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! :)