Pictures so far....

I've been meaning to add pictures to my posts as we go along, but haven't uploaded any to the computer until today.... here's a few recent pics of PJ.  I'll add more later from the appointment yesterday.

PJ's x-ray with my attempts at Cobb measurement. As you can see, I came up with 33- not too far off the mark :)

 

 

PJ at his follow up appt with Dr. D! Playing with Daddy's phone and watching SuperWhy (his favorite show!) He's also a big fan of the crunchy paper on the table LOL

Nothing But The Best.....

Sorry for the late post for those of you who've been waiting for an update! Yesterday was crazy, and due to the wonderful (rolls eyes) traffic as a result of that horrific train crash the other day, we didn't get home until after 5 from our appointment! I95 and NY traffic sucks on the best of days, and yesterday was extra sucky LOL

Our appointment at Columb. Presb. M.Stanley Childr Hosp with Dr. V was supposed to be at 12:30. Aunt Dar was awesome and took Little Sis A for the day for us. We left around 9ish and were able to get to the city around 1130ish. Big P was able to get the day off and I am SO grateful he was there with me, both for the moral support, but especially because I hate driving in the city! ;) It was kind of strange being back at Columb Presb because I remember the buildings from when I was there! Not much has changed, and it was surreal taking my child to be seen for a back issue when 25 years ago, my Mom had been there for the same reason. It kind of hit home-because I now have a very good idea of the feelings, thoughts and anxieties she must've faced now walking into that same building to find out what is wrong with MY child's spine.

We got to the appointment super early, and sat around in the waiting room just playing with PJ. I had already had the massive amounts of paperwork filled out before we arrived, so there really wasn't much to do but wait. The office staff was incredibly friendly and, strange as it seems, they put us at ease. The P.A. Nurse Pract. that we knew from our Pedi's office came out and recognized me, and came over to chat for a bit which was nice. We explained what was going on with PJ and I told him that once I realized he was now with that practice, we took it as a sign, and we just knew that's where we needed to be :)
At that point, around 12:30 one of the other nurses came out and let us know that Dr. V was in surgery with an emergent case, and said it could be awhile and suggested we go grab something to eat. We were fine with that, after all, if it was PJ in that situation, that's exactly what I would want for him- our appointment could wait :)
We went down to the lobby and had lunch, and just talked for a bit while PJ napped. Despite the circumstances and setting, it was nice being able to just sit and talk with hubby without distractions or interruptions. We had nowhere else to be, and nothing else to do, which is SO rare in our new crazy reality of having two kids - the time flew.
We go back up to the office and were able to be seen right away. Perfect timing,  because Dr. V had just come back from surgery. His nurse came in and did the standard exam on PJ who was initially cranky because we had just woken him up from a nap. That is probably the ONLY time this kid is a bear- he hates being woken up! He snapped out of it pretty quickly, and started flirting with the nurse. She was cracking up and saying how cute he is (of course! LOL)
Dr. V came in and we had a great conversation. And it WAS an actual conversation. He didn't talk down to us, treat us like we didn't know anything, or talk over us. Phenomenal! He had looked at the previous x-ray, and advised us that he found a 30 Degree Cobb Angle, and a 27 Degree RVAD (Rib Vertebral Angle Difference) which in layman's terms, is how the spine twists or rotates in addition to it's curve.   Basically, PJ is right on the cusp for both measurements- typically anything below a 25 degree Cobb will resolve on its own over time without intervention. Anything above 25 degrees requires some sort of intervention. Same with RVAD. Anything below 20 Degrees typically results in "spontaneous recovery". Anything over 20 is typically associated with a high rate of progression. Not good. Right now PJ's in a position where it could go either way. His chances are good- possibly 85 percent chance that it will just fix itself if its just idiopathic.

I mentioned my family history of eosinophilic granuloma and Chiari. IMMEDIATELY, Dr. V said "Well, in that case, I feel an MRI is in order to see if we can rule those out since neither of those can be detected by xray". I almost cried- just the sheer relief of not having to beg for someone to validate my concerns! We discussed next steps- and course of action for the next few months. PJ will be going for his MRI around his 1st birthday. He will need to be completely sedated for this to take place- and we will have to have it done at a hospital, which is familiar with Infant Sedation. Obviously, we all know which local hospital (the only one on par with CP-MSCH) we will be taking him to ;)  Nothing but the best for my bubba!
Dr. V will then review the MRI, and once we rule out, once and for all, any nuerological causes- we will then send him for another x-ray 3 months after that to see if there is any change in his Cobb and RVAD angles. So a total of 6 months of careful observation. We can live with that. If he does in fact have PROGRESSIVE Idiopathic Infantile Scoliosis, the course of treatment Dr. V recommended is Mehta Casting. NOT bracing. Again- in line with all of the research we've done- Dr. V confirmed that this is the most effective route.
He spent an extraordinary amount of time, making sure ALL of our questions and concerns were answered and addressed. We left that appointment with a plan, with confidence and without fear- despite the uncertainty of PJ's situation. I cannot speak highly enough of Dr. V!!! Despite the fact that he is out-of-network with our god -awful insurance and we had to pay out of pocket for any and all treatment with him- Big P and I BOTH agreed that we will be staying with Dr. V and his practice. And for those of you who know penny-pinching Big P, this is a BIG deal ;)

Sorry for the Magna Carta of posts, but we are absolutely elated with our experience yesterday. THIS is what a doctor -patient relationship SHOULD be. A partnership working for the best interests of the child. We got that yesterday- Nothing but the best!

