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#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

#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...continued in comments

#littlestwarriorwednesday
Meet Evelyn!
Evelyn will be 4 in October. She was diagnosed in January with POLG related #mitochondrialdisease Mitochondria are little structures throughout the body that work like batteries to give our cells energy, and POLG is the gene that tells the body to make more mitochondria. Mitochondrial disease comes in many forms, most of which attack the body's major systems like the heart, brain and liver.
Mito kills more kids each year than cancer, and there's no treatment or cure. Right now, Evelyn's health seems to be stable but we live on pins and needles not knowing what the next day will hold. We are desperate for awareness and a cure. #mitochondria #mitowarrior #spreadawareness #findacure

You can find us on Facebook @lovingevie

It's time for #littlestwarriorwednesday Meet Eli! "We adopted our son, Eli when he was 7 weeks old, after his staying in the NICU. He was born 4 weeks early and under drug exposure. He was diagnosed with #AngelmanSyndrome when he was 1 1/2 years old. We've been through hospital stays, seizures, therapies and severe delays but you couldn't tell that when you meet Eli. His smile doesn't leave his face. As far as he's concerned, his life is amazing. He loves his people, swimming, Ellen Degeneres and watching cartoons" #spreadawareness #angelman

#littlestwarriorwednesday is going great and I would love to keep spreading awareness! If you would like to share your child's story please email me at michelle@littlestwarrior.com ❤️ Tag a friend if you think they'd like to participate! #spreadawareness #awareness

#Repost @littlest_warrior
Meet Piercen! #littlestwarriorwednesday
Piercen was born with Spina Bifida. At 18 weeks in utero we found out about Piercen's SB. He is definitely our Holland Tour Guide! We were encouraged several times to terminate, but we chose life for Piercen. He was born at 39 weeks and spent the first 21 days of his life in the NICU. He has had 7 surgeries.He is a hydro warrior (we have that shirt too...hehe) and currently has a shunt to control his hydrocephalus! He is paralyzed from about the 3rd rib down. We were told he would have little to no quality of life, but boy has he proven several to be wrong! He uses a wheelchair to get around and he LOVES it! He is so full of life, spunk, and fun! He reminds us daily to CHOOSE JOY! He loves his older Sissy! Loves superheroes and fishing! He just turned 3! He is a fighter!!!!

Meet Piercen! #littlestwarriorwednesday
Piercen was born with Spina Bifida. At 18 weeks in utero we found out about Piercen's SB. He is definitely our Holland Tour Guide! We were encouraged several times to terminate, but we chose life for Piercen. He was born at 39 weeks and spent the first 21 days of his life in the NICU. He has had 7 surgeries.He is a hydro warrior (we have that shirt too...hehe) and currently has a shunt to control his hydrocephalus! He is paralyzed from about the 3rd rib down. We were told he would have little to no quality of life, but boy has he proven several to be wrong! He uses a wheelchair to get around and he LOVES it! He is so full of life, spunk, and fun! He reminds us daily to CHOOSE JOY! He loves his older Sissy! Loves superheroes and fishing! He just turned 3! He is a fighter!!!!

#littlestwarriorwednesday Meet Marshall! He is incredibly kind, compassionate, artistic, loves all things space and science- he also happens to have apraxia. #apraxia is a neurological disorder; basically the signal from his brain gets a bit scrambled on its way to his lips, jaw, and tongue. He knows what he wants to say and has no cognitive delays but he has a hard time with talking and eating.
Marshall is our oldest child, our first baby. So when I couldn't breastfeed him- even with the help of a lactation specialist- I chalked it up to being a first time mom. Little did I know this was the first signs of my little guy struggling.
As he got older, we noticed other children starting to talk but Marshall did little more than grunt and cry. I started to become suspicious but others told me I was being paranoid. "My nephew didn't talk until almost four and then one day he woke up speaking in perfect sentences!" "You're just being a paranoid first time mom!" "Einstein didn't talk until four!" "Well do you read to him? Talk to him!" Despite what family and friends said, all the alarms were sounding in my mama brain. When I looked into my son's eyes I could see he wanted so badly to communicate but all that would come out were grunts followed by frustrated tears. I had Marshall evaluated and at 27 months old he had the verbal ability of an 8 month old. It broke my heart and I wept over that report. I felt like such a failure and, I have to tell you, nothing hurts quite like feeling like you failed your child.
Marshall is now almost six years old. His teacher (in a "mainstream" classroom) says that he is one of the brightest students she's ever had. While he is at the top of his class cognitively, he is at 40% verbal ability for his age. He has come home in tears from being bullied, he feels embarrassed when he needs to be taken out of the classroom for Speech (due to the bullying, he believes this makes him "stupid"), he understands everything being said but still full grown adults think that verbal ability equates to cognitive function and so they talk down to him or ignore his attempts to communicate. Continued in comments

