Spelling Genius??

I don't know that we can declare genius status yet, but we decided to see just how many words Peter is spelling these days, and we get at least 50! He is only 3 years and 4 months old and can spell several 2 letter, 3 letter, 4 letter, 5 letter, 6 letter, and even an 8 letter word accurately. OK, he still isn't jumping or running, and he still isn't eating table food, but what a curiosity is his spelling capability.

The other neat thing we see is how much he has progressed in what he can do physically. We finally captured the backwards bear walk on video before he moves on to some other trick and leaves this one behind. He is now independent on stairs if there is a railing or something else to hold onto. We still hover nearby to catch him if he should stumble, but his confidence and skill are gaining. We are in the process of attempting to learn how to pedal a tiny "Big Wheel" so he can ride in the driveway with his siblings. He is also walking around the block twice a day on many days, versus just once a day, for a total of a mile and a half a day!

One last hurrah is that we are up to 100mL of elecare every two hours now. He can drink the 100mL all in one sitting. He takes 5 feeds like that per day, and then nothing enterally overnight. He is still on TPN and Omegaven 7 nights a week for 12 hours per night, but we are having dreams of reducing some of that now that he is up so far in feeds and still not needing to be vented at night via G tube.

Spelling:


Backwards bear walk: (forgive the protesting halfway through, and the overly-exuberant-mom-talk, I goofed on the first three attempts at videotaping and he was ready to be done the bear walk by the time I finally got the video recording going properly.)

February's Boston Visit

Peter had the best check-up to date when we went up in late February. He went in spelling words - "a-p-p-l-e is apple," "J is for Jill," "v-i-o-l-i-n is violin," and so on. I have never seen a three year old spell like he does, but Dr. Puder and Kathy Gura say that the Omegaven kids all seem to be really smart, so perhaps it is that good fish oil at work yet again.

After the spelling impressed everyone we went on to focus on his growth and behold, Peter has grown in height and weight, and not just following the curve this time. He grew almost 4cm in two months, and the weight gain is not fluid weight, it is real weight. Dr. Kamin felt his abdomen and we all agree that his abdomen doesn't have the feel it used to. Instead of feeling a little spongy with fluid along the sides, it feels more solid.

Peter had essentially been able to keep the G tube closed for the last month and a half also, which was huge progress compared to our December visit where Peter was needing the G tube put to drainage overnight every night in November and December.

We dropped the dextrose in the TPN a little bit and made plans to advance feeds further. He was and still is at 26 calorie elecare and it was felt he can stay there. We have been working on changing his feeds from 45 mL every hour to 90 mL every two hours and we just reached that goal in the last week. So far, so good. When we get to 115mL every two hours we get to drop a little TPN and begin to try our hand with baby food again.

Currently he takes 10mL of stage 1 baby fruit with his probiotics, but we have not pushed foods further since the focus has been on advancing elecare. Peter is the type of child that does better with one change at a time versus multiple changes, so we can figure out what causes problems more easily (usually more easily said than done though). We are stocked with stage 2 foods in anticipation, but also know that the last two times we fiddled with baby food he blocked up. Hopefully he'll do better this time... we think we'll be able to try the baby foods in another week or so. This time he is on probiotics, so we'll see if that is helpful with the baby foods advancing. Maybe a happier intestine will be less likely to block up. Blockage could also be from stricture, so we'll see as we go along.

More photos to come along soon. :)