#crainiosynostosis

MOST RECENT

We are officially on the other side , today has been a long one. One that we will certainly never forget. Our little Logie bear was the bravest bear of them all he endured around 5 hours of surgery and did like a boss. He is truly my hero 💙💜 Our little bear is resting now and doing great ! We are hoping to go home either tomorrow or the next. In mean time bye bye Sagittal fuse , we loved you because you were on Logie but now that your removed .... we don't need ya !!!! #forlogiebear #badassbaby #JLSQUARED #crainiosynostosis #BYEBYESAGGITAL

Babies are 1 month corrected today. This picture captures them perfectly. Reese is screaming, Andrew is chill and Alexander is trying to poop.
#1month #triplets #babies #preemies #28weekers #1monthcorrected #rainbowbabies #chdbaby #crainiosynostosis #fullheart #blessed #lovebubs #aspireforasherj

We’re going to have to ask for your thoughts, prayers, positive & healing vibes. Parker is having surgery tomorrow because her skull has prematurely fused. So please keep all of us in your thoughts. We luckily are going to a wonderful children’s hospital & have amazing plastic surgeon & neurosurgeon doing the operation, but that doesn’t ease our worry nearly enough. But Parker is a strong, otherwise healthy, & happy girl, so we know we’ll get through this. #parkerfinch #lovemydaughter #crainiosynostosis

Sometimes you just gotta put your head down and walk through the fire... Winning the mental game is tough for me sometimes so I try to surround myself with a good circle of friends who believe in me... Thank you... #submitthestigma #elitesports
#showtime #AMBJJ #blessed #ambjj #referee #advocare #faixaroxa #roll #bjjtees #bjjlifestyle #family #heybuddy #bjj #family #believeinyourself #faith #ambit #faixamarrom #fighttowin #scentcy #forgiveness #crainiosynostosis

We are home! Got some Tylenol in our blood, popcorn in our belly, and #Coco on the tv. A happy camper at the moment. #crainio #crainiosynostosis #skullsurgery #day3

The IVs are all gone and the doctors said, go home! Don’t have to tell us twice! We out!
Recovery is expected to speed up once he is back in his environment at home so we are excited to get back to that. He is already sleeping better than in the hospital now that all the poking and prodding and beeping is gone. Face may be huge but we are good!

Thank you to everyone who prayed for him, fed us while in the hospital, came to see us and distract us during the surgery, commented or sent us messages. You really made this so much less stressful. We still have a long way to go though so don’t stop now! We should be home tomorrow so that will help but they don’t expect him to be able to open his eyes until Saturday at the earliest. Swelling will take a week or two to go away. The girls will be great help and he will be excited to get back to normalcy.
Thank you to the incredible Dr. Hobar @hobarplastic and Dr. Sawvel @sawvelm and your staffs for being truly remarkable. You were an absolutely God-send. I wish I could adequately express my thankfulness to you. You cared for our son as so much more than just another patient. Your expertise was greatly appreciated but even more your calming spirits and love that you showed us was incredible. You worked us in when we didn’t have appointments, you didn’t charge us what you could have, you fought insurance for us, you prayed with us before surgery, and you held our little boy’s life in your hands and did not take it lightly. I will never be able to repay you for that. We have been truly blessed by the “random” string of life-altering events that led us to you. I will thank God for the rest of my life for that. I can’t even stop the tears from flowing thinking of how you took care of us and will continue if needed. Thank you to all the nurses, Christy, Alanna, Kelsey and Rob, that took care of us post-surgery and kept Kendrick safe and healthy. You all were amazing in spite of our constant questions and needs.
Thank you again and again and again, a thousand times over.
#crainio #crainiosynostosis #skullsurgery #crainiowarrior #warrior

So we finally made it out of the PICU and now have our very own hospital room! KD got his bandages off and all his lines except for the IV he has to keep on the whole time he’s here in his ankle. He’s super swollen and doesn’t even look like him. He is very aware although he cannot see right now. Keeps feeling his nose and face trying to figure it all out. And he is finally sleeping better! Thank you for continuing to pray for our lil man as he recovers! #crainio #crainiosynostosis #skullsurgery

Thank you to every one of you who have been praying and texting all day. It means the world to us to know how loved our little man is. It’s been a rough day. We are on the other side of the surgery so that’s great but the road to recovery this week will be long. He is strong and fighting all the lines on him. He has only been able to sleep on mon or dad since about 4:30 until a little while ago. Hopefully the doctors will find the right dosage for him to let him rest. Thank you for your continued prayers for Kendrick. #crainio #crainiosynostosis #skullsurgery #warrior

