Milestones

Three times in the last week, we’ve walked in to Luke’s room in the morning, and he’s sitting up in his crib.

Another milestone this week is downright miraculous. Tuesday night, Luke and I were on a blanket in my parents’ backyard. I had just finished a plate of pot roast, and set it aside. Luke spied the plate and spied something he wanted. Instead of fussing and whining for it, he took matters into his own hands. Here is a video recreation:

Friday Video Frenzy!

We took several videos of Mary and Luke in the past few days.  Here they are for your pleasure.

Mary and Luke take a bath

Cooking with Mary and Momma

Luke wiggles his nose

Luke stands.  (Luke is a 15 month old with Prader-Willi Syndrome (upd) which means he has very low muscle tone.  A normal 15 month old walks by this age, but Luke’s condition makes him unable to even crawl at this age.  Standing is a big deal.)

Back, finally!

Anyone who says “parenting is boring” is obviously doing it wrong.

To recap, Luke had an emergency room visit due to a high fever and aggravated cold.  We wanted to rule out pneumonia.  Doc said no pneumonia or flu, just a little bronchitis and an ear infection.  Prescribed z-max.

We planned to leave Monday to return home, but Mikki had a “severe” sinus headache and went to the urgent care facility to get her head checked, causing us to stay an extra night.  Tuesday, after we left for home, Mikki and I decided it would be good for me, Mary, and Luke to go to the urgent care after our return to check on our various colds/coughs.  At the doc’s office, we discovered Luke had a case of aspiration pneumonia created when he aspirated after vomiting as a side effect to his antibiotic for treating bronchitis and ear infection.  Great.  Antibiotics failed to clear up his ear infection and caused him to catch pneumonia.  Merry freakin’ Christmas.  Anyway, Luke got a shot and some antibiotics, then we followed up the next day with his pediatrician who gave him another shot and told us to continue Luke’s antibiotics.  He’s been much better.  Hasn’t had a fever at all, coughing has greatly decreased, no more wheezing.  Thank God we didn’t need a hospital stay.

In addition, the doctor diagnosed Mary with an ear infection and bronchitis, and me with bronchitis as well.  Today we’re all on antibiotics, feel better, and show almost no sign of sickness.  The video below is Mary 30 minutes after returning from the doctor with an ear infection.

She gave us no indication that her ears hurt.

Anyway, we had a great time with the family.  Karson (5, PWS UPD) finally got to hold Luke, and all members of the family fell in love with Luke.  Enjoy the pics.

  • Karson’s Mom, Mandy, with Luke

Luke and Karson (both PWS UPD)

We drove around town looking at Christmas lights. At one point, someone noticed Mary and Luke holding hands. The sweetness of my children!

 

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Paging Dr….

For the past two weeks, every member of our family has battled colds. Mary succumbed first, but has achieved nearly a full recovery. I was second, then Luke, then Mikki, but the three of us have not recovered.

Today, Luke slept nearly the entire day, and when he awoke early this evening, he let out a cry which prompted us to take his temperature. 104.

Luke’s condition includes very weak swallowing muscles which react more slowly than in a typical person. This decreased reaction time makes him more susceptible to aspirating thin liquids. The combination of week-long cough and high fever spurred a trip to the ER.

The short version is that after less than two hours, a flu test, and a chest x-ray, the doctor decided Luke had neither the flu nor pneumonia. Diagnosis? Bronchitis and ear infection to be treated with antibiotics.

As a side note, I brought Luke’s entire medical history on a jump drive for quick access. The doctor decided he didn’t need to see it, so I explained Prader-Willi Syndrome in a 30 second elevator speech. A couple minutes later, the doctor asked, “has he been pulling on his ears?” I responded politely, “He doesn’t know he has ears, and if he did, he wouldn’t have the strength to pull on them. So, no. He hasn’t been pulling on his ears.” The doctor said nothing.

The doc said it was fine to continue with our travel plans for Christmas, that the antibiotics would help Luke feel better quickly and help rid his body of any infection.

Yeah, that’s not gonna work

After agonizing over the oxygen situation, Mikki and I decided that there’s no practical way to take Luke off the oxygen while having it readily available for him during an apnea episode. So he’ll stay on it until he stops having apnea episodes or a specialist who knows him well recommends weaning.

That being said, Luke has had several crying fits in the past few days, but seems to have learned to collect himself before they progress to apnea episodes. Good for our little guy!

Day home with Luke

Mikki is off at school today for a day-long holiday food pantry project with her students. Mary has been sent to daycare, so Luke and I are dude-ing it up in the pad.

After living with nothing but females for the last five years (wife, daughter, dogs), it’s nice to have another testosterone-based carbon unit in the house.

Luke’s feeding

Luke’s throat lacks the strength and coordination to swallow properly, and his sucking muscles are very weak.  This combination of weakness creates a Bermuda line segment of sorts which makes bottle feeding particularly hazardous.  Because Luke’s throat does not function properly, there exists the possibility that he could aspirate any liquid traveling down his throat.

In order to avoid aspiration, we add thickener to Luke’s formula so it travels more slowly down his throat so he has time to swallow.  The thickened formula requires Luke to work harder to suck, thus exhausting him before he can finish his bottle.  Whatever formula he doesn’t finish by bottle, we feed him with the pump through the “g-tube” in his stomach.

When feeding Luke, I have a “three strikes” rule.  If he coughs or chokes three times, I stop the bottle feeding.  Each time he chokes, the danger increases that he may aspirate his formula, which could cause “aspiration pneumonia”.

Additionally, every time Luke chokes or cries, it weakens his throat muscles which results in his breathing to take on a wheezing or hoarse rough/gravel sound.  Luke usually recovers from the wheezing by the next day.

Finally, in addition to all the others, Luke has acid-reflux, which often manifests itself in spitting up, which can also result in aspiration pneumonia if he chokes on his own vomit.  Feeding him makes my soul very unsettled, but it’s something with which I will eventually become more comfortable and will not panic so easily.