Sunday, October 25, 2009

Birthday montage

A video montage of the highlights of Max's first birthday.

Max's First Birthday from Codered Summer on Vimeo.

Saturday, October 24, 2009

Birthday boy

Man of letters
Originally uploaded by andreas.lehnert
Here's a pic of Max with his latest hobby: playing with (and chewing on) the refrigerator letters. How germy could they be, really?

Today is Max and Ada's birthday. This time of year, especially this day, is filled with mixed emotions. We celebrate the progress Max has made over his first year and hope for his continued improvement and happiness. At the same time our hearts ache for Ada, the life she never knew, and our lives without her.

Wednesday, October 14, 2009

Max practices eating

As Carolyn explained yesterday, we plan to slowly step down the amount of food delivered to Max overnight and attempt to make it up with increased feedings of calorie-rich formula during the day. The ultimate goal is for Max to say good-bye to his feeding tube without requiring surgery to place a semi-permanent g-tube. In effect, one day in the next couple of months we envision pulling out Max's ng tube and simply not replacing it. (PS Did everyone get Carolyn's allusion to Robert Graves?)

However, year-old babies like Max don't live by bottle feedings alone. After all, he's got to put those sharp little teeth to good use. In the video below, a secret camera records Max's attempts to get down some very small crumbs of teething biscuits. He's clearly interested and working hard to get his fingers to cooperate: picking up the crumb and guiding it to his mouth is harder than you might expect. Why then does Max feel the need to transfer the precious crumb from one hand to the other? Practice? (Link to video here in case the embedded player doesn't work for you.)

Max Eating from Codered Summer on Vimeo.

Monday, October 12, 2009

Goodbye to all that

We're not sure, but we think Max waved. At dinner tonight, Felix was waving and greeting each of us. When Felix yelled "HELLO MAX" and waved to him, Max lifted his arm and made a waving/flailing motion. Of course we tested him a couple more times. And we'll retest tomorrow. This corresponds with a couple of nights of Max not sleeping very well. Our hypotheses are: (1) developmental leap; (2) sugar (he tasted some icing on a cupcake, on the sly); (3) separation anxiety (he gets really irritated if we walk out of the room).

Max seems to be over his ear infection and has been pretty happy this past week. We are tweaking the nighttime feeds, reducing the amount by about 2 ounces (so now he gets about 16 ounces, or 480 ml, through the pump at night), and we're transitioning to all formula. The hope is that he will make it up in PO during the day. Next weight check: Monday 10/26. Maybe Max will be able to wave goodbye to the pump in the next couple of months.

Monday, October 5, 2009

All ears

About a week ago, Max started exhibiting some new behaviors -- whacking himself on the left side of the head, not sleeping well, hating diaper changes, and to top it all off--running a fever starting on Wednesday morning. We took him to the pediatrician, who diagnosed an ear infection and put him on a 10-day course of an antibiotic (Amoxicillin). Max continued to have fever and a rough couple of days when he was cranky and just not his sunny, active self. On Sunday, his chest and back were covered in spots. Today, we took him back to the pediatrician, who determined that Max is allergic to the Amoxicillin, and put him on a 3-day course of an alternative (Zithromax). His ear infection is looking better but still with him. Max is already showing signs of returning to a happier state.

As soon as the ear infection is beat back, we have a plan (with the blessing of the GI docs) to cut back Max's nighttime feeds and see what he can take by mouth during the day. We don't want to try this while he's not feeling well. We have an appointment with the GI clinic at the end of this month to report in.

In other news, Max was just approved for a Medicaid waiver (the Elderly or Disabled with Consumer Direction, or EDCD waiver). This is typically for older people, but the local Early Intervention staff told us that Max might be eligible and helped us figure out how to apply. This will allow us to use a nursing agency to provide nighttime respite care. We're still figuring out exactly what the parameters of the program are.

This afternoon, Max slept from 3-6 p.m. That meant he didn't go to bed for the night until almost 8 p.m. And THAT meant that the four of us got to have dinner together and play together in the sunroom tonight. And that was really nice.