Welcome to Holland
During my many internet searches for endless subjects regarding Conner’s condition, I often came across other parents referring to "Welcome to Holland" and their "Holland Tour Guide." Were these parents finding time to go on vacation?? I barely found time to shower let alone dream of a vacation! "Welcome to Holland" was written by Emily Perl Kingsley and it depicted our circumstances exactly. In fact, it was the eye opener I desperately needed. I share this to give an outsider a look into our world.
About Our Holland Tour Guide
Conner's list of diagnoses is long. It is daunting. It is scary. It could also be far worse. It has taught me and those closest to him to be grateful and celebrate the little things. I find myself getting immense amounts of joy from Conner's smile and laugh. At times I feared he would not be able to do either. I’ve since learned that limits are not for Conner. He works on his own timeline and he will continue to progress as long as we surround him with people that believe in him and are willing to push and encourage him.
Our NICU Journey
If you've ever spent time in a Neonatal Intensive Care Unit (NICU) then you understand when someone describes it as a roller coaster. That is exactly what it is - whether your baby is in the NICU for 1 day or 1 year.
Life with an Ostomy
NEC is devastating…If you or someone you know had a very premature baby, then you probably recognize the dreaded term, NEC.
Periventricular Leukamolacia (PVL)
Periventricular leukomalacia (PVL) is a type of brain injury that involves the periventricular white matter of the brain. Damage to the white matter results in the death and decay of injured cells, leaving empty areas in the brain – called lateral ventricles, which fill with fluid (a condition called leukomalacia).
Infantile Spasms & Epilepsy
The hardest diagnosis...Infantile Spasms. My heart drops directly into my stomach when I say that term out loud. I often avoid saying the actual word out of fear that speaking it will bring them back into our life. I have endless amounts of emotion in regards to this diagnosis.
Cortical Visual Impairment (CVI)
Seeing more everyday…Conner was diagnosed with Cortical Visual Impairment (CVI) in March of 2017. CVI is a form of visual impairment that is caused by a brain problem rather than an eye problem. The eyes are able to see, but the brain is not processing the image as it should.
Therapy, Therapy and More Therapy
Where progress happens...We have tried many therapy related products for Conner. He is globally delayed, but continues to make progress at his own pace. He has always done things on his own time, so we continue to be patient and work hard along side him to help continue to make progress.
Life with a G-tube
Conner has always struggled with feedings. Because of his prematurity he was fed through an NG tube for months. Bottle feedings were slow, but once he started to gain skills and strength, he would go NPO (nothing by mouth) for one reason or another and his skills would disappear.
Cerebral Palsy (CP)
We knew it was coming. Cerebral Palsy (CP)...two words I feared hearing (but anticipated) from the day Conner was born.
Milestones - Big and Small!
To milestones! I am embarrassed to admit that I never actually did a baby book for Conner. For many reasons really. I never found a baby book that fit his journey - specifically being in the NICU, being delayed and not doing the things full-term normally developing babies do. This is a compilation of items that have worked for him.
Blenderized Diet (BD) and Small Intestinal Bacterial Overgrowth (SIBO)
So much to say about a blenderized diet (BD) when it comes to it's impact on Conner.
Something I was not prepared for in general with Conner was something called Small Intestinal Bacterial Overgrowth (SIBO). Conner checked many of the risk factors that can cause SIBO.
Resources
Over the last two years, I've spent much of my time (after Conner goes to sleep) researching his diagnoses, therapy options, toys, diets - you name it. This is a compilation of items that have worked for him.