#muenkesyndrome

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Synostotic Plagiocephaly. This is when your cranial bones are fused causing a flat part on a certain side of the skull. Claire has left cranial synostosis. Her bones were fused in-utero. They were unable to find out why. We had to have genetic testing done to rule out Muenke syndrome; this disorder can cause hearing disabilities, learning disabilities and developmental delay. We had hearing tests done, genetic testing and physical examinations. What a wonderful day when we found out she did not carry the gene! This meant that neither did we and our future children would not have any chance of getting it! These moments you go through are absolutely terrifying, but at the time, I think we were numbed by the possible outcomes. Now looking back, wow how lucky we are to have such an intelligent and beautiful young lady to share life with! And we realize if she HAD of been diagnosed with it, she would still be the most intelligent and beautiful little girl to us. For those parents that don’t get the good news on the other side of tests....my heart goes out to you! Regardless of the outcomes though...there is so much beauty in these little ones❤️ carry on and teach them to be all that they can be☀️———#leftcoronalsynostosis #plagiocephaly #babieswithhelmets#babyhelmets #orthopedichelmet #thegirlinthepinkhelmet#pinkhelmetpublishing#childrenshealthawarness#bccf#bcchildrenshospital #bcchgenetics#staystrong#sickkids#childrensbooks#childrensbookauthor#myfirstbook #muenke #muenkesyndrome

*Travailler avec ces deux filous dans la maison..
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.. La pluie dehors et le papa qui s'arrache les cheveux avec les activités
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..Les retrouver dans le couffin en osier
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.. Hâte d'être en vacances en même temps que ces 3 là !
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.. #mumpreneur #bienveillance #vacances #viedemaman #muenkesyndrome #muenke

Long week in Temple Street for Sara, extensive testing and examinations every day. Fantastic staff, big respect. Planning for surgery can begin 👍 #craniosynostosis #muenkesyndrome

Why blend in when you were born to stand out #MuenkeSyndrome #Craniosynostosis

Life is tough my darling, but so are you ❤️ #muenkesyndrome #craniosynostosis

He offered to carry the bag for the zoo, for a whole 2 seconds 😂 also got his hair cut today, his zig zag scar is on point. .
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#craniosynostosis #muenkesyndrome @ospreypacks @sandiegozoo #surgery #familyday #zooday #sandiego #touristlife #paradise #california #muenke #scars #family #kids #funday #sundayfunday

Neurosurgery ✔ Time for some Donkey Kong 😂 hes recovering great, he should go home tomorrow :) his body was rejecting the fake bone they used for his skull so they had to remove it and do a bone graft. Hopefully it sticks! .
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#neurosurgery #nailedit #balboa #sandiego #bonegraft #surgerysucks #recovery #arcade #games #postsurgery #landonstrong #hero #strong #plasticsurgery #healing #craniosynostosis #craniokid #muenke #muenkesyndrome #rare #skullsurgery #futuredoctor #militarybrat #usmc

Pre Surgery treat at the Hospital. It's amazing how strong this little dude is and the questions hes asks his neurosurgeon. On another note, his recent obsession is Christmas 😂 so he made sure to set his christmas list list before he went to bed tonight. Although, I think he is secretly hoping to capture the elf... .
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#muenkesyndrome #muenke #hero #surgery8 #myhero #strong #craniosynostosis #craniokid #mcdonalds #garmin @garmin #garminkids #onedayatatime #cranio #craniokids #sandiego #neurosurgery #balboa #nmcsd @mcdonalds #happymeal #hospitallife #anotherday #staystrong #neurosurgeon #plasticsurgeon #craniofacial #happy #mykiddo #christmas #elf #elfontheshelf

Such a FUN family day at the Marine Base ❤ landon's first step to getting over his fear of heights. He wouldn't do the big zip line today but this is a step in the right direction. Great fun day before an upcoming surgery next week. #usmc #familyday #marinecorpsfamily #milso #familyfun #familytime #adventurer #intraining #minime #kids #militaryfamily #military #superhero #muenkesyndrome #craniokid #craniosynostosis #sandiego #sunny #sunnysandiego #hooooooooot

We have hit Adelaide which holds a very special place in our hearts thanks to this Man, Professor David, Craniofacial Surgeon who operated on Harley 3 years ago. We had our annual checkup on our way through and our last visit with Prof as he is now retiring, which is the end of an era!! May I also mention he was South Australian of the Year?! #craniosynostosis #craniokid #coronalsynostosis #muenkesyndrome #adelaide #northadelaide

Nunca hablo de ella pero es mi MILAGRO, mi estrella, mi luchadora, mi valiente, mi regalo! Tengo que dar gracias cada día por la suerte que tengo! Tq eres la mejor del mundo!#mymiracle #muenkesyndrome #mimilagro #miestrella #mydaughter #ereslomas #valiente #luchadora #campeona #orgullodemadre #lomejordemivida

Maya Ann had #distractors placed in her #skull to make room in her skull for #craniovaultremodel which will happen within the next six months. She has #muenkesyndrome with #craniosynostosis. This has been a hard month for me although she is amazingly strong and doing amazingly well. I have been and will continue turning those distractors for another two weeks twice a day. #lordgivemestrength #myhearthurtseverytime

This is my Maya Ann. Maya Ann was born with bi-coronal craniosynostosis and later diagnosed with Meunke syndrome. She had skull correction at 9 months of age. The bottom right was taken when she was three years old. Maya Ann is now five and will face three major skull surgeries the first will be next week to place skull distractors after turning those distractors twice a day for 15 days she will have another surgery to remove the outer part of the distractors. After six months or so she will have the last of the three surgeries to move the skull and refine her forehead and facial features.

Proud of my little man, off to kinder he went 🙌🙌🙌 Those that know him will know how how exciting this is, he is overcoming speech & developmental delays like a champ 👌 #icandoanythingyoucando #craniokid #craniosynostosis #muenkesyndrome

One happy boy! Tonight a special prayer warrior came to visit my son and brought him something really special. She made all of this for my turtle.
I had never met her before... We have been Facebook friends for sometime now and we met through one of my free challenge groups.
My fitness posts and free challenge posts may annoy you but getting the opportunity to come across people like Maria just reassures me that all of this has a meaning and value.
I made a new friend and my baby has an amazing prayer warrior on his side. God never ceases to amaze me.
I cannot even express how meaningful this is to me. Thank you Maria to you and your sweet boys.
#blessed #ninjaturtle #cranio #craniosynostosis #craniokid #muenkesyndrome #beachbody #beachbodycoach #coaching

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