Saturday, July 28, 2012

The Business of Eating

I talked to our Occupational Therapist about my lil 30 hour tube experiment, where we tried to feed Mr Boy without the tube in his nose. I was hoping she would applaud my efforts and then give me the special key that I had been missing so that this month it would work seamlessly. Unfortunately, she explained to me why it didn't work and why it probably never will. :( But its ok. I am a very logical person so the core of my frustration came from not understanding why he wouldn't just eat and why we couldn't turn his pump up and run the formula into him faster. But she explained it to me in a way that makes perfect sense and now that I know what to expect and why these expectations make sense, I can be less frustrated when this process takes years instead of months.

You see, we are trying to get Mr Boy to be able to take (through the tube) 7oz of formula (almost a whole bottle) in 30 minutes, which any normal baby can do easily. I forget Mr Boy is not "normal" and expect his tummy to expand quickly and just do it. However, in 2 months he's gone from taking 7oz gradually over 2 hours to taking it over 1 hour and 45 minutes. Not much of a difference really, but the faster we try to get him to take it, the more he pukes here and there, and we take a step forward and two steps back. The therapist explained that not only does Mr Boy's tummy have to adjust, but his whole digestive system has to adapt.  The NICU "confirmed" after just a few days of Mr Boy eating well as a baby, that he would eat just fine and his intestines were long enough to be fine, but days after releasing Mr Boy, he began the reflux that persists today so I guess it still could be his short intestines in play here.

I don't know how I forget these things, but since Mr Boy is just a regular little kid to me, I easily forget that his body can't digest what other kiddos bodies can in the same amount of time. So in conclusion, I guess I finally agree with the doctor, that this will probably take years to tackle. I can be content with the tiny progress if tiny progress makes logical sense. I just have to adjust my expectations to match logic.

This morning I had renewed energy to feed Mr Boy. I sit him down and have him "eat/play" with food every day, but some weeks are better than others. Sometimes he will slightly chew and somewhat swallow bits of food and other weeks he will only hold it in his mouth for a while, then spit it out and hand it back. Mr Boy has been obsessed with gold fish lately and has a hankering for ranch dressing. No eating, mind you, just dipping and licking. So I got in a rut of offering him only fishys with ranch and the occasional slim jim. :) "Bold Flavors" is the phrase his therapist uses to describe what his for palette should consist of. And Mr Boy can easily swallow foods the consistency of apple sauce but refuses to chew items as hard as gold fish, so I went a little crazy buying products with bold flavor and mushy consistency to try and ease him into chewing.

At one time I planned on only feeding my kids healthy foods, but when the going gets tough, one will try anything. Thus, we have digressed:

The only issue is that even if Mr Boy takes a nibble, I have to finish the rest of it off myself! Who am I kidding... I can't complain! :) yum!

Sunday, July 22, 2012

Mr. Boy walks!

Mr. Boy took his first two tiny steps June 7th and has been working on mastering this art, with passionate vigor, ever since.  He can now walk the length of the living room, turn the corner, and go halfway to the dining room before falling! And to think... we didn't even know if Mr Boy would be able to walk, much less walk so well! Praise the Lord!

excited that he can balance without holding on

The downward dog yoga move.

He can push his walker to the end of the block!

Monday, July 9, 2012

Surgery Date

We just found out that Mr Boy's next surgery, we call it, "The Big One," will be October 15th. The surgery will include 3 surgeons: a Urologist to put his bladder back inside his body, creating a vesicostomy and perform other reconstructive surgery; a General Surgeon to put ab muscles over his Omphalocele, and insert a feeding tube port in his side which connects to his stomach (to replace the one taped to his face); and an Orthopedic Surgeon to cut his pelvic bones and fuse them together where they belong. It will be a very long, complicated surgery and there are just so many things that could go wrong both during and after the surgery. Thankfully we have a loving Father watching over Mr Boy! Please be in prayer! I know it's 3 months away but they will fly by! 

Monday, July 2, 2012

Boat Phone

Apparently I talk on the phone constantly because Mr Boy seems to be able to make any object into a phone and talk just like mommy. In this video we are eavesdropping on a particularly long conversation. Be on guard because you never know when Mr Boy might be calling you from his boat phone... or thermometer phone, spoon phone, toy phone, box phone, banana phone...