PJ will be going for his MRI sometime in July. In the meantime, he is allowed and encouraged to play/crawl/walk/horse around etc. No restrictions, in fact we're hoping that his additional mobility will encourage the underdeveloped musculature on his right side to catch up to the left. And that his spine will start to correct itself on its own.  He's crawling all over the place, and is now pulling himself up to standing on furniture and in his crib. God help me LOL he just does not stop! And we are so, so, SO grateful that this doesn't seem to be affecting him at all at this point!

We probably won't be posting again until our MRI experience in a few months. Until then- we're in a watch and wait pattern. And right now, no news is good news! :)

Appointments and Answers.....and More Appointments!

We had PJ's follow up appointment this morning with Dr. Peter D.  PJ was in a fantastic mood and Big P was able to get off of work to come to the appointment with me. To sum up the appointment briefly, Dr. D says that PJ has a "mild" case of Infantile Scoliosis with a Cobb Degree of 25. He said we could take the "wait and see" approach and see if it corrects itself with time, or if we wanted to go the more aggressive route, we could elect to do a night bracing system. When I asked about an MRI to rule out an nuerological issues, he said it "wasn't necessary". I found this surprising given my history of eosinophilic granuloma (which cant be detected by xray and can be passed on genetically) and my mother's diagnosis of Chiari Malformation (also with a suspected genetic link and can't be seen by xray alone). And yes, he was made aware of my family's medical history- which in and of itself should've risen red flags and should've indicated PJ was a prime candidate for a follow up MRI.
When I asked what his RVAD (basically, vertebral rotation) he said there was a twist but didn't go into specifics. He also suggested that I stop going online to research so much so I wouldn't "drive myself crazy". We were instructed to make an appointment with his in-house bracing specialist and that was that. While I liked his personality, and his sense of humor, a few things just didn't sit right with us, and Big P and I both decided to seek a 2nd opinion. While I see what he was saying, and I know he was probably trying to just keep us calm, it was all just a little too nonchalant for us. I think doctors sometimes forget that while we're just another patient to them, to us, PJ is our whole world. I WILL continue to research and "drive myself crazy" because I'm his Mom and that's my JOB. I will find the best, and most up to date research and methods to deal with all of this because PJ can't advocate for himself at this point- and his future-being able to walk, run, jump, play sports, and lead a healthy life- all rests on what decisions we make right now. We can't afford to hope and pray that this will fix itself. And to be honest, my "mom gut" is still telling me to keep pushing for that MRI. Dr. D was great, and I know he's fantastic at what he does, I just don't in my gut believe that he sees enough Pediatric Scoliosis patients in our little state to be an absolute expert on it. We would be doing ourselves and PJ a huge disservice to not consider that there ARE experts on this, and who see it everyday. We made the joint decision to pursue those other avenues.

SO.... Big P and I decided to seek out a 2nd opinion and we researched a few hospitals/specialty groups with a primary focus on Infantile Scoliosis. We chose to meet with Dr. V at New York Presbyt. Pediatric Spine Ctr. Incidentally, this was where I was seen as a child when dealing with my spine issues. We feel comfortable with this choice- they are the BEST at what they do. In a weird twist of coincidence, one of the PA's that Big Sis A saw at our Pedi's office, is now a PA at this exact same office. We absolutely loved him, and often chose to see him over an actual doctor for many of A's well-visits. He had a great rapport with A, and I valued the fact that he considered the parent a partner in routine healthcare decisions. I'm taking the fact that he is now with this VERY specific practice as a sign that this is where we need to be.
PJ's appointment is next Monday, and Big P and I will be driving into NYC for the day. While we're not positive that they will give us any different info than Dr. D gave us, we will feel better knowing that he was seen by two different doctors. We want an objective opinion, and we want it from the best. Not too much to ask, right?! ;)

Until next week, we won't be posting much. We'll update after the appointment in NY next Monday :)

Again, thanks to everyone for the love and support!! <3 p=""> 

Infantile Scoliosis Info Video

Here's a quick little video featuring Peter Gallagher on what we're dealing with. It also gives an idea of what PJ will be rockin' in the next year or so, if they decide to cast/brace him ;) The casts are "waterproofed" with duct tape- sooooo we will be gratefully accepting really cool patterned duct tape donations! LOL Grumpy (my grandfather) is looking down from Heaven and smiling :) He was a firm believer that duct tape can fix just about anything/everything. Turns out, he just may have been right! We'll be posting more educational info in addition to our updates. As with anything, education, research and raising awareness are crucial in curing and preventing disorders. Infantile scoliosis is NOT common, contrary to popular belief. Infants are not screened for it- it's something only checked if a parent or doctor notices something "off". Raising awareness may help infants affected, be diagnosed earlier, leading to better outcomes! Click here for an informative guide created by the Infantile Scoliosis Outreach Program for parents as well as pediatricians about simple ways to screen your little ones.

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.