Now that Jax is feeling a bit better, it’s time to move forward with a game plan.
We all know our little buddy is great at smiling and communicating, right? It’s so fun interacting with him. Laughing, smiling, singing, and most recently, roaring, are some of his favorite things to do. I’m so amazed by this – doctors warned us that because of his early birth, he may never been able to interact with us. Everyday, I’m grateful for his smile!
Unfortunately, Jax is a little behind on the physical side of things. Up until recently, Jax has been meeting milestones for his adjusted age with no problems. But now, we’re seeing a bit of a delay. For example, he is still not rolling or sitting, and he has no step reflex (that’s when a baby pretends to walk when you hold them up). He was also showing some increased tone and reduced reflexes in his feet.
Jax is also a great sleeper! (I know you’re thinking, “rub it in why don’t ya?”) But, I’m not bragging. Since Jax is a good sleeper (8 -12 hours a night at a time) and he can’t roll or change positions, he has plagiocephaly. That’s a fancy name for a “flat head!” It’s caused by spending too much time in one position (i.e. sleeping).
Jax is also a great eater! (Again, I’m not bragging!) But, he will not eat anything with chunks or texture. If his food is not completely pureed smooth, he gags and spits it out immediately. Many kids with a history of being on the ventilator show this type of oral aversion because they “remember” having that crappy (but life-saving), plastic tube shoved down their throats.
So, rather than let him get further “behind,” his pediatrician and I decided that it was time for Physical and Occupational Therapy so we could nip any problems in the bud.
After evaluations with a plastic surgeon (for the plagiocephaly), an Occupational Therapist, and a Physical Therapist we now have a game plan.
And I’ll admit, I’m not handling it well.
All the other things we’ve been dealing with (Chronic Lung Disease and ROP, mainly) have been leftovers from his NICU stay. Now, these are new problems. And it’s a great big slap-in-the-face reminder that Jax has to work really hard at doing “simple” things, like breathing, eating, and moving. I wish it was all smiles and laughs for him! He’s such a happy and content baby – and my hope of all hopes is that he stays that way even with the constant doctor’s appointments, therapies, hard work, and surgeries.
It’s hard not to think “If only I would have been able to keep him in longer…” Guilt is not someone I like to invite to the party, but she shows up uninvited all the time…sigh.
So – we do all we can to make things better for Jax. Here’s the plan:
Jax gets a new “accessory” – a Cranio-Cap. Basically, it’s a helmet that he will wear for 23 hours a day for 3 months. Yes. Right in the dead of summer – that should be fun! We get to take it off for one hour a day to give him a bath and a million kisses on his head.
Plagiocehpaly is fairly common, especially with the Back to Sleep campaign which has helped reduce the number of cases of SIDS by educating parents to put their babies to sleep on their backs. Last year, Gillette Children’s Specialty Healthcare prescribed the Cranio-Cap for 650 kids in our area to help reshape their heads.
It won’t hurt. It doesn’t squeeze or actively reshape his head. Instead, it “has a snug fit in some areas and is open in others. As a baby’s brain grows, the skull slowly molds into the open areas of the orthosis, rounding the head over time.”
Here’s something fun! Let’s take a vote! How do you think we should decorate Jax’s helmet?
Physical and Occupational Therapy
The difference between occupational and physical therapy is confusing. Especially since they are very intertwined for babies. In general, occupational therapy focuses on fine motor skills (like grasping objects) and independent living skills (like self-feeding). Physical therapy focuses on gross motor skills like rolling, sitting, and crawling.
Jax will receive occupational therapy once a week for three months. He will meet with his physical therapist every other week for three months. His goals are to be able to roll over, sit independently for 30 seconds, reach for toys while on his tummy, scoot 4 feet, grab and hold onto his toes, and eat textured foods. We will continually evaluate is progress. Who knows, maybe he’ll meet all his goals ahead of schedule!