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:
Plagiocephaly
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!
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An Early Start 
Ah yes….the memories of micro preemiehood. I had twins born at 26&0. We spent 3 months in the NICU and said lots of prayers. Now o can also say….pt or rip and bpd are all things you will get past eventually…..although a struggle…….continue to keep your chin up, clear every hurdle placed in your way and know that time goes by WAY to fast!!! You as mom knows what is best, don’t let anyone discourage you. soon her will be off to school playing with the others and YOU WILL continually have those concerns as to if he’s going to be ok. as much as we dislike to let go of our micro preemie babes….they WILL grow strong, resilient beyond belief and more adaptive than their peers! Keep up the GREAT work and know JAx’s first hurdle was proving to them in the NICU that he was anything but a “whimpy little white boy” like they are tagged in the NICU….he is precious, strong and has God watching him every day of his journey!!!!
God bless and know it will get better!
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Sorry ROP not rip
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Thank you so much! How old are your twins now? Jax definitely proved he wasn’t a “wimpy white boy!” He’s so strong and I learn from him every single day. Thank you for sharing and for the encouragement.
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We love following Jax and marveling at how well he is doing. Don’t lose heart- our 29 weeker didn’t sit until 9 months and didn’t walk until 18 months. He does it all eventually- just slower than other kids, even with PT and OT. I’m not gonna lie, it can be depressing at times watching other kids do things faster, but I find it helps a lot when instead of comparing his progress to other kids, I compare his progress to himself and how far he’s come. (I know, sometimes easier said than done!)
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Good advice, Cori – thank you! I know Jax is a tough little dude and he’ll surprise us all the time! How old is your little one now? Is he still in therapy?
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Our son is 28 months and he still does PT, OT, and Speech. We have therapy twice a week. Unfortunately, he didn’t do the magical “catch up by 2”, but you’ll find that catching up by 2 is less common than they lead you to believe in the beginning. We’ll likely do the full set of therapies throughout his childhood. But he is such a happy guy and really seems to enjoy his therapies (I think he sees them as special play time) so it’s not so bad. We’re so proud of his every accomplishment. Our little guys work so hard, and I think they will be stronger people in the long run for all they go through!
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Yeah – I don’t buy that whole “catch up by 2” thing. Everyone is different! I’m glad he likes therapy – it is really fun, so I can see how it will become more like playtime for Jax, too. It’s so amazing!
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You can brag all you want, you should be a proud mama!!! Jax is an amazing little man, he will have lots of surprises for you.
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🙂 Thanks, my friend! The kid is full of surprises!!!! Best. Thing. Ever.
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Andrea you & your husband are doing great!!! I love reading your posts and hearing what new things Jax is doing! I’d love to meet him someday 🙂 I totally understand your feeling of guilt; my baby Levi was born 5 weeks early (i know… Nothing compared to Jax) and we were in the NICU for 9 days and I was so hard on myself, and still am occasionally… Thinking ‘this wouldn’t happen, or he probably wouldn’t have ‘x’ problem if I could’ve carried him a few more weeks’…. But just goes to show thats its just not up to us 🙂 Those babies come out whenever they want for some reason or another! I know its hard to not feel guilty sometimes, but just think how grateful & lucky Jax is to have such wonderful loving & caring parents!!! I know Jax would not want you to feel guilty! Keep up the good work!!! (And the good posts 🙂
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Thank you for the support and encouragement! In the NICU, the doctors would always tell us, “Jax is in charge here!” And that is definitely the truth! I know he came early for a reason that only he knows. And I’m so grateful for his spunk! Any time in the NICU is too long, so I know your 9 days on the “inside” with Levi were scary!
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Definitely don’t feel bad about Jax starting PT and OT!! My boys have been seeing the PT since they came home from the NICU (tho in the beginning it was just observing them, not much to do with two babies who are basically at their due date, lol). It’s hard work for them sometimes but it’s play and they LOVE it. Plus they tend to nap well after the work out of PT 🙂 I bet Jax will have fun.
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Thanks for the support! I know therapy is very common for our little ones! Jax does like it – he loves playing with new people and new toys. 🙂 I feel very blessed to be so “plugged in” with support / therapy options so we will be able to catch any more delays or red flags right away.
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Sounds like a great plan! Jack has had OT since he was 5 months, PT since 12 months, and speech since 18 months. I have the same love/hate relationship! I love that he has all the support and professionals keeping an eye on him. I hate that he has to work harder to do typical things! Just a quick feeding tip….take it slow and don’t offer mixed textures (like yogurt with fruit in it or noodles in a soupy sauce). The mixture of textures is very confusing to their little mouths. Jack did so much better when we offered textures separately…for example, plain yogurt was offered separately from bites of peaches/pears. (This advice came from our wonderful OT). I wrote a post about some of our feeding experiences..
http://jackryansjourney.blogspot.com/2013/01/flashback-friday-feed-me.html
Jack also didn’t sit up unsupported until he was 12 months old…started crawling at the same time. I was completely panicked! I know that all preemies are different, so it’s hard to see past the immediate moment when delays are involved. In our case, Jack needed support from therapists and lots of time to find his way!
Good luck! And keep writing! I look forward to hearing about Jax and your family every week!
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Thank you! Great advice about not combining textures. And I also loved the tip from your post on not scraping food from his chin. I never thought about that being a trigger! We’re focusing on feeding this week in OT, so it will be interesting to learn / see how we will approach it with Jax. Thanks for the help! 🙂
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