Sunday, January 17, 2010

"Pity Party"

Well, if it were a true play on words it would be "PITTY party" because it's Pittsburgh, get it? well, I'll leave the corny jokes to the professionals, like Jason.
We're back from Pittsburgh! I have to be honest..I really hate that place. Not the hospital, just the city. I am VERY anti-city. They just really hate me. Jason navigated like he was born and raised there, I was pretty impressed. scared, but impressed.
Our miracle doctor was REALLY nice, really smart and really.....experienced? knowledgeable? aged? either way he was smitten with Roman and we were smitten with him!
So, before we are willing to eliminate the possibility that he has chiari with no symptoms we need to do a few tests.
First, a swallow study will be done to see what consistency Roman can handle best. Currently we're having to thicken all of his bottles. In fact, if Roman could get all of his necessary nutrients from purees alone--we'd nix the formula all together. Feeding time is not a peaceful time, it's spitting and sputtering and coughing and choking. I'm actually glad that we're getting this test, it's long overdue! Hopefully we'll learn that his feeding-time troubles are not chiari related.
Next, a sleep study will be done to see if Roman is having any apnea issues. When it comes to Roman's sleeping habits I've always wondered "is this normal?" Because of his heart condition he has some raspy breathing and propping him is the only way he's able to sleep.
The last is an MRI of the spine to check for a syrinx. This is the test I dread the most. There is nothing that makes me say "Oh, he doesn't have that" or "yeah, he has that but it's not bad." I have no idea what to expect. Additionally, an MRI for Roman means going under anesthesia, and worse coming out of anesthesia! To me, the negative outcome of this test is far worse, it almost always means surgery. We can deal with sleep apnea, we can handle the eating woes, we are exhausted with surgeries. Not because of the general disruption that having a surgery brings to your life. No, no, those we can handle. We're tired of seeing our blue eyed cheery baby in pain. We're dreading the results, really really dreading them.

I guess at this point you're wondering what a syrinx is and probably how to say it. It's pronounced "srinks" and here is a vague description from

A syrinx is a fluid-filled cavity within the spinal cord (syringomyelia) or brain stem (syringobulbia). Predisposing factors include craniocervical junction abnormalities, spinal cord trauma, and spinal cord tumors. Symptoms include flaccid weakness of the hands and arms and deficits in pain and temperature sensation in a capelike distribution over the back and neck; light touch and position and vibration sensation are not affected. Diagnosis is by MRI. Treatment includes correction of the cause and surgical procedures to drain the syrinx or otherwise open CSF flow

I kept saying that the trip home from Pittsburgh was the longest trip ever, but I think our SB journey trumps them all.

For our next trick, the Potter's will anxiously await our phone calls confirming test dates. After that, we'll painstakingly await test results and soon after that our heads will explode..or maybe implode. Either way, it's going to get messy.

I'm hoping to dodge all sad news soon. I hope my next entry will be something cute like, "Roman crawled" or "Roman finally has a tooth!"

I need my SB moms to share their kids` recent accomplishments. I love hearing about our kids beating the odds, it really consumes me with pride. I'm so proud of our children and the things they've had to endure. Please, share. Don't be so stingy with your good news. jeez.


  1. My Caleb is 4 years old and is doing things that we were told he would never do (doctors and therapists don't know everything). He is walking very well with just AFO's and a walker, still uses his wheelchair for when we are out and about. He's amazing, works harder than anyone else I know.

  2. We have gone down this very same road. Nate has sleep apnea (but was diagnosed just after birth while still in the NICU) and we found out shortly after his 1st birthday that he does in fact have a syrinx. That was scary news, but the more I looked into it the more I found that kids have been living with them for years with no symptoms. Most times, it doesn't even require surgery just monitoring with an MRI every 1 to 2 years. Just take one thing at a time! Nate seems to be learning new things EVERY DAY lately, it truly amazes me!

  3. This is what I love to hear, our kids beating the odds! Thank you for sharing your stories ;)

    Our kids, their stories, the struggles, it all amazes me what the human body and mind are capable of dealing with.