Thursday, August 16, 2012


Last week, on the 10th, both of my children were evaluated by specialists.  Yes, because apparently we just can't get enough of doctors and therapists in our family.  You may not be that interested in this extremely, horrendously, long-winded post, but I'm recording it here because, believe it or not, all of this medical stuff comes in handy when things come up down the road.

I'll start with Russell:

Because he doesn't vocalize much, I asked his pediatrician if he thinks it would be worth it to have his hearing tested.  He said yes, and referred us to Kids on the Move, the Early Intervention program in our county (through which Caleb receives feeding therapy).  Even though all we needed was a simple hearing test done by a nurse, they suggested having a full evaluation done in case Russell qualified for therapy in any area.  Because he is Failure to Thrive, they would automatically pick him up for therapy if there was any question that he needed it.  So our Family Advocate came and did an in-depth evaluation of all of Russell's milestones.  It turns out he has a mild to moderate delay in social/emotional development (because of his lack of responsiveness related to his poor vocalization skills).  So he will be starting therapy with a cognitive development specialist shortly.  I don't know yet how often he'll be getting therapy, but their thinking is that if he ends up needing speech therapy three months from now, when Caleb turns three and graduates from Early Intervention services, then they will keep Caleb's feeding therapist as Russell's speech therapist (she's actually a speech therapist who specializes in feeding) because she has been coming to our house since Caleb was three months old.  Then she will be available to answer any questions and help with any problems that we have with Caleb's eating (off the record, of course).

Fast forward to today...Russell had his hearing test.  And, not surprisingly, his hearing is normal.  He has been experimenting with saying, "ba" here and there, but that's a very new thing, and he seems to have a hard time catching on to it.  After paying closer attention, he doesn't seem to make multiple vowel sounds, either.  It's all "ah," and no "oh" or "ee" or "ay."  Since his decrease and then increase in cooing correlate with his very poor growth and then beginning solids (and thus reasonable growth), it's possible that poor nutrition plays a part in his development.  Which is kind of scary.  I'd hate to think I starved my baby enough to cause cognitive problems just by breastfeeding him.  I thought I was being a good mom by doing that.  Hmm.

Good thing the appointment with the GI doctor is next week.

Now for Caleb:

He was seen at the NICU follow-up clinic, where the state funds a clinic with volunteer doctors, therapists, and specialists who come together to evaluate the smallest and earliest of preemies in one place.  We were there for over three hours and saw a developmental pediatrician, a nurse practitioner, an occupational therapist, a speech therapist, and a nutritionist.

The developmental pediatrician said that Caleb is doing very well.  She did things like put a block on the bowl of a spoon and hit the handle of the spoon to make the block fly, and then asked Caleb to do the same.  It was fun to see his thought processes at work!  No concerns with his development whatsoever, as always.  I asked about ADHD, since Caleb's IFSP (eval through Early Intervention) showed some concerns with his energy level and ability to focus.  She just suggested that we enroll him in an experiential based preschool where he can learn appropriate behavior for school without being expected to sit still and be quiet while the rest of the class does something that he finds to be very boring.  She said that he will have to learn coping skills when the time comes, such as squeezing a stress ball at his desk.  She also said...get this...that Caleb is very fortunate to be so cute, because it will make it hard for his teachers to hate him.  And she wasn't kidding!  She didn't say it to flatter me!  And to be honest, it really makes me sad for all of those kids who are just like Caleb who may drive their teachers nuts and who aren't cute enough to bat their mile-long eyelashes to melt their teachers' hearts.  It just isn't fair.

Then occupational therapist was very helpful.  He knew of my concerns about ADHD and the fact that Caleb's IFSP showed that he isn't making very much progress with gross or fine motor skills and may qualify for PT through the school district when he turns three.  The OT told me immediately that he could tell just by watching Caleb walk that he is a sensory seeker.  He craves sensory input (the world around him is just too boring, so his brain tells his body to do things to excite his senses) so he walks on his toes off and on.  He told me how your body is designed to absorb the shock of walking, but Caleb's brain wants to feel the shock more, so he walks on his toes so he can sort of bounce.  He does it a lot, but not all of the time, and both the OT and the nurse practitioner were surprised that his leg muscles and tendons weren't tight, because he walked like that the whole time that he was there.  He also kicks his feet nonstop if he is expected to sit still.  After talking for a few minutes about Caleb and his habits, the OT learned that Caleb loves books and will sit still and read book after book after book with us.  Because of that, the OT said that Caleb is very unlikely to have ADHD and that his behaviors are without a doubt because of the way his brain processes sensory input.  To cope with that, we are to give Caleb as much sensory input as he desires, in a way that is appropriate, so he doesn't seek sensory input in inappropriate ways.  We are to massage his legs when he is expected to sit still on our laps so he doesn't feel the need to jump down and find things to get into.  We are to get him a unitard to wear at church under his clothes so he can feel like he is getting a constant tight hug so he doesn't feel the need to run up and down the aisles, getting into everyone's purses.  We are supposed to do lots of roughhousing at home so he doesn't feel the need to throw things and get into things and have tantrums because his brain is bored.  Maybe some day we'll be able to take down the baby gate between the living room and the rest of the house.  :)  I also want to get him a weighted blanket so his brain will be able to relax during nap time.  Maybe then he won't take two hours to fall asleep at night, and maybe he will sleep during his nap time instead of singing "Paradise" by Coldplay for three hours straight!  (But hey, at least he's happy to sing in his crib for three hours every afternoon.  Because he sure isn't happy if he misses that time to calm down in his crib every day, whether he sleeps or not.)

