Never mind the fact that I haven’t posted anything in a while. I’ve been busy and/or lazy. That… and things have been sailing along fairly smoothly.

For the past few months, Miles has been drooling a lot, fussing a lot, and generally crying more than ever. Today, it’s all paid off, as his first tooth has finally broken through. It’s been 3 months in the making, but it finally came through. Bottom front… it’s sharp like a shark’s tooth. We may have to change his nickname from Chugsy to Chompsy to commemorate the occasion.

Chomping at the Bit

Since the birth of Miles, we have been immersed in a bittersweet world of bad puns and good will. The next big play on words is the 2009 Step Up for Down Syndrome walk at Como Park in St. Paul on September 20th. The walk is the main source of fundraising for the Minnesota Down Syndrome Association, which uses the money for programming and materials like the information packets we received in the hospital when Miles was born and the books and DVDs that were mailed to us after we returned home.

We have set up a donation site that can be used to contribute funds to the walk. It’s simple, fast and secure: http://www.firstgiving.com/mileswolfe

We’d like to thank all of our friends and family who have supported us so far. We know that you will continue to support us in whatever way you can.

If you would like to join us on the walk, please contact us and we can make arrangements.

Step Up for Down Syndrome

Chugs McGee, Chugsy, or Sir Chugs-A-Lot
When Miles decided to drink, he usually chugs it like a freshman at college. The McGee part is a carryover from one of Nora’s nicknames, Poops McGee.
Fidget, or Fidget McGee
When he isn’t resting or eating peacefully, this man is waiving his arms and bobbing his head. He’s always searching for something new to look at.
Distraction Jackson
Feeding time can be a little frustrating at times. Even though Miles may be hungry enough to eat a My Little Pony, he’s easily distracted. So, in lieu of sucking on the bottle, he’ll be staring off to the left or the right at who knows what. Sometimes we joke that he’s staring at a ghost, because there’s nothing on the wall that he’s looking at.
Mr. Mi-Mi or Super Mi-Mi
Nora came up with this one all on her own. You can hear her using it during the Miles Rolls Over video
Teg
NERD ALERT! This nickname really isn’t related to any specific behavior of Miles’. It’s quite simply a reference to Miles Teg from the Dune book series.

The Many Nicknames of Miles Chauncey

Things are going good. After trying out many different combinations of formula with rice cereal and probiotics, we’ve finally gotten some consistency with feeding and pooping.

Miles is showing more and more signs of being a happy child. He now takes breaks during feeds to smile at us. And he’s doing so with more than just his mouth. His whole face lights up… it’s wonderful.

He is also still rolling over from front to back. On a few occasions (while lying on his back), he has lifted a leg up and pulled an arm across his body. Seems like he is gearing up for a back to front roll. I’ve helped him complete the maneuver a few times, but nothing he hasn’t gone solo yet. No big deal, he’d be way ahead of the game if he did it now, anyways.

We also have an excellent sleeper on our hands. He is typically going down for bed around 7pm and not waking up until 5 or 6 in the morning. As you could imagine, we thank our lucky stars for this.

It hasn’t all been roses, though. There were 2 nights this last week when Miles had some major reflux freak-outs. At least, we think it was reflux-related. It was around bed time when he would suddenly begin wailing in pain. A few gulping swallows later, he’d be calm as a caterpillar. Five minutes after that, he’d be wailing again.

All in all, the State of Miles is strong.

State of Miles: July 09

We’ve been seeing Dr. Maxwell for a few months now, and we absolutely love him. He’s smart, good with the kids, and best of all… funny. In particular, he’s got some awesomely funny analogies. Here are some of our favorite so far (paraphrased).

Genetics Analogy:
“Every kid is different, even siblings. Just because one kid sleeps easy, it doesn’t mean the next one is going to. Both kids are made with the same DNA from Mom and Dad… they’re just put together differently. If you take ground beef, lettuce and tomatoes and put them together one way, you’ve got a hamburger… put them together another way and you’ve got a taco.”

Attenuated Vaccine Analogy:
“The new roto-virus vaccine is attenuated, which means it’s crippled. Your body will still form antibodies and prepare to defend against the real thing. It’s just much easier with the crippled virus. Imagine playing against Tiger Woods. In a regular game, he’ll beat your pants off. But if you cut off his arms, he’s crippled. You’re still playing against Tiger Woods, but he’s crippled and much easier to beat.”

