Tuesday, July 28, 2009

Summer Foods Revealed...And Another Surgery





Elephant Ear and bluberries. No, Mikan still isn't "eating" them, but he likes to lick a lot of things...that counts for something.

We had an appointment with the ENT this week. She watched Mikan breathe with the PMV, without the PMV, and with a cap over the trach. She didn't like how he was retracting with his PMV and the cap. (She capped experimentally because she thought Mikan was outgrowing his trach naturally.) We've been using the PMV for 12 hours a day for about 3 weeks now. She said the retractions are probably one of 2 things: Nothing is wrong, it is just difficult for him to breathe around a trach, and he is ready to downsize. Or, he is growing more granulation tissue.

What do John and I think? We both think he has had mild retractions his whole life and they are probably just a symptom of being trached. The recommendation by the ENT was to do another scope before she made any final decisions about downsizing. She said now that if we scheduled another surgery 6 weeks after our last one then that would give the airway an appropriate amount of time to heal, and she could take one last look with a flexible scope. If the airway looks good, then she will downsize. If there is more tissue, then she will remove it, but if there is a significant amount, then it may delay downsizing. We are pretty optimistic about this. So we have another scope either at the end of August or early September.

Monday, July 27, 2009

Summer Food

See if you can name the food based on the pictures. A different food for each picture.







Accepting guesses now...

Tuesday, July 21, 2009

Laughter

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Mikan is starting to laugh. However, he has to be in a real good mood and aggressively be tickled.




The toad didn't cause any laughter.

Thursday, July 16, 2009

Mikan the Mastermind

Here is a series of scenes put together by Mikan and his cousins.

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To be continued...

Monday, July 13, 2009

Look Who's Talking...

Well...grunting.

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Mikan has been tolerating his PMV all day now, he even napped with it on today. Although he isn't overly vocal yet, he is eating (well, tasting) better. He prefers us to put foods on his lips and he will lick them off his face. Last night he tasted guacamole, salsa, and refried beans with us.

Tuesday, July 7, 2009

A Tribute and Inspiration

You didn't know Mikan (Josiah) was actually named after Michael Jackson.

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Mikan told us that he has decided to "make a change" in his life. He decided he is going to do a lot better with at least tasting his feedings.

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Mmmm...raspberries.



Raspberry pie for breakfast

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While we are happy with this change in his eating, we would also like him to start sitting up and crawling. He doesn't want to settle with this. He said "beat it" to such low aspirations.

Sunday, July 5, 2009

The Swordfight

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Mikan pre-haircut

4th of July Weekend

I finally copied some pictures onto a CD from my camera. Our camera is still malfunctioning. We had a pretty busy weekend visiting family over the holiday. Unfortunately, Mikan hasn't been healing as nicely as we anticipated from his surgery. He still bleeds after trach care and has a lot of secretions. Ever since the surgery he has needed suctioned more frequently than normal. I'm hoping this is just because he is trying to heal. He also still has bloody drainage around his trach stoma where they had to cut open some flaps of skin to remove some of the blockage. Furthermore, he just appears to be in more pain than we expected him to be experiencing a week post-surgery. We've tried the Passy Muir Valve twice, but he wouldn't tolerate it. He keeps gagging and crying. He never used to do this, so we're hoping it's just a sign that his airway isn't completely healed yet. We were told the swelling was supposed to go down by this weekend, but I'm not sure that it has yet.

Mikan's haircut



Mikan before surgery



At least he has a nicely shaped head for a preemie.



Mikan after surgery (still feeling the effects of the pain meds).