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Friday, February 05, 2010

A second, a third, and a fourth opinion

 January 7, 2010

In the last 7 weeks, Connor's developmental progress has been evaluated 4 times.  First by his pediatrician, then the NICU Developmental Follow-Up Clinic, then by Early Intervention, and finally by his physical therapist.  As we've learned all too well, that's a lot of opportunity for differing opinions.  (Which pretty much means we get to pick and choose the ones we like.  ;)

December 29, 2009

Back in December, his pediatrician said that everything looked great... he had no concerns.  (We love him!)

Sooo big! - January 8, 2010

We went to the NICU Developmental Follow-Up Clinic at the beginning of January where we were told his clapping skills were sub-par, he was favoring his left too much, his jumperoo was from Satan, he cried through his nose, and his trunk tone was low.  (I know... what?!?  I didn't start to process half of it until after we got home.)  They had great concerns for his gross motor skills, and we were advised to get him to physical therapy STAT.  Yet, there was discussion at the end over whether or not we actually needed to come back in a few months to another clinic, or if we were officially graduated.  And, so... we're supposed to go back in May.  (Disclaimer: While we adore our NICU family, we weren't too fond of their synopsis.)

Teeth! - January 12, 2010

Our Early Intervention team came to visit at the end of January.  Overall, they seemed impressed by his development, and many of the therapists had no concerns whatsoever for him.  The speech therapist even commented that many of his skills were in line with or ahead of his chronological age (because he's recognizing and responding to so many words).  The physical therapist was the only one to issue demerits... but only because at an adjusted age of 10 months, he's not yet crawling.  This means he has at least a 30% deficit, qualifying us for their services - in home, bi-monthly therapy sessions.  However, they all concurred that there was no immediate need for action... that he might start crawling all on his own, without any PT... or we can try to catch it now, to guarantee there is no further delay.  (Again, here comes Mommy Guilt.)

Fees for their services are based on family income, so because we're not on welfare, we have to pay for everyone else who is (isn't that what our taxes are for??).  EI won't even bother billing insurance until the cost for our services exceed our paid family fee.  And it doesn't matter that our insurance will pay 100%.  They want our family fee FIRST.  Previously, I had already figured out a way to massage the system a bit... go delinquent on our family fee, so that they were forced to bill our insurance... and had even been told off the record by EI staff that it was doable.  But, I've been labeled as THAT mom, and they're on to me.  So, I kinda don't feel it's even worth it anymore.

Bathing in the big boy tub for the 1st time! 
(a blow-up tub that sits inside the grown-up tub) - December 31, 2009

This week, we were able to get him in with our favorite physical therapist so far (the only one that generally doesn't incite meltdowns) for another evaluation.  Previously, I had halted physical therapy due to flu season at the end of September.  Taking him to a public place, where children congregate, just wasn't a good idea, when I felt I could work with him at home.  Since he was starting to fall a little behind, Mommy Guilt made me take him in for an evaluation.  Much to my pleasant surprise, his PT didn't feel that Connor was really falling behind at all.  She reminded me that crawling isn't even considered a milestone anymore... because some kids go straight from sitting to walking.  Refreshingly, she didn't think it was necessary for Connor to even start PT right now... that waiting a little longer for flu season to end was better.  She also wants him to be fully adjusted to the new helmet... so, we go back in March for another evaluation.  No biggie.  AND... she's willing to do home sessions (provided insurance will cover it).  (I love her!)

January 8, 2010

Since Connor's physical therapy will be administered by his former PT, we're going to take her advice and sit and wait.  Connor has plenty going on this month... with a new helmet to get used to, lab work & ultrasounds, and follow-up visits with his nephrologist & surgeon.

January 11, 2010

At 13.5 months of age, Connor is:
  • Busy learning new "tricks" every day!  On "command", he can clap, wave, hit his belly (when we encourage him with the phrase "get in my belly"), cough, find his binky, go "crazy" in his jumperoo, play peekaboo, mimic sounds, and sit for hours.  He's trying to dance, say "uh-oh", and shake his head yes and no.  I've caught him a few times nearly on all fours, but I don't think he understands that his arms and legs are supposed to move too.  Once or twice, he's even army-crawled for a bit.
  • Feeding is going well...  he would be perfectly content to lose the bottle in the middle of the day, but I hang on to it for the calories.  He's on Stage 2 foods (including meats) and plenty of self-fed baby snacks.  We're slowly incorporating small bits of table food, but mostly just trying to find the magic combination that won't constipate him (our biggest struggle right now).
  • Connor's also graduated to the big boy car seat, facing forward (because the behemoth convertible car seat we bought won't fit in our car rear-facing), and the umbrella stroller.  
  • He loves to push any kind of button he can find and does a good job of remembering their location on the object.  
  • He's starting to exhibit stranger anxiety, and always has to make sure mom or dad is close by.  Meltdowns are more frequent in strange situations, but he's easily consolable once he's being held. 
  • He's just about whittled himself down to 2 naps a day, and I'm working hard to lengthen the duration of those naps for sanity's sake.  He's still sleeping a good 12-hour stretch at night, with minimal disturbances.

Brian and I consider ourselves very lucky to have such an easy-going, mild-mannered little boy!

Multi-talented - January 9, 2010

Just in the last week, we know at least 3 of Connor's former NICU buddies have been hospitalized for bronchiolitis, pneumonia, and RSV.  Oh, how our hearts go out to their families!  All of them have commented how much harder this hospitalization has been compared to the NICU experience... and I can only imagine.  At our first NICU Developmental Follow-Up Clinic, back in August, the neonatologist commented that he was very surprised, given Connor's medical history, that he hadn't had any hospitalizations since his NICU discharge.  This makes me so grateful that Connor's bout with bronchiolitis and pneumonia earlier this year was minor, and motivates me to continue our house arrest.  Other than medical appointments, and the occasional family excursion, Connor stays home.  I do know how fortunate we are to be able to keep him home as much as we do!  Here's hoping we can stave off cabin fever a few more weeks until it's warm enough for walks outside.  :) 

Kisses! - January 12, 2010

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7 comments:

Megan B said...

I always say "ask 3 specialists a question, get 4 different answers." To be continued, then! Mommy Guilt is the worst. Did you say he's DOWN to 2 naps a day??? LOL, what a little sleeper you have! Cute pictures, cute pictures!

Adam & Kristen Birkmeyer said...

Connor has got to be one of the cutest little boys ever! I bet you can't wait for the day when you can just let him be a little boy and not have to worry about his doctor or that complication, etc. I'm proud of you and Brian though for being such amazing parents thru it all!

Hayley said...

i hate getting conflicting answers. i say go with the ones you like, as long as that sits well with you. you're the mom, trust your instincts.

i still can't get over how stinking cute he is!!!

Christy said...

Thanks for the update on the cutest baby around! I LOVE the pictures!

Heather V. said...

What a sweet little boy you have. He is so adorable. My 13.5 month old daughter was born 2 months early and spent time in the NICU at UVRMC. I read all of these blogs of NICU babies and my heart breaks for the families and everything they go through with the development issues with their babies. My thoughts and prayers are with you and your family.

Karen said...

love the updates...Kisses indeed!!

tiburon said...

I say mix and match all your opinions until you are happy. He sure is growing and getting cuter everyday :)

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