Dr. Analogy

We’ve exhausted the Alimentum and didn’t see much improvement in Miles’ reflux or squirminess following feedings. So, we’re back to the Genltlease formula. Only this time, we’re adding Probiotics. According to the doc (and various other online sources), the Probiotics are healthy bacteria that will help Miles break down his food in a more efficient manner. The hope is that it will speed up his digestion and limit the amount of time that reflux can happen.

So far, so good. He is less squirmy post-feeding that he used to be, and he is pretty much finishing all of his bottles in a timely manner. The best part is that his poop is once again exiting at a normal pace.

A Regular Feeding (sort of)

We’ve been trying various methods to control/eliminate Miles’ reflux symptoms. We’ve tried soy formula with no change in behavior, so we’ve moved on to the hypoallergenic stuff to see if the reflux is a reaction to milk proteins. The Alimentum formula is already broken down so that Miles’ stomach doesn’t need to work as hard to digest it.

It’s been 48 hours, and the only real change I’ve noticed is that he poops more. A lot more. It seems like every other diaper is poop. And it’s not a nice solid poop. It’s the creamy kind that gets up under (and around) his junk.

I’m not-so-secretly hoping that this formula doesn’t solve the reflux. I’d much rather find a cheaper and less poopy solution. Our next gambit is going to be with probiotics.

P.S. Alimentum smells bad

A Pooping Machine

Things are holding steady with Miles. Well… mostly, anyhow. He’s still rolling over from belly to back, so it’s good to know that the rollover we got on video wasn’t a fluke. His neck is now strong enough to sit on the björn face out, which makes me happy. I always enjoyed combining with Nora to make the Nora 2000 daddy bot. Now, it’s Miles’ turn.

He’s still been having some reflux issues, so we’re trying out Prilosec instead of Zantac. It’s been a week, and there’s not much change. Sarah things the Prilosec might even be worse than the Zantac.

On the plus side, he’s had a really healthy appetite. He’s been getting better with timing his breathing and swallowing. Just yesterday, I had a feeding session with him where I didn’t have to pull the bottle to give him a break. He would suck, rest and swallow all on his own.

Other than that, he’s sleeping and filling his diapers on a regular schedule.

State of the Miles

Holy smokers! Miles rolled over at 1 month old!

Miles Rolls Over

Miles has been having a few difficulties with feeding. His mouth is smaller, causing him to have trouble squeezing the stage 1 nipples — or in the case of Vent Aire bottles, “slow” stage. It was taking him an hour or more to down a single ounce with those. So, we moved on to the  ”fast flow” nipples (We’re still not sure why Vent Aire doesn’t make a “medium flow” nipple). That was working better, but almost too fast.

Miles began exhibiting difficulties breathing while eating. Sometimes, it seemed like he would be choking. We tried going back to the “slow” nipples, but some of the breathing symptoms persisted.

We tried Doc Brown bottles, but the results were the same.

We tried the Avent bottles, but Miles didn’t care for the nipples.

Finally, we scheduled a swallow study to see if there was any way they can tell what the problem was. After trying several of the same bottle/nipple combinations we tried, they began adding rice cereal to the formula. It turns out that Miles has a case of Aspiration. Thickening the formula with rice had helped Miles gain more control over the flow of formula so that he could time his breathing better. It all worked great at the hospital.

It was a different story when we got home. They suggested we do a 1-tablespoon to 1-ounce ratio of rice to formula. That seemed to be took thick for Miles at home, so we moved to 2-tablespoons per 3 ounces of formula. That has been working much better.

But he’s still having some breathing issues. From time to time, he will absolutely freak out and it’s as if he’s hyper ventilating (maybe he is). He gets so worked up, that trying to feed him becomes an absolute nightmare. He had the perfect feeding this morning at 5 am. Calm breathing, smooth sucking, and controlled swallowing. I took 3 ounces and burped in 20 minutes. Three hours later, all bets were off. It was as if he had forgotten what to do with the nipple and when to breathe.

We’re getting better with our patience, but I hope that one of these days something will click and we can take a load of stress off of our backs.

Formula: 409 Attempts