This big man is done with surgery and everything is being wrapped up. Doctors said everything went great and they are very happy. Thank you so much for all the prayers. Now we can shift all our prayers to his recovery. Thank you, thank you, thank you! 🙏 #crainio #crainiosynostosis #skullsurgery

Missing my little man right now. Still in surgery right now. At least it brings a smile to my face. #crainiosynostosis #skullsurgery #crainio

Taking a photo with this little guy has become increasingly difficult. He just wants to be free and running around everywhere! 😆
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Nonetheless, I’m enjoying the extra time I get to spend with him today. Took the day off from work to take Seb to see his Ophthalmologist. Dr. said he has a slight drift in his left eye, but nothing to be too concerned about.
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We will see him again in 6 months. Hoping his growth and cranial development are as normal and symmetrical as possible. 👏🏼
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#mommyandsontime #crainiosynostosisawareness #crainiosynostosis #craniomom #boymomma #fitmomma #toddlerlife #nophotosplease #wednesdayhumpday #happywednesday #iwatchseries3 #tiffanyandco #sunnies

Trip number 9 to sick kids is complete. Ava is currently obsessed with being a doctor and sick kids sells real scrubs for kids...so we now have official dr. Ava in the house👩🏼‍⚕️Ollie is wearing a sock on his head that is part of the head scans he has once a month to monitor the growth of his head. Just like everything else that gets thrown at this kid he does it with a smile on his face. 👶🏼 #crainiosynostosis #hiimdoctorava

About a month after her surgery for crainiosynostosis, Evelyn got a helmet to continue shaping her head, and to protect that scar across the top of her head. We took the opportunity to style her up with a MacKenzieChilds inspired helmet! .
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#babiesofinstagram #helmet #helmetbaby #crainiosynostosis #metopiccraniosynostosis #throwbackpic

I still sit and sob on what we have all been through and when I look back through my pics it brings home just how incredible this little guy has been ... we are part of a family of #craniowarriors and my little superhuman will have friends for life ... i feel the luckiest momma, I have the most brave clever unique boy and i am so so proud (crying again 🙈🙈) he may have his difficulties but he's here he's happy and I will spend the rest of my life making sure it stays that way!! #crainiosynostosis #craniofacial #craniobaby #crainiowarrior #mylife

Nice beanie matey 🤕
Surgery today was a success, now we wait in PICU while you recover.
#Jackson, #surgery, #crainiosynostosis, #jman, #brave, #strong, #inthebestcare

My reason for all that I do!

So last night while I was doing my workout, Seb would start crying every time I took a resistant loop away. 😂 He wanted to workout with me and wanted the loops all for himself.

I’m glad to be teaching healthy habits and self care, but momma needed those loops.

I need to have the strength, energy and endurance to keep with this little guy because he is go,go, go from the moment he wakes up.
Today though, I will need to be emotionally strong as he goes in to surgery to have his cranial distractors removed.
We are thrilled to be having his distractors removed, but having an idea of what is in store for him, makes me so nervous. Last time he had surgery, was more severe, but I think not having experienced something like that before there was a sense of calmness.
I know he will be in good hands. With Gods grace, his angels protection and the experience and knowledge from the team of doctors working with him, he will come out of this safely.

I ask for extra prayers though. The power of prayer is powerful and I would greatly appreciate them. .
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#SebastianNixon #mylovelyboy #crainiosynostosis #crainiosynostosisawareness #cranialdistractors #removal #fitmomma ##selfcareeveryday #boymomma #80dayobsession #countdowncontest

⚡️ This is your reminder ⚡️ Don’t give up. What are you working on? What are you tempted to stop? What’s weighing on you as the year comes to an end? Fitness goals? Work? Family? Friends? ⚡️ This is your reminder. Don’t give up. ⚡️ Last week my son had surgery on his skull and brain. My family has been through a lot of stress this year. There’s that little voice that says just give up. Give up on my goals, my dreams.
No matter what you’ve been through this year Philippians 3:13-14 says “Forget what is behind and straining toward what is ahead. I press on toward the goal to win the prize for which God called me heavenward in Christ Jesus.” Don’t listen to that voice of defeat. Choose to listen to the voice that says fight. Win. Don’t give up.
#dontgiveup #fight #fitness #behealthybehappy #momoftwo #momof2 #crainiosynostosis #family #goals #faith #godisgood #dreams #faithandfitness #presson #mondaymotivation

Always count your rainbows not your thunderstorms 🌈

Proud Mum ❤

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