Jimmie took his first step Saturday evening! He was at our Grandparents house for February birthday celebrations. He was standing by me and facing his momma. He was standing there without holding anything and you could really see that he was psyching himself up and then he did IT! He took a step. All of us who were in there cheered while Rachael swept him up for a hug and he grinned. Go Jimmie go! (-:
Rachael sent me a summary of a typical day for Jimmie eating wise.
In Rachael's words:
"I make my own baby food and freeze it in ice cube trays. I always add either olive oil or butter for extra calories.
6:30 am 2 1/2 cubes of sweet potatoes, 1/4 banana, and rice puffs
8:00am tube fed 130 mils breast milk (no fortifier)
11:00am 2 1/2 tablespoons protein smoothie, 1 cube carrots, and rice puffs, tube fed 120 mils breast milk
2:00pm 2 table spoons apple sauce, 1/4 banana, and rice puffs, tube fed 120 mils breast milk
5:00pm 1 cube peas, 1 cube carrots, 2 teaspoons turkey. 2 tablespoons oatmeal, 6 mini chocolate chips.
5:30pm tube fed 108 mils breast milk
7:00pm a few bites of my black beans, rice, and guacamole. (he wanted it)
8:00pm tube fed 130 mils beast milk."
I think she still does at tube feed at 2am as well . . .
Rachael is still faithfully pumping her breast milk for Jimmie. This has been such a labor of love and a sacrifice to pump around the clock for over a year now to supply Jimmie with the absolute best nourishment he could have. I am in awe of her dedication. She is starting to see the light at the end of the tunnel though. Maybe soon Jimmie will be eating and drinking well enough and tolerating enough variety that Rach will be able to start weaning in earnest.
As you can see Jimmie is doing an awesome job eating solids. He has kept up this pace for a couple weeks now. The OT Dr. C thinks that in a matter of months his liquid intake by mouth will start catching up. Rachael is having to guess at what she gives him is his g-tube a lot of the time depending on how much he has just eaten. She has a base number to keep him hydrated and then she just tries to guess. If she over feeds him he pukes and that is not helpful. Keep praying that Jimmie will start sucking on a straw or his sippy soon. It will be such a dream for Rach and Justin when the day comes that Jimmie can self regulate his liquid intake safely and they don't need to tube feed anymore.
Jimmie has cut his first tooth and has a second one coming in soon!
I'll finish with the beautiful dance that our students did as a surprise for Rachael in honor of Jimmie's birthday!