A Day with the Children’s Complex Cranial/Facial Team!

Malakai has been such a trooper today. We arrived here at Children’s Hospital (Main campus) just before 10 AM.   We are here at children’s being seen all day by the complex cranial/facial team.

Today Malakai’s Schedule of specialist visits are as follows:

Outreach coordinator(Jamie Idelberg) ~ With the “WONDER” book and now the movie coming up, they have started a new outreach and they want Malakai to be a part of their “I am Auggie” outreach program to help those with Cranial/Facial differences to feel as special as they are!  They are planning on trying to do a Red Carpet night where all the kiddos in their complex cranial clinic will be able to dress up and walk the Red Carpet for an “Auggie Galla!” Children’s is amazing.

Psychologist

3DMD Photography

Speech Pathologist

Research Photography update (Kai is part of building a database of different rare syndromes that Drs. may not have ever seen to help diagnose in the future. )

Audiologist

Otolaryngologist (Dr. Allen*)

NeuroSurgeon (Dr  Wilkinson*)

Plastic Surgeon

Pediatric Dental specialist

Plastic Surgeon (Dr. French*)

ENT – Wasn’t able to make it as he was stuck in the OR; we were rescheduled for next Monday to see Dr  Prager for Kai’s post Op ENT apt.  We pray for those in the OR who are in need of the ENT today and we look foeforward are to seeing Dr  Prager on Monday.

* Named Specialists are Drs who have seen Malakai in the past.

Malakai had a blast with the 3D imagining enjoyed a feed and a nap during the specialists lunch time. 😍

IMG_6954IMG_6955IMG_6956IMG_6957IMG_6958IMG_6959IMG_6960IMG_6963IMG_6964

I can’t help to take and share so many pictures; I am just so in Love this sleepy guy! 😇💤😴

Malakai was diagnosed with Congenital CytoMegalovirus so Malakai’s Ophthalmologist, Dr. Braverman, and  Auditory wanted to make sure his sight and hearing wasn’t diminishing(which is sometimes the case with CCMV kiddos.)

* Insert from CDC.GOV*

“Women can pass CMV to their baby during pregnancy. The virus in the woman’s blood can cross through the placenta and infect the baby. This can happen when a pregnant woman experiences a first-time infection, a reinfection with a different CMV strain (variety), or a reactivation of a previous infection during pregnancy.

When a baby is born with cytomegalovirus (CMV) infection, it is called Congenital Cytomegalovirus infection. Some babies may have health problems that are apparent at birth or may develop later during infancy or childhood. Although not fully understood, it is possible for CMV to cause the death of a baby during pregnancy (pregnancy loss).” ~ CDC.GOV

IMG_6969

Malakai showed to be in normal hearing range! Yay! We will be checking in for another evaluation in 6 months to make sure his hearing hasn’t decreased due to the Congenital CMV.  I have faith that all will be well. 😇

Malakai’s eye apt showed that the surgery has been a success and has diminished the Amblyopia to 15% in both eyes we will still need more surgery in the future but we are happy that his brain is learning allow the two eyes to track together rather than cause double vision. We are also happy to say that Malakai will be able to be patch free for at least the next month.IMG_6984These CAT scan pics are so precious to my heart.  We obviously do not have ultrasound pictures for Malakai and these pictures of this sweet little profile and the picture below of his mouth and cute little nose fills that void in a way  what a precious gift.

IMG_6986

IMG_6987Kai’s skull! Isn’t this wild!! You can’t see the softened areas but you can See the open hole on top of his skull! Wow!IMG_6988IMG_7010IMG_7016

After 6 hours of apts. Malakai got to enjoy some well deserved fun in the hospital play area and enjoyed a scone that was almost the size of his head! 🙂

photo (5)photo (7)photo (6)

photo (3)

lol I asked Malakai to try and pull the sword out of the stone. 😉 

IMG_7019photo (8)

photo (11)

Kai wanted to take a picture of me. 😉

photo (9)photo (10)

This entry was posted in Uncategorized. Bookmark the permalink.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s