Refridgerator Blues

So over the past month we have been hit with one crisis after another... and as most of you know, I am not super about crisis. In fact without Jon I would go crazy, so the fact that this month's long list has been handled pretty well thus far is nothing short of amazing. Well, it all ended last night. After the car battery, Taylor breaking Jon's glasses, someone breaking Livi's glasses, AND the air conditioner (which a few little unwelcomed mice built a nest in the electrical compartment and had lunch on the wires...) last night I took a glass of milk that tasted like warm yogurt... YUCK! In fact, the milk had been warm all day, but I stupidly brushed it off as the house being warm (the A/C was fixed yesterday afternoon) well... no, The WHOLE refrigerator was warm. Just Great! My panic button is on super alert... blaring with loud wrenching noises and causing me to be nauseous. How much of this can one person/family take???

Where is your button?

As a response to this question, most kids lift their shirts and point to their belly buttons, not Taylor. Taylor hikes his little shirt up to his chin, where he cleverly secures it so that it can't fall down, and points to the plastic cap that lays over his skin creating a tube to his stomach. Taylor can open and close his "mic-key button", put a syringe in it, and remove and, on occasion, attach his feeding extension tubing. None of this was encouraged per say, but mostly just learned from multiple daily feedings for the last two years and one month. I joke sometimes that Occupational therapy didn't get him over the fine motor delays, but tube feedings did.

Since January Taylor's oral consumption of food has made remarkable progress. I don't really know if it was all the "tricks" we tried, or if it was weekly therapy, or the types of food, or anything that we actually did. I tend to believe that it was shear will and determination to be just like Alivya and eat what Alivya (generally speaking) eats, the way Alivya eats.

Sometime around the beginning of the year, he started consuming baby jar food very regularly. We moved quickly from very smooth consistencies to soft solid bits, to textures. It was amazing. We had decided around the end of February that it was time to introduce table foods, and it was recommended to try grinding them in a fancy (not really) little contraption. We had just started doing this with canned veggies and fruits, noodles and meats when we came down with this nasty stomach virus. You're welcome to visit our archives to read more about it... it was titled, "buckets of vomit" and "vomit ville". Needless to say, there are few meals during that period that any of us continue to part take in now. So the grinding was very short lived. After his stomach finally began to heal, he wanted nothing to do with the nasty ground stuff. So we just cut all the canned stuff up to bite sized pieces. This was the beginning of Taylor's jet speed projection into eating like a "big boy".

By early May, Taylor had mastered the art of table food eating. With the exception of most fruits and nearly all veggies, he eats almost anything. Some of the veggie stuff I think is normal two year stubborn will, but the fruits seem to be more of a texture thing since he ate them all like water when he was in his baby food stage. We have tried lots of tricks, but hiding them in yogurt, pudding, ice cream, and jello have not been effective at all. He does not even like whipped topping, and has tired of applesauce consistency stuff. Over all, we are super pleased with his progress, and although we still offer plenty of veggies and fruits, we don't get too hung up on it. His tube feeding dependency in January was 1200cc per day, today he receives only 300cc daily. A quarter of what he needed just seven months ago!

Taylor's biggest challenge since April has been drinking. He didn't show any interest in taking fluids orally. We have worked really hard on this, and with some timing tweaks and maybe some sweet incentives, he takes about three ounces daily now. Last week he finally caught on to the concept of sucking from a sippy. Although he can (and does during meals) drink from an open cup, sippy allows him to focus on drinking rather than playing. Open cups allow for tons of fun dumping, dunking, and dribbling, not to mention stirring and shaking. We also found that he needs open cups served in very small quantities. I have taken to filling a cup for myself, so when he takes his swallow and asks for more, I don't have to keep running to the fridge.

The dietitian weighs and measures Taylor every other week. Her last two visits have shown a weight gain of one pound six and a half ounces. Our goal is to see that T gets to the 25th percentile by his third birthday, at this rate, he would blow that goal out of the water. Therefore, we have agreed to begin weaning his tube supplements down by two ounces at each visit, as long as he keeps on track to be in the 25th percentile by December. This means that we could see Taylor's dependence upon the tube cease to exist by the end of the year. His GI said they will leave the tube in for six months after its last use, then it comes out for good.

I can't believe the end might be in sight. I am so excited for Taylor, and looking forward to teaching about his real button!

Pee Pee

Last Monday I began intensive potty training with Alivya. She is doing great at sitting on the potty, which was our first challenge. Last Tuesday, she put a couple little drops in the potty for Daddy. I was so proud of her and we praised her well. After she went to bed, I whined about how I was working so hard on it, and he got the pee pee. How funny it would have been to be a bee on the wall for that little discussion. So today right before nap, I was reading Calliou gets a potty to Livi while she sat on the potty. Suddenly it seemed like she understood. When we finish reading, I always say, should we see if you put any pee pee in the potty? And Livi gets up, and we look, and its always empty. NOT TODAY!!!! There was a tiny little dribble sitting there at the bottom of the potty. She looked at it so curiously, so I said "that's your pee pee"!!! We clapped and cheered and jumped up and down. I have never been so proud of a tiny drop of urine in my life! I gave her TWO m&ms and told her how proud and happy it made me. We dumped her pee pee down "mommy's potty", flushed it away, and said, "bye bye pee pee." Then I was ordered to "wash hands", which I thought was adorable. I think this is a second step in the direction of diaper freedom! Yeah Alivya!!!!!

MIA

I would never be one to say that our life is "boring" so why haven't we been writing? Well, that would be because our life has been so busy that we simply haven't had time. When we are not running around getting things done, we are in the pool or give the kids some sun time. We've been reading, working, doing studio stuff, and just trying to keep everything up. Monday was our first day officially on our own. Taylor was discharged from the services of our home health agency on Friday. Its been good, getting up at 7:30am means that I am wore out by 9:30pm when Jon wants to be getting to bed. Not that I slept til noon every day, but even 8:30 - 9 was a nice sleep in.

I finished working on a portfolio of our photography work so far, and we organized our equipment bags. After loosing a battery and the charger, we decided to keep logs of all our equipment. Before each shoot we would check the equipment out like at the library, and before leaving the shoot, we will check it back in. We also met with an artist in the area who specializes in videography. We are considering contracting with her to make her services available to our customers.

We found two programs at the library that were appropriate for T&A, so we have been going there twice a week also. Last weekend we went to Bay Beach with mom and Evan. Bay Beach is a small local amusement park in Green Bay (for those of you not from this area). Taylor was afraid of nearly everything, but we did get him on the helicopters and the train with Jon. Mom also took him on the Merry-go-round. Alivya rode on everything, she couldn't get enough. "More ride" she would say after each one. I will post pix once Jon uploads them. We had a windy picnic then played on the playground for a while. That ended after Livi fell from a ladder. She was shook up, but physically unhurt. Later that night we dropped them off at my Mom's house. She volunteered to keep them overnight. A rare opportunity for us. We listened to a book that we started a few weeks earlier, then went to bed early. Jon was beat.