Welcome!

"Love builds up the broken wall, and straightens the crooked path" ~Maya Angelou

Hello all, and welcome to our family blog! Big P, myself, and Big Sis A. have decided to chronicle our journey along the crooked path of PJ's Infantile Scoliosis diagnosis.

To those of you who've stumbled onto our page during your own internet research on Scoliosis, we welcome you and hope that our journey helps you as well!

I guess the best place to start is to let you all know how we got here. A few days before PJ's 8 month well visit, I noticed him leaning to the right while sitting up. I re-adjusted him, assuming that he was just sitting funny, but even after several times of re-adjusting him, he still slumped and favored his right side. I also noticed that his back looked strange, with his ribs sticking out more on one side than the other, and a bulge on his belly that just didn't look right. My "mom gut" knew something was off, but figured my pediatrician would have a reasonable explanation. After all, PJ has been an exceptionally healthy baby up until this point, hitting all of his milestones (he's now crawling. All over the place!!!) and overall, just being the happiest, easiest baby EVER!

On the day of the well-visit, everything was going fine. PJ had his shots, and we addressed feeding concerns, crawling etc. Off-handedly, I mentioned his back. His Pedi, Dr. S, took him from me (I had been holding him for most of the appointment) and did an exam. His face immediately changed, and he advised me to take my son straight from his office to a local radiology office to have an xray done. He also gave me a referral for a pediatric orthopedic group which I was to call and make an appointment for immediately. He indicated that his musculature on his right side was significantly underdeveloped compared to his left side. My stomach rose up to meet my heart which had plummeted. My mouth popped open and I know, at that moment, I pretty much went into shock. Big Sis A was with us, and I had to hold it together. Dr. S didn't elaborate on it, other than to say he was concerned. My mind was racing, but I had to keep myself in control and not lose my sh*t in front of A. We left the office and I called my Big P (my husband) to let him know what was going on. Of course, he wasn't answering his work phone (!!!!). I was standing outside my car, trying frantically to reach him, and of course was just getting more upset. I arranged for A. to be picked up from the Dr's office parking lot so that I could take PJ to have his x-ray. Let me just pause in my story to say that my in-laws are absolutely amazing and rallied immediately to make sure Big Sis A was taken care of so that I could focus on taking care of PJ! I was finally able to get ahold of Big P, and just LOST IT. Thankfully, I had my sunglasses on and was outside of the car, so A. couldn't see me crying. I was terrified, because with my family history, its never "just" something simple.
We went and had the x-ray done, and PJ was phenomenal! He didn't cry and was flirting with the nurses- he didn't seem scared by the machine at all, more curious than anything. Not surprising, for those of you that know him, he's SUCH an easy-going kid!
Everything was going smoothly - up until this point. I saw people all around us having the radiologist come out and explain their results. No one came out to tell me anything, I was simply told that the results would be read and sent to the ordering Dr. I wasn't thrilled, but figured I would have answers soon. This was NOT the case. His x-ray was done that same morning. I didn't receive an answer until the following afternoon. And only after making SEVERAL frantic phone calls to both the radiology office and my own pediatrician, Dr. S, who revised his order to "stat" and who called multiple times himself. He called me personally that evening, after office hours, knowing I was beside myself waiting, and explained that he was sure the hold-up was due to them waiting until the pediatric radiologist could "read" the results. That answer was not good enough for me, and I started with the annoying phone calls to the radiology office at 9 am! During this time, I had a copy of the CD with his xray on it, and because it would not display on my computer, I downloaded a DICOM viewer online (Agnosco DICOM viewer -and its free!!). Somehow, seeing the image myself made me feel a little better about waiting and not as helpless. Big P laughed and said my crazy was showing ;) I say, never underestimate the resourcefulness of a terrified parent!

Finally, that afternoon, we received a call from Dr. S saying that he had gotten the report, and that it showed "just scoliosis". I have never been so relieved to hear such a serious diagnosis! Compared to the alternatives, we can deal with this! Because of my own personal family history with obscure disorders (more on that in a later post), I had been imagining the worst. Based on my research, there are many ways to treat infantile scoliosis, and ultimately, with the right managed care, a child has a fantastic chance at leading a normal, healthy life.

Which brings us to the present. We are now waiting for our follow up appointment with Dr. Peter D. (pediatric ortho) which is tomorrow. I have a very looooooooong list of questions. And I will be requesting a follow-up MRI to rule out any nuero issues.  I also am going in with a significant amount of research under my belt, and feel prepared for whatever may come. We've started on our long and crooked path, but feel with positivity and determination, our family will be just fine. We have an excellent support system between both mine, and Big P's family. We've mentally prepared for whatever steps are next for PJ.

We will be using this blog and other social media to keep everyone updated going forward :) I would love to call each and every person that we love personally, but we are so lucky to have so many people that love us, that phone call updates are going to be logistically difficult ;) We promise to keep this blog updated as much as humanly possible and we are so grateful for all of the love and support we've been blessed with!! WE LOVE YOU! :)

-Mama S.