Next Step. . .Literally

Now that Connie is taking steps with help, we have noticed some low tone in his ankles-especially the right one. Following surgery he was low tone everywhere, so we're not sure if this is just some residual weakness that hasn't strengthened yet or if this is just something we've not noticed because he wasn't weight bearing much until now. Our PT is getting a script from the pediatrician for orthotics for his shoes. He'll probably get measurements sometime next week and as soon as we get through the red tape of insurance, etc. the turn around time is about two days or so. He'll have to wear these all the time except when sleeping or right after the bath. There's a new company called Sure Step that our PT likes because the orthotics don't limit range of motion nearly as badly. They don't go all the way up to the toes. I'll try to post pics of them after he's got 'em. She said he shouldn't need any special type of shoe and that a high top isn't probably the best b/c it's hard to get the orthotic into those type of shoes. She said just stray away from any shoe that has a very defined sole that goes way in at the arch.

Drumroll Please. . .

Because Connie gets to stay tubeless! We visited Dr. Brady today and I took along the food log of what he's been eating since Saturday and she was very impressed. She said as long as his weight stays okay (he loses less than a pound) she doesn't want the tube put back in. "We've got to strike while the iron is hot," was her comment about taking advantage of his interest right now. She said that with him drinking the whole milk and half and half as well as he is, there's no need to push any peptamen. She said for extra calories we can try adding carnation instant breakfast to his milk and another heart mom suggested putting avocado in fruit smoothies (thanks, Lisa!). I am so excited to feed him tomorrow. Dr. Brady was so excited for us. She called him a walking miracle and I shared with her our story from Easter mass and the stranger that foretold of his healing. She spent an extra 10-15 minutes in the exam room with us playing with Connie and watching him show off all his new tricks. Next time I get impatient with a doctor when they are not on time for an appointment, I'm going to remember today. She could have said that's great and left, but she took the time to kind of celebrate with me. It was a nice moment. We go back in a month and she wants the dietician to keep her updated with weight checks. After leaving there, we went down the hall to say hi to Dr. Bromberg's staff. Nurse Colleen was so excited to see him without his tube. They offered him a lollipop and we picked orange. He held on it and sucked and sucked and sucked. I was surprised (and relieved) he didn't try to bite it. On the way home we stopped by and visited all my friends at Harris Elementary (where I used to teach) because I couldn't resist the chance to show off WonderBoy! They were so pleased to see him doing so well. Finally we stopped off to see Grandma and Grandpa George for a minute before returning home for a late nap. He woke up at dinner time and ate like a champ. Greg fed him his bedtime snack and gave him his meds. I almost forgot to mention, Dr. Brady took Connie off the drug Reglan. Now he's only on three meds, 2X/day. When we go back in a month, if he's doing well, she'll take him off the Prevacid too! Unbelievable!

For those that want the boring details, here's what he ate today:
Breakfast
1 jar guava dessert mixed with cream of wheat with butter and sugar mixed in
4 oz. whole milk (the first 20 cc's was polishing off the rest of the half and half)
Lunch
1/2 jar strawberry applesauce with oatmeal
1/2 jar vegetable beef soup
2 oz. whole milk
10 tsp. mixed berry yogurt
6 tsp. whipped cream
Dinner
1/3 cup chicken noodle soup
4 bites of banana cream pie yogurt
3 oz. whole milk
Snack
1 jar peaches

Another Yummy Day!

We went to the park this afternoon. Here are a few pics.





Here's the pruneface himself

Connie went tubeless again today! He had a big bm and two small ones and more wet diapers than yesterday.
He's eaten:
1 jar of stage one prunes and 1/4 jar stage 2 pears & pineapples mixed with reddi whip cream
1/3 CUP Progresso Vegetable Beef Soup (pureed in blender)
sips of strawberry milk
3.5 oz of water
1.5 oz of half and half and 3 bites of chocolate pudding (not the sugar free kind!)
H20 at the park
1/3 CUP Progresso Chicken Noodle Soup with Carrots (pureed in blender)
1 oz. of half and half
1/6 CUP of fresh mashed banana with whole milk (in the blender) drizzled with hershey's chocolate syrup
20 cc's (almost an ounce) of half and half before bed

At dinner, he actually put his water cup down in favor of the cup of half and half. I bought some today at the store thinking I'd add it to some of his foods to add some calories, but I poured some in a cup for him to drink to see if he would. He loves it! He's definitely his mama's boy! I could drink that stuff by the gallon if it wouldn't show on my hips. Tomorrow he goes to Dr. Brady (GI doc) at 2pm. Say a prayer she lets us keep the tube out.

I got an email today that ProFlowers is donating $10 from every bouquet in the month of May to the Children's Heart Foundation. If you are sending flowers to anyone for Mother's Day or just because, you might check out this link. Finding better treatments for congenital heart defects would make a million moms happier.

Oral Intake Totals

Here's what he did today:
1 jar of apricot medley at 5:30 am.
1 stage one size jar of peaches and some bites of banana yogurt plus at least 4 oz. H20 at 11 am. At 2:30 pm, he took 1/2 jar of ham and apricots and some sips of peptamen. At 5:15, he ate about 1/4 jar of butternut squash mixed with turkey (rotten consistency) and at 7pm he at 3/4 jar of pears & pineapples. He threw up his early morning one b/c of that "morning cough" he has. But nothing since then! Yay! He drank more liquids today, but his wet diapers still aren't back. Keep praying that the doctor will see these improvements and agree to let us keep trying him without the tube.