Friday, January 13, 2012

19 Months, and it's been a GREAT week!

We've had a great week around here.  It started with finally (mostly) getting rid of all the nasties he was dealing with, and a new car seat!  This is great for a couple of reasons.  Mostly, because the fact that he's outgrown his infant seat is further evidence that he's doing really, REALLY well.

Yeah, he's too big for an infant seat, too heavy and too long.  So he got this great, new, cushy ride.  He really seems to enjoy it, and if you could feel it, you would, too!  He's definitely got the best seat in the car.  It will actually grow and serve him for five years.  It's designed for kids up to 105 pounds, but if he were to reach that in five years, we'd really be in trouble.  My 8th grader isn't that big.  

 This is his first outing in the car with his new seat.  It's pretty early, and kinda cold, but otherwise, he was okay with it.  He actually seemed to enjoy the ride, and I enjoyed that it was easy to adjust the mirror to check on him, instead of having to rely only on his monitors to tell me what was happening.  His little duck is a wonderful aromatherapy microwavable toy that stays warm a long time.  Good thing, too, 'cause this kid wants nothing to do with hats and coats.  Who cares how cold it is anyway?  (I do!)

Today was also a red-letter day at the audiologist.  We have seen a slight difference, sometimes, as Aaron wears his hearing aids.  They certainly do something, but he also appears to hear a little without them.  But it's nothing like the difference I hoped we'd find.  He just doesn't react much to sounds.  For a while, I thought that was how he just was.   Then, at our last visit, we tried a bone conduction test.  It was obvious, quickly, that these were new sensations.  These noises were noises that he hadn't been exposed to before, at least not inside his head.

So today, the audiologist and I spoke of something called the BAHA.  It puts sound into the brain through the bones, bypassing the middle ear.  For adults and older kids, it's anchored into the skull, but for babies and small children, their bones aren't thick enough, so they use a band.  Anyway, we tried some more testing today, because to use them, the hearing has to be able to be corrected to a significant degree.  It was so fun!!  His hearing, with the BAHA, was almost in the normal range.  It was stressful to him, you could tell by watching his face.  When I took his hands in mine to help comfort him, it was even more obvious when he would hear things.  Even if his eyes only moved a little, every time there was a noise, his little hands tightened.  I can only imagine after having all sounds so muffled how strange it might be to be hearing.

The audiologist has a loaner aid that we'll trial next time we go back.  There is only one set, so we'll have to stay at the clinic, but we'll stay longer and walk around and see how he likes it.  If it all goes well, and we think it will, we'll start the approval process to get him one.  It will take a while, because it's that old supply and demand.  There is only one supplier, so they can demand almost whatever they want.  But hopefully, maybe by summer time, he'll be hearing much better.

I couldn't believe the results we were getting today.  His tests with the hearing aids that he has now were better than without, but still had a fairly significant hearing deficit.  This put him in the mild to moderate hearing loss, pretty darn near normal.  He got an A+ for today's visit.

Finally, around 8 p.m. each night, I turn into the mad scientist and our kitchen becomes my lab.  Since his return to health, I've started switching him over to the pediatric formula, but much slower.  Thank heavens (again) for algebra teachers.  Because he gets all his fluids through his feedings, it's important that we don't change that fluid balance.  And for nutritional reasons, we need to keep his calorie count the same, too.  But the old formula had 24 kcal (calories like we measure in food) per ounce.  The new formula is 30 kcal per ounce, so denser.  Because we need to switch slowly, for the first 3 days he got 75% of his calories from his old formula and 25% from his new.  The next three days is 50/50, and the last three days will be 75% new and 25% old.  If all goes well, on day ten, he'll be 100% on his new formula.

So the trick was to figure out how many calories total, and then the percentages necessary for each.  Then I have to add in the amount of water needed to bring each feeding up to the same amount of fluid he was getting before.  So here goes:  (N is neosure, old stuff.  C is compleat, new stuff.  H2O, well, yeah, water, and all units are milliliters)   Day 1-3:  75N+20C+6H2O day, 282N+84C+10H2O night.  Day 4-6: 50N+38C+12H2O day, 188N+168C+20H2O night.  Day 7-9: 25N+58C+17H2O day, 94N+252C+30H2O night.  Day 10: 75N+25H2O day, 330N+45H2O night.  Yeah, like I said, the mad scientist.  Thank heavens for dietitians who've given me the formulas to know how many calories he needs, and also for algebra teachers who make it possible to figure it out, even if doing so gives me more gray hairs than I had before.

Back when we first found out about Aaron's Trisomy 18, we also learned about the statistics.  How so many of these little one's lives are measured in minutes, hours, and days.  I remember telling my doctor that I felt that would not be the case with him.  I spoke with her about this just days after we found out and told her that I just really felt his life would be longer.  That it would be measured in weeks and months, rather than hours and days.  She also said she didn't know why, but she felt the same possibility.  Happy 19 Months, little miracle!  And many, many, many more.  We love you.

1 comment:

  1. he looks so good!! he must have parents that love him:)