JR Update

So.....if you read my blog consistently, you obviously know that Trey and I had a baby in June. You also know that he was 5 weeks early. Well, he wasn't just 5 weeks early. He had stopped growing 2 weeks prior to that so he was really more like 7 weeks early. We expected to see delays in his development. But I don't think I had fully prepared myself for the big picture. Anyway..here's the update on all that.

We're having some delays with John Robert's development right now. He's 7.5 months old and he's still not rolling over, sitting up on his own, putting weight on his legs or able to grab at toys by himself. He also tends to hang his head down after a little while. We've been to lots and lots of doctor's appointments over the last few weeks. He's seen physical therapists, neurologists, osteopathics, orthotics and we have more lined up in the coming months.  I'll break it down so that I remember all of this when I look back. But first....let me show you a recent picture of the cutie patootie.

To begin - let me explain that John Robert has torticollis. What? You don't know what this is?? I didn't either. Had never heard of it. Apparently, it's pretty common in infants. In normal terms, it's basically a bad crick in your neck. However, JR's case is very severe. It prevents him from looking to his left at all. And over time, it causes lots of other delays in his arms, hands, legs, etc... on that side of the body. It's also what caused him to lay so much on the right side of his head which in turn caused the plagiocephaly...yeah, that means he has a flat head. Sounds kinda scary though, doesn't it? It actually is pretty serious. It's not all cosmetic concerns. Hence the reason for his helmet. 

Okay....so now you know what we're dealing with. 

Here's the lowdown on what we're doing to help this sweet baby boy....

Physical Therapy -- I'm excited because we just got John Robert enrolled in the ECI (early childhood intervention) program. It's a state-run program and he can stay in it until he's 3 years old. And the best part??? THEY come to us. It's perfect. He'll start out with therapy once per week. He'll also be getting massage therapy from ECI. It's much less expensive than a private physical therapist. It's taken us almost 3 months to get started though. But in the mean time, we've gone to an: 

Osteopathic/Manipulative Medicine -- okay, some of you may think we've lost our marbles, but we truly believe in this therapy. We found a doctor...who was highly recommended by several people, including my MIL...who will do manipulation therapy on infants. He's very gentle. We've had 2 treatments so far and John Robert's turning his head to the left more than we've ever seen him do. It's incredible! Dr. T assures us that we'll see a huge improvement after 5-7 treatments. He also assures us that it's going to decrease the amount of time JR has to spend in that helmet. He's basically manipulating his cranial plates back into place. He's also relieving pressure on his neck muscles and his pelvis to loosen them up. The downfall on this treatment?? Insurance doesn't cover it. And it's not cheap. 

But...if it's working, we're continuing with it!

Neurologist -- This was the scariest of all appointments, but I was prepared for that. I'm not so sure Trey was prepared though??? We both loved Dr. A and it turns out that he's a D.O., not an M.D. I kind of like that aspect of him as well. If you're not sure of the difference, google it. Anyway, he was definitely concerned with JR's low muscle tone. He was hesitant to order an MRI at first....until he checked his leg reflexes. After seeing his very low reflexes, he insisted on scheduling us for an MRI. He explained that it was highly possible that JR sustained small brain injuries while he was in my womb - probably from losing oxygen due to my teeny-tiny placenta - and this could be what's causing his motor delays in his legs. He also noticed that his left thumb was still curled inward and not outward. The brain injuries would explain this as well. Treatment is still just very aggressive physical and occupational therapy. So........we're now scheduled for an MRI. It takes quite awhile to get on the schedule because they have to sedate babies in order to get them to sit still. As Coco pointed out to me though...at least they're not rushing us to do it. Which must mean that they don't think there's anything too terribly wrong. :) 

And lastly - Orthotics -- we see an orthotics specialist every 2 weeks to have his helmet adjusted. I'm a little discouraged in this department. They originally told us that he'd wear it for about 12 weeks. They measured his head last week and it's only improved about 3.5%. He's been in the helmet for 8 weeks, so I'd hoped to see about a 50% improvement. Not happening. I have mixed emotions about this helmet ever since starting the manipulation therapy, but we'll continue on with it and see what happens. 

Even with all these doctor's appointments.....John Robert is still a happy, happy baby! He's almost always smiling. And he's a great sleeper (knock on wood). He normally sleeps about 12 hours each night. Along with 3 hours worth of naps during the day. He's babbling and talking to us a lot these days. And he LOVES to hear his big brother's voice. He's eating lots of different foods - sweet potatoes, carrots, pears, apples, bananas, peaches and we're introducing more every few days. 

I started making his food myself and he seems to really like it! 

And that's the update on Mr. John Robert. Sorry for the wordy post, but I really wanted to get it all out there so I don't ever forget what we were going through during this time. 

More pics from the weekend to come later, but here's a few of the boys together. Hudson loves to lay next to his baby brother and cuddle with him.