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Oliver’s Story

Welcome to our CaringBridge website. We've created it to keep friends and family updated about Oliver. 

Oliver was recently diagnosed with craniosynostosis, a rare birth defect.  His sagittal suture on his skull fused at some point in the womb and his condition went undiagnosed for four years.  Oliver now needs major surgery to open his sagittal suture to allow for proper brain growth and lessen the risk of increased pressure on his brain.

Because this type of surgery is so uncommon in older children, we are planning on flying to Dallas, TX to have Oliver treated by one of the top neurosurgeon/craniofacial surgeon teams in the country.

Latest Journal Update

Good News...Finally!!

Eleven months, seven blood tests, six specialists, four x-rays, one ultrasound, one MRI, one CT scan, one VEP test, and we may have a diagnosis!

We traveled to Los Angeles in September where we met with a neuro-ophthamologist.  It was yet another, "Good news, nothing is wrong with your son." visit.  For a parent with a child who has not gained weight in almost a year and who spends half of his life feeling sick, "good news" is overrated.   

I spent the next couple of weeks questioning my sanity and occasionally questioning Oliver's.  His pediatrician wouldn't give us a referral to an endocrinologist and even kicked Oliver out of the room to talk to me about how this might all be in his head.

We had a follow up scheduled with his GI from months prior.  Glenn and I considered cancelling the appointment and just give all of it a break.  Maybe he would get better if we ignored his symptoms.  All of the doctors were telling us he was just fine.   

We decided to have one last follow up with his GI where I was sure he would tell us Oliver needs therapy.  The GI specialist took one look at Oliver's skinny body and his poor weight gain since his last visit and showed real concern.  He wanted Oliver checked for Celiac Disease based on his symptoms.

Armed with new information, we began noticing Oliver's pain was more severe when he was eating foods containing wheat.  We started cutting down on gluten and he began improving.  His antibody test for Celiac was negative (but he also has low overall antibodies), so the doctor checked him for the genes that causes Celiac.  He tested positive (20-30 percent of the population has one of these genes, so it doesn't make for a true diagnosis)!

Because Oliver is doing so well, his GI specialist wants him to go 100 percent gluten-free for the next six months.  If he gains enough weight, he will be diagnosed with Celiac Disease.  We are happy with this plan because usually doctors will want a biopsy of the intestine for a true diagnosis.  Celiac Disease is an autoimmune disorder that attacks the lining of the gut.   

So, something IS wrong with Oliver.  To me, this is "good news."  Now we have a plan to help him feel well again.  Instead of feeling helpless, we feel empowered and ready to take on this new challenge.  

Oliver told me today he just wants to be a "regular kid."  My greatest hope is that we can move on and in 2013 he can just be a "regular kid" with a special diet (although I think he's the most special kid in the world and wouldn't change him for anything!).