#littlestwarriorwednesday Meet Oaklynn!
Our amazing 7 year old daughter, Oaklynn, has Rett syndrome. She was born typical and met all her milestones. At around 12 months old we noticed things slowly changing. She wouldn't hold her own bottle and had a hard time feeding herself. She slowly started to loose skills until she lost everything. No longer able to even crawl or use her hands to pick up a toy. She was finally diagnosed with Rett Syndrome at 21 months old. Rett Syndrome is a unique development disorder that is almost always in girls. It is caused by mutations on the X chromosome on a gene called MECP2. It occurs worldwide in 1 of every 10,000 female births. Rett syndrome causes problems with learning, speech, sensory sensation, mood, movement, breathing, cardiac function, chewing, swallowing, and digestion. Kids with Rett Syndrome also experience dystonia, anxiety, stereotyped hand movements, teeth grinding, sudden death while sleeping, scoliosis, feeding problems that may result in a Gtube, seizures, GI problems, sleeping problems, apraxia, and more. Kids with Rett Syndrome also can't regulate their body temperature. They over heat very easily. They don't sweat to cool themselves down so they can get heat exhaustion quickly. Oaklynn is an amazing little girl. She needs total care as she can't do anything on her own. We visit the hospital quite often and she actually likes it there. Many nurses and doctors know us by now. She has amazing eye contact and is able to communicate with you by just using her eyes. She understands everything that is going on. She has the brain of a typical 7 year old. She is very smart. She is literally just trapped inside a broken body. If you know a child with Rett Syndrome, talk to them as you would a typical child their age. You will see them light up and give you a smile you will never forget. @special_needs_mama #rettsyndrome #specialneeds #mysilentangelsfight #rett #spreadawareness #careaboutrare

#littlestwarriorwednesday Meet William! William has Pearson Syndrome, a very rare and often fatal mitochondrial deletion disorder. He was red blood transfusion dependent until 14 months. He has yet to experience other symptoms of Pearson Syndrome (pancreatic/heart/liver failure, lactic acidosis, hearing and vision problems, etc), but likely will unless researchers and doctors can learn more about the disease and how to alter its course. We started The Champ Foundation with a mission to fund researchers interested in finding treatment and a cure for Pearson Syndrome. In two years, we have funded nearly $400,000 in research grants to doctors around the world working to find a cure for this terrible disease. We are hopeful and enthusiastic about the possibility of these research projects to find a cure in time to help kids like William. #spreadawareness @thechampfoundation #thechampfoundation #champstrong #pearsonsyndrome #mitochondrialdisease

#littlestwarriorwednesday
Meet Naylah
Naylah was diagnosed with trisomy 5q when she was a little under 5 months old.
Naylah is the only one we know of with trisomy 5q.
Trisomy 5q has given Naylah a global delay , non verbal , a feeding tube and heart issues.
But it also gave her the kindest of hearts and an amazing soul. Her love is amazing, her smile and her strength always amaze me. She has had countless surgeries and procedures , weekly therapies but she does never put that beautiful smile away.
She is simply amazing! #trisomyawareness

Repost from @littlest_warrior @TopRankRepost #TopRankRepost #littlestwarriorwednesday Meg Apperson is the mom to a heart warrior boy, rambunctious red-headed toddler and perfectly, imperfect cranio baby. @meg_apperson
Avery was born with syndromic craniosynostosis. There are over 200+ known craniosynostosis syndromes that can be confirmed through genetic testing (including Apert's, Crouzon's and Pfeiffer syndrome), but we have yet to uncover Avery's - we completed three rounds of genetic testing and no mutation was ever found.
Her obvious facial differences were caused by premature fusion of the sutures between her skull plates while in utero. Because the "normal" development of her face and head was disturbed, Avery has many unique skeletal features. Her orbits (or eye sockets) are shallow and her midface and palate are small and "held back" in proportion to her lower jaw. Because her nasal passages are so constricted, Avery has a tracheostomy for safe and easy breathing.
Her ear canals are also very small and put her at great risk for hearing loss (she has none at this time). Because a baby's skull must remain pliable to give space for its rapidly growing brain, the immediate concern with craniosynostosis is the pressure on the brain as it grows. When the skull has run out of room, the brain can suffer severe damage from ICP (or intracranial pressure). Avery's skull has been cut open and reconstructed numerous times to give her brain room to grow and a shunt drains fluid that may become obstructed in the ventricles surrounding her brain to the open cavity in her abdomen (she was born with obstructive hydrocephalus due to the limited space in her tiny skull). Her shunt has failed on numerous occasions, once, driving her into a coma as the pressure on her brain burned out her optic nerves and induced seizures.
Despite all this Avery continues to exhibit normal to advanced levels of intelligence. She speaks, despite her tracheostomy, follows directions, expresses opinions and memorizes books and songs almost instantly.
Her most significant delays are gross and fine motor skills.

