsy and #apraxia of speech, Lia is non-verbal. Despite the challenges she faces daily, Lia is thriving. She is brave, determined and strong. Lia is the happiest child ever. She always has a huge smile on her face and a twinkle in her big blue eyes. No one loves life more than Lia! @life_with_lia_ #spreadawareness #inuterostrokesurvivor

Meet Millie! #littlestwarriorwednesday
We adopted our amazing little girl through the Down syndrome adoption network. She's the best part of our every day and spreads joy more than I even knew one person could.
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Millie just turned two and has taught us so much about choosing joy and seeking contentment in every stage of life (through heart surgery, feeding tubes and unexpected medical problems). _
I knew I wanted to adopt a child with Down syndrome since I was about 12. When my husband and I started dating, I told him not to get serious about us unless he wanted that too. It was beautiful to watch him give up the "healthy/easy" life he pictured and watch in fall madly in love with our daughter, long before we ever met her. -Bekah Behnke @bekahbehnke
Special Needs Ministry Facilitator
ccochurch.com
Luke 14:23
Compel them to come in #downsyndromeadoption

#littlestwarriorwednesday is back! Thank you for your patience as I healed from my accident that broke my pelvis back in September ❤️
Here is part of Carter's story, to read the rest, click on the link in our bio
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"Even though no parent wishes for their child to have a genetic disorder, we knew that there was NO possible way we could ever imagine Carter without these characteristics. We had loved and cared for him, wholeheartedly, for two years already. His diagnosis did not change a thing. This is Carter. He is the boy that lights up a room with his smile and voice. He is the boy that blows the secretaries at his daycare kisses as he leaves for the day with his Mama. He’s the boy who loves to mimic monsters and has his mama and daddy playing monster too, out in public. Carter has overcome so much. Lab draws, diagnostic tests, doctor’s visits in and out of town, and weekly visits from multiple therapists. ADNP does not define Carter, Carter will write his definition of ADNP. Carter will write his very own story." #adnpkids

#Repost @littlest_warrior (@get_repost)
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#littlestwarriorwednesday Meet Colton! Colton was not a very active baby in utero. However the Dr's all said he was developing fine and nothing seemed "wrong". He was my first and only biological child (we have since fostered and adopted our daughter). Colton was born on 12/27/2010 after a very difficult 36 hours of labor. He had great APGAR scores (9 & 10). However he was making odd breathing sounds. I had asked a nurse if Colton's breathing was normal and she said yes. Colton was not nursing well and continued to make odd breathing noises. However the NICU dr came by the postpartum room and said he was good. The postpartum nurses would come check on us every 2 hours and they said he was fine as well. What does a brand new mom know? I was so trusting of the medical professionals...10 hours postpartum we had a relief nurse come do our vitals. She asked me if Colton had been breathing like this the whole time. I said yes, however I spoke up. I said I had been worried about it but everyone including the NICU Dr said it was fine. She tried to reassure me that sometimes babies have some "phlegm" in their throats and can not clear it which is why the breathing sounds bad. My new mom senses knew something was wrong and when our nurse returned from her break I spoke up again. She took Colton down to the nursery and did a pulse ox test. He was at 98% which was good. She had brought him back up to our room and said that after spending some time with him down in the nursery she does agree his breathing sounds suspicious. She said she needed to go do her rounds and in 10 minutes would come back. If he was still breathing like this she would take him back down to do another test. Looking back I wish I would have told her to go do it now! Why she even came back up with him in the first place is beyond me if she was suspicious. She did come back 10 minutes later and took him right down. After about 30 minutes she came back into our room with a Dr. They said they did a chest x-ray and Colton had a pnuemothorax (hole in his lung). He was admitted into the NICU. The explanation for why it wasn't caught was because...see comments

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