Maddox’s craniosynostisis journey

12 DAYS POST-OP - fresh pictures from after his bath tonight.

Maddox had his first follow up appointment with his neurosurgeon and he said everything is looking great so far😁 Just need to continue to rotate applying Vaseline, Baby Aquaphor, and Medihoney 4 times a day for the next month. (That’s why his incision looks goopy. It’s not infected just covered in protectant to help prevent any infections from occurring.)

We’ll be following up once every month for the first few months, then he will have yearly check ups until he is 18 to make sure his head and brain continue to grow properly.

Hello to our cranio community!
This is the MEDICAL UPDATE y’all have been waiting for.

Maddox is now 8 DAYS post-op.

The operation went as good as it could have gone according to both the neurosurgeon and plastic surgeon. The operation happened on 5/1/2024 and lasted 6 1/2 hours and they did an incredible job on his new skull! Dr. Sun called at midnight after his operation (Maddox came out of surgery at 10:00PM) and told us that his brain was under so much pressure that when they began opening his skull that his brain was literally bursting out. Knowing he has been in so much pain for so long but carried on like nothing was wrong literally has broken my heart and kept me awake at night. This little guy is a trooper!
He needed 2 blood transfusions during his operation, more than they expected but thankfully they planned for any and every possibility of something going wrong and had the blood on hand. 🗣️MAKE SURE YOU DONATE BLOOD!!! Thank you if you do, you are LITERALLY SAVING LIVES!❤️
He spent 3 nights in the PICU recovering and won over all of the nurses with his beautiful blue eyes whenever they came in to make sure his pupils were still reactive. He has made a speedy recovery and since returning home is acting like nothing has happened and is back to going full speed.
This has been the hardest and most stressful 2 months of my life, all of this happened so quickly I haven’t had time to really process or grasp the entirety of all of this.
Thank you all so much for your support, it has truly been a blessing to have all of you being so generous with donations, offering to send us food while at the hospital, and your positive thoughts and words.

Post-Op: Day 2
The Dr came in at 7:30AM and removed his head wrap and we got to see the unveiling of Maddox’s new skull and boy is it BEAUTIFUL💜 his arterial IV has been removed, drain is removed, now we have 2 IVs left to remove. Little man is in great spirits considering all things.

We were FINALLY able to hold our little guy this morning🩶

Maddox is NOW out of surgery after 6 1/2 hours! Definitely the longest 6 1/2 hours of my life😭 They just pulled his breathing tube out and he’s still getting his blood transfusion but STABLE!!! Thank you all for your support

hospital staff was SHOCKED by how many people are here for baby Ox💜 We roll deep in this family💪🏻

And the wait begins…

Last minute snuggles. Hospital was running late so we’re starting the party now, SEND ALL THOSE POSTIVE VIBES!!!!

In pre-op. Send all of your positive vibes this guys way today💜

Maddox checking out the hospital. Here for lab draws for his blood transfusion. Tomorrow is the big day!

Enjoying the beautiful weather on this fine Sunday! Hope you all have had a great weekend💜

For those of you interested on how a “new skull” is constructed, check out the link. This is the material that was used to create Maddox’s new skull💜

Got to love all of the advances on modern medicine! The plastic surgeon said it should dissolve after 7ish months.

Scientists make plastic from sugar and carbon dioxide Some biodegradable plastics could in the future be made using sugar and carbon dioxide, replacing unsustainable plastics made from crude oil.

Surgery date has been moved up to May 1st!!!
So excited that my little guy will feel better.
On surgery day we wear PURPLE!!!!!!!

WE HAVE REACHED OUR GOAL OF $5,000! THANK YOU TO EVERYONE WHO HAS HELP MAKE THIS POSSIBLE!🥹

If you have donated and would like a cranio warrior bracelet please send a DM with your address as we would like to send you a thank you card as well💜

We love and appreciate ALL OF YOU!!!

After a stressful morning little man got to enjoy the nice weather by going for a walk on the riverfront and playing at the park🥰

Little man waiting for his MRI this morning

Taking advantage of the nice weather today and taking my bike for a spin!

We have our surgery date set!

I got home from work last night and went to check our mailbox. I opened the door and immediately began crying from all of the packages we’ve received for our sweet Maddox, your support has been nothing short of AMAZING!!!! We thank each and everyone of you especially our family members who sent the packages

💜Thank you auntie Tara and family, auntie Laura and family, auntie Steph and family, and last but not least great-aunt Bonita💜

Medical update:
Maddox gets an MRI next week to see how impacted his brain is currently. He will also have another appointment the week after to meet his plastic surgeon and neurosurgeon to discuss his “new skull” and start the mold for it! Once the mold is crafted which takes a month to make he will then have surgery. They’re looking to do surgery in late May or early June.

Please continue to send your positive thoughts and prayers to him as well as sharing his gofundme as we’re SO CLOSE to our goal!

Thank you for your continued support💜

My AWESOME babysitter took advantage of the nice weather and took me to the marina for a couple mile walk AND I got to stop at the park😁 Happy Wednesday!!!

Enjoying his blueberry muffin and a donut for breakfast this fine Tuesday morning, we hope you all have a great day today💜

WE’RE OVER HALF WAY THERE FOR OUR FIRST FUNDING MARK!!!!🥳🥳🥳 Thank each and every one of you who have donated to our son and his cause. The amount of love and support from family, friends, and complete strangers has been overwhelming to say the least. We are sooo appreciative and seriously can not thank you all enough! Please keep sharing so we can reach our goal!

Maddox’s Medical Fund, organized by Nicole Manassero Hello! We are Nick and Nikki, the parents of Maddox. We have created this fundraiser on behalf … Nicole Manassero needs your support for Maddox’s Medical Fund

Images to show what a normal toddler skull should look like vs what Maddox’s skull looks like. You can see he is missing some of the sutures (lines) in his head.

This operation should have taken place when he was an infant between 3-6 months, due to negligence of his pediatrician it wasn’t caught until he was 14 months old.

Hello everyone! A lot of you have reached out asking what other ways can be of help to us. We have created an amazon wish list of supplies Maddox will be needing after surgery. This includes a new wardrobe of shirts that we can button up, zip up, or whatever else way that doesn’t go over his head as it will be swollen and sore from surgery.

Maddox’s recovery needs - Amazon Gift List -

Maddox’s recovery needs | Amazon Gift List

Due to the amount of love and support we have received from the gofundme we have created a page for everyone to follow along with his journey.