#littlestwarriorwednesday is going great and I would love to keep spreading awareness! If you would like to share your child's story please email me at michelle@littlestwarrior.com ❤️ Tag a friend if you think they'd like to participate!

#Repost @littlest_warrior (@get_repost)
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Meet Chiara! #littlestwarriorwednesday "Our diagnosis started off with Talipes (Clubfoot) which is a common treatable condition, although it was a challenging process with a newborn!
5 months later, after some additional testing Chiara's diagnosis suddenly became serious.
I'll never forget the day the phone rang and they asked us to come into the hospital immediately. I carried her little body into the room and held her close to my heat, as they delivered the news.
I remember the rain falling outside the hospital window. I remember hearing so many long medical words and phrases. I remember feeling like it was all just a bad dream and that I would wake up. I remember feeling a grief that I had never known until that day.
"I'm sorry Natalie, your daughter has a very serious brain-injury", they went on to explain the 'science and medical information' but I just shut down. I couldn't really take in all in, nor did I want to.
"It is unlikely that Chiara will ever walk or talk and life expectancy is significantly shorter due to the severity of her brain damage"
- Bilateral Perisylvian Polymicrogyria
- Microcephaly
- Developmental Delay
- Talipes
- Non-verbal.
I walked out of the hospital in complete shock..
But then something happened that made me pause, a brilliant rainbow shone through the dark grey sky. I literally stopped and made a pact with the universe to never give up...
That small moment provided a huge source of trust and faith for me, as my parenting journey has unraveled.
Yes the tears still flowed, then the sob's of deep sadness followed for months after. It took me so long to come to terms with her diagnosis and what that meant for her life, and all of us as a family.
Fast forward four years later Chiara is doing brilliantly, yes she has huge physical limitations, yes she is unable to talk (yet!), yes it has been incredibly tough. But wow, what an honour it is to be her mum.
I wanted to specifically share our day of diagnosis, so other families can rest in the awareness that even after the most devastating news, so much good can follow.
Life has never ever been more miraculous.
.
.
.
#miraclemama

Meet Chiara! #littlestwarriorwednesday "Our diagnosis started off with Talipes (Clubfoot) which is a common treatable condition, although it was a challenging process with a newborn!
5 months later, after some additional testing Chiara's diagnosis suddenly became serious.
I'll never forget the day the phone rang and they asked us to come into the hospital immediately. I carried her little body into the room and held her close to my heat, as they delivered the news.
I remember the rain falling outside the hospital window. I remember heading so many long medical words and phrases. I remember feeling like it was all just a bad dream and that I would wake up. I remember feeling a grief that I had never known until that day.
"I'm sorry Natalie, your daughter has a very serious brain-injury", they went on to explain the 'science and medical information' but I just shut down. I couldn't really take in all the information, nor did I want to.
"It us unlikely that Chiara will ever walk, she will not be able to talk and life expectancy is significantly shorter due to the severity of her brain damage"
- Bilateral Perisylvian Polymicrogyria
- Microcephaly
- Developmental Delay
- Talipes
- Non-verbal.
I walked out of the hospital in complete shock..
But then something happened that made me pause, a brilliant rainbow shone through the dark grey sky. I literally stopped and made a pact with the universe to never give up...
That small moment provided a huge source of trust and faith for me, as my parenting journey has unraveled.
Yes the tears still flowed, then the sob's of deep sadness followed for months after. It took me so long to come to terms with her diagnosis and what that meant for her life, and all of us as a family.
Fast forward four years later Chiara is doing brilliantly, yes she has huge physical limitations, yes she is unable to talk (yet!), yes it has been incredibly tough. But wow, what an honour it is to be her mum.
I wanted to specifically share our day of diagnosis, so other families can rest in the awareness that even after the most devastating news, so much good can follow.
Life has never ever been more miraculous since Chiara arrived in our world"

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