The OT also expressed some slight concern over Caleb's muscle strength.  I could tell he was contemplating cerebral palsy (after all, Caleb did have moderate brain bleeds at birth), but after doing an exercise where Caleb lays down on the floor and then hops up as fast as he can and picks up a ball and throws it, he decided that Caleb is just plain weak.  It's probably related to poor nutrition, he said.  And it's true.  Caleb is now down to weighing 22lbs 8.5oz.  He is losing weight fast.

He also informed me that although Caleb will be too old for early intervention after he turns three, and thus no more feeding therapy through them, there is a Pediatric Rehab in the county where we can continue to receive feeding therapy!  Yay!  I thought we'd be on our own in three months' time, which is kind of a scary thought.  The negative side is that we would have to go to their facility instead of them coming to our home.  But the positive side is that our insurance would cover it!

He also said that there are no red flags as far as Caleb's motor skills.  He may not be the most athletic, coordinated toddler around, but there is nothing really to be concerned about.  I agreed with the OT, and said that my only concerns are that he is barely able to pull his pants up and down, and that combined with his extremely short attention span will really complicate potty training.  But it's alright for now, because he isn't even close to being ready to start potty training.  In fact, just the other day he peed when Nate took off his diaper.  Sooo not ready.  The OT said that that's because he is a sensory seeker!  Ah-ha!  That sensory seekers crave such deep sensory input that it makes them much harder to potty train.  He said that sensory seekers will think, "Oh!  I need to go potty!"  And then half a second later, "Oh, wait...I just went potty...."  So Caleb may not be potty trained until he's much older, and that's ok.  The only problem with that is that most preschools won't take kids who aren't potty trained, so he may not be able to go to preschool for a while.  Oh, well.  Maybe I'll put him in gymnastics.

And on to the speech therapist.  She remembered Caleb from a year ago when she evaluated him.  He was very advanced at that point, so she decided to start his eval this time far ahead of normal.  She had a big book full of pictures.  For example, a picture with a boy with a basket full of eggs, a girl with a basket with three eggs, and another boy with a basket with one egg.  She would ask him, "Which basket has one egg?"  And he would have to point at the correct basket.  There were all sorts of pictures like that.  (Unfortunately, over half of them were food-oriented.  Hmph.)  Some questions I knew were beyond Caleb's ability to answer, but some of them he got right, and a lot of them he got wrong but I would have expected him to get them right.  Then the speech therapist pointed to the bottom of the page, where it said, "5.0-5.5" and she said, "Do you see who these questions are for?"  Yes, he was answering questions for five-year-olds!  WHOA!  So it wasn't a big deal that he was getting them wrong.  Not at all.  By the end of the extensive evaluation, she said that his expressive communication was at the level of a 3.5-year-old, and his receptive communication was somewhere between 3 years and 3.5 years.  Pretty decent, I'd say!

Finally, the nutritionist.  She was sooo helpful.  We recently switched Caleb to what's called the "blenderized diet" (BD) because all four of the amino acid based formulas out there cause uncontrollable vomiting and horrible nausea.  He was losing weight and so miserable, we just had to change something.  So we're trying the last thing in my bag of tricks.  Every night, after Caleb goes to bed, I blend up his food for the next day in our awesome Blendtec blender so it's fine enough to go through his tube without clogging it.  I did my homework and came up with three "recipes" to rotate through.  Each one has enough calories, fat, carbs, protein, and calcium and we have started giving him a mulitvitamin. The nice thing about BD is that we can make it more calorie dense (aka, formula was 30 calories per ounce maximum, and I'm making Caleb's blends up to 37 calories per ounce).  I'm able to give Caleb 300-700 more calories each day through BD than before.  So I just wanted the nutritionist to look at my "recipes" and let me know if there is anything that I'm overlooking.  She said it looked great, but that she would take a copy and run it through her computer program to make sure everything was accounted for.  Also, I asked her what foods to trial next that would fill in the nutritional gaps, so to speak, and she suggested fortified baby rice cereal, spinach or kale or beef (for iron), and blueberries (for antioxidants).  She thought our course of action was a good one, and said, "I'll be interested to see how his weight gain goes."  I think we were all excited to see him finally tipping the scales, but surprisingly a few days ago we discovered that his weight is doing worse than ever.  He has lost 8.5oz in the last 14 days, despite all of the time and effort and math that I have put into getting calories into him.  His health is quite a mess and now I'm waiting for the GI doctor to call me and tell me what comes next, because at his age it is so important for him to grow...not shrink.  What a miserable disease we're dealing with here.

And that is everything.  All together, a very good appointment for Cal.  His health is a huge mess, but his development is great!  Too bad growing is slightly more important than talking.  *sigh*  But as always, I couldn't be more thankful that we don't have anything else to worry about when we have this huge feeding mess hanging over our heads.  I just hope that Russell's development catches up without a hitch.  Until then, I think I myself might need therapy in order to deal with all of this!  Or at least more dates with my cute hubby.  :)

And now, I'll finish off this heavy post with a light picture of my adorable little baby from back in May when he fell asleep with his foot in his hand:

1 comment:

Heather said...

Glad Russell's hearing test went well! I doubt she'd remember me, but I hope you get Aubrey for a developmental therapist- she's very awesome. Way to go Cal on your super language skills and super cuteness! It sounds like he had a great OT eval- I'd love to hear an update some time on how the tips help out. What a relief that your insurance will cover feeding therapy and we'll be praying for the BD to help Caleb gain some weight! Seth still says your names all the time and is excited to see you guys next month.