Huge April Update!

As Autism Awareness month winds down, I figured now would be a good time to give a little update on Caiden, especially since we have some BIG news to share!

Caiden has made leaps and bounds in his development lately. He has almost met all of his short term goals for OT, such as drawing a circle and straight-ish lines. He has also been showing more signs of sensory seeking instead of avoiding. In PT, he has finally mastered catching a ball, and jumping, managing to get both feet clear off the floor! He is very proud of himself for this, as he should be ;) However, it is ST that he has shown the most progress in recently. Caiden now has more than FIFTY - yes, fifty! - words he can say!! These include "mommy" and "daddy" which he had not said in roughly a year!

While we are extremely excited about how much he's improved lately, we are still keeping a close eye on him. He is prone to regressions, so we're hoping that a lot of his new skills stick around for a while this time.

The developmental pedi gave me some paperwork on IEPs so we can get him enrolled in school this fall. He's going to need a one-on-one aide and still isn't potty trained, so we've got a lot of work ahead of us. I personally think he's going to have a rough few days once he first starts trying to get used to it, but I think after that, he's going to love being in school.

Because Caiden has done so well lately and is showing so much progress, the doctor decided that he doesn't need to go back to see her for a whole entire YEAR!! She still wants us to keep her updated and to go in if something comes up, but as long as he continues to do well, we only have to see her once a year.

Today he weighed in at roughly 45lbs (97th percentile) and is 3'7" (99th percentile) and........ he let them take his blood pressure!! Caiden has only tolerated having it taken ONE other time, and today he didn't really care, just got kinda wiggly. It was a perfect 100/60 too!

Our next big date is in just two weeks when we go back to neurogenetics and meet the new neurologist to go over his last MRI. Hopefully we'll continue to get good news!

Seven Months

An open letter to our son's former pediatric neurologist.

Dear Dr. M.,

You probably don't remember us, after all, its been seven months since Caiden's last appointment with you. Seven months since we sat next to you and begged for you to listen to us. Seven months since you dismissed our concerns about absence seizures. Seven months since you threw two opposing, and impossible diagnoses at us. Seven months since you declared our son's atrophied brain didn't require a follow up, and that we'd be better off seeing a geneticist. Seven months that you have failed to return our phone calls.

Like I said, you probably don't remember us, and we won't be back for a follow up, so let me refresh your memory and show you why our story should be important to you.

We came to you after an abnormal brain MRI left our pediatrician (and us) seriously concerned about Caiden. We were just trying to rule out cerebral palsy, what we found was much worse and started us down a diagnostic rabbit hole.

His brain showed atrophy.

Had you taken more than the five minutes you spent skimming over his MRI, you would have seen the real damage, you would have seen the holes. You would have diagnosed him with cerebral palsy and periventricular leukomalacia. You would have saved us from months of heartache and financial strain.

But you didn't.

Instead, by your inaction, for seven months, you let us believe that Caiden's mysterious brain condition had the potential to be terminal after we'd ruled out all other possibilities. We may be young and still somewhat new parents, but even we know why they save those tests for last.

That's where you left us; waiting for the hammer to strike, waiting for a prognosis, and not necessarily a diagnosis. Waiting to find out if the atrophy was progressive, and how much longer we'd have with our son. For seven months, I was scared to put Caiden to bed, afraid he'd have passed in his sleep, afraid each day could be our last.

Trust me, its a terrible way to live.

Last week, however, our pain was finally lifted. We had an appointment with a Neuro-Genetics team who thoroughly examined his MRI and saw clearly what you missed. We're just waiting on a confirmation, and we can add those two diagnoses to his list, while we remove two of yours.

Two completely manageable, non-degenerative conditions. Under normal circumstances, they would have crumbled us, but instead, it was an incredible relief.

I don't know if you have children. I don't know how long you've been a pediatric neurologist. I don't really care. What I do care about though, is that you know that you failed us. In every way a doctor can fail their patient.

Not because you got a diagnosis wrong, but because you didn't care enough to try and get it right. You have to care about the people who come to you for help. If you don't, you leave them in positions like the one you left us. Thankfully, we had others who took our concern seriously, and friends and family to stand by us.

Our story turned out alright. Our son's conditions are not terminal. If they had been, and we trusted your judgement, would you want to live with the guilt that you did nothing? How many others have you failed the way you failed us? Can you live with that number?