Moms on Monday #6 / Kathryne from LA

Good Morning and Happy Cyber Monday Fellow CVI Families and the People Who Love Us!

Today’s Mom on Monday is Kathryne from Louisiana, mom to “Little C.”   Kathryne manages Little C’s care while working and providing spot-on advice to many new mothers of children with complicated diagnoses on CVI Facebook pages.  She has also actively advocated on a local, state, and federal level to maintain Medicaid for children with pre-existing conditions and to improve educational outcomes for children with CVI.

Mom: Kathryne H. 

Child:  “Little C” / 21 months old 

Cause of CVI: Infantile Spasms, or, yet to be diagnosed genetic cause

Topic: Hospitalization and Regression

During the first 6 months after Little C’s diagnosis of Infantile Spasms, he was hospitalized at least 5 times before he was diagnosed with another rare neurological disorder called paroxysmal sympathetic hyperactivity. 

Hooked up to all those monitors, there is very little to do other than lay in bed, especially for a developmentally delayed child who cannot roll, sit, walk, etc. Any time we had an extended hospital stay we always ended up back at square one for therapies.  Rarely did we ever receive inpatient PT or OT, except for maybe 1 hour during the stay to show us what we should be doing (you know, if those cords and NoNos on the IVs did not make it impossible).  So, of course, there was regression after every hospital stay.  

After Little C’s CVI diagnosis, we purchased a set of light up LED pool toys.  The shapes change color, but can be set at 1 color which is perfect for CVI as kids move through the phases. 

They are called Floating Light Up GeoShapes – Color changing light for patio, pool, or home 4 pack.  https://www.amazon.com/dp/BOOKFMG12E/ref=cm_sw_r_cp_apa_6B5eAbPSZCGJV

During our first extended hospital stay we brought the sphere (dubbed the Ood ball by his Neurology team) to Little C’s hospital room.  

This was when I discovered that extended hospitalizations are the perfect time and place to exercise the brain for vision.   Most rooms are clean white and the scenery never changes.  The room is so dull and boring; it is perfect for our kids.  For the first time, Little C began to use his vision to look at something other than the ceiling.  The hospital even had Elmo, Big Bird, and Cookie Monster in the gift shop.  

We actually had a skill improve IN the hospital.  

So, naturally, what do you think happened during the next hospitalization?  We came prepared.  We purchased one of the lights that shines scenes on your house that is sold in stores at Halloween and Christmas.  You can find snowflakes, ghosts, or, in our case, just a blue kaleidoscopic image.    

When Little C was not storming, his room was an oasis with lullabies playing on the IPad and lights dancing on the ceiling.  And, of course, there was his Ood ball, Elmo, Big Bird, and Cookie Monster.

In spite of the hospitalizations, Little C has managed to improve from Phase I to Phase II. 

Unfortunately, I can’t say the same for his other skills. 

Thank you, Kathryne and Little C.   After a successful Thanksgiving, I wish you both better days ahead.  

 

Published by

CVI Momifesto

CVIMomifesto is a blog dedicated to parent advocacy and community for families of children with Cortical Visual Impairment.

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