Snow Day!

Well, we are getting some considerable snow for the first time this winter. I'm still undecided about Connie getting to experience it. For one, his temp runs pretty cold anyway (not usually any higher than 95 or 96 degrees) and I'm afraid he'd get too cold out there. The other is that we don't have proper snow apparel for him and I don't want him wet. If we get brave enough, we may dress them all and get him out there with the girls just long enough for a pic. Honestly, the thought of staying in our pajamas and watching movies and playing downstairs sounds much better to Mom! We do have to venture out at some point today. Greg went to the grocery store last night late (along with the rest of the town!) but I forgot to pick up two prescriptions for Connie before Walgreens closed. They say there's supposed to be a break in the snow later today so we'll try then. Have fun and be safe!

Swallow Study Results

Well, Dr. Brady hasn't reviewed the results yet, but Renee, the speech path, went over the test with me after it was over. I'll get to that in a second. First I'll tell you what happened. We got there with our little "bag of tricks" and sat him in a chair up high off the floor. The x-ray table was flipped upright and was on his right and on his left was the x-ray machine. Renee handed me various things to try to get him to eat/drink. We started with a sippy cup which he readily opened wide for (to my surprise). He allowed it in his mouth and seemed happy about it until I squeezed a little bit of barium mixed with apple juice in his mouth. You should have seen the face! We tried giving him the barium mixed in all sorts of things including purees and milk. We tried it with a spoon, syringe, cup, etc. He preferred the syringe, but only tolerated it a couple of times. We were able to get seven good swallows, enough for the test! I was so proud that we were even able to do it. I thought he'd be tight lipped the whole time and not take anything. He didn't cough and gag and go crazy either. It was so good. 45 minutes was his max and we decided we got enough at that point. It only took three people and 45 minutes for 7 swallows, but it was worth it! The test showed that he is NOT aspirating (swallowing the food/liquid into his airway). Based on this, it is safe for him to eat. We are allowed to advance with feeding and drinking during therapy and when we work with him at home. What it doesn't tell us is why he doesn't want to eat or swallow. We don't know if it is a behavioral, learned thing, if it is related to reflux (she mentioned secondary aspiration as a possiblility) or what it could be. We've ruled out aspirating though so hopefully once Dr. Brady gets the info she will get with us on the next step, whether it be more studies or what. Basically, it was the best news we could hope for. If he was aspirating, I don't know what we would have done, but I know what we couldn't do and that is try to put food/drink in his mouth! My mom said tonight that she just had this funny feeling that came over her that today was the beginning of healing for him (as far as the vomiting goes). Boy, I hope she's right!

Conway Can. . .

I got to thinking tonight about how easy it is to focus on all that is wrong with Connie, what Connie can't do, doesn't do yet but should, won't do or shouldn't do. So that got me thinking about what all he can do. Here are just a few things that come to mind:

Smile, laugh, melt your heart by cocking his head to the side and rolling his eyes up at you, splash his sister in the bathtub, drop his cookie on purpose to watch mom and dad repeatedly pick it back up for him, find the trunk (by himself) on his "blue bunny elephant" lovey and chew on it until he falls to sleep on his own, find a way to roll completely off the blanket he was laying on before throwing up, show his affection for toys, pets and people by banging on them, chew on his toes, chew on his upper lip making this cute, underbite look on his face, become completely enamored by music on the Today Show's Concert Series, grab your nose/face/beard/glasses with gusto, mimic a fake laugh, wait patiently for feeding/changing/cleaning while Mommy takes MK to the bathroom all day long for potty training, make getting up in the middle of the night to clean up puke a rewarding experience, reach for us when he wants to be held, rub the top of his head, cover his face with cloth diapers and blankets when sleeping (just like Daddy), get excited when he sees Sissy or when visitors/therapists come over, reach out to try to pet the dog, knock ornaments off the tree with his feet, talk/sing himself to sleep, mimic facial movements while watching us eat (just as a cruel joke--he's leading us on!), recognize extended family members, poke you in the eye with his thumb and show no remorse, calm down (some call it "recover quickly") after getting upset or sick, watch you when you aren't looking, intensely study the tag on a blanket, doesn't get scared when you place a dancing, singing FrankenPig on his chest, help put his arms through the sleeve of a shirt now, bite your finger hard enough until you scream in pain, bang on the back of his other hand when he gets bored and can't reach a toy, kick the wipes container off the changing table, give cues as to when he's going to be sick so that we can prepare, thus having an easier clean-up. . .

Well, that's a start at least. Greg and I hope that this list helps you to see a little glimpse into his personality and how much joy he has brought to our home and family.

It's been a while. . .

I thought I posted an update last night but I may have forgotten to "publish post". Basically I was just writing to tell everyone that even though Friday and Saturday had considerable vomiting, both Sunday and today he only threw up about 1/2 of his first feed of the day and kept everything else the rest of the day and overnight down. I hesitate to post this wonderful news because as Murphy's Law would have it, every time I do, within minutes he pukes up his tube and all! Knock on some wood tonight that he'll stay asleep and that this trend of proving me wrong will end.

Speaking of sleep, he's developing some bad habits. He's going down around 7 or so and then waking up at 9 or 10pm and wanting to be up for an hour or so. Then he sleeps in so late in the morning. This needs to stop because Mommy needs her time in the evenings and because he has PT early on Friday mornings so he can't sleep in! Today he slept until 9:30! He ended up only taking one nap but it was about 4 hours long. Weird. Just when you get them figured out they change! I've been letting him sleep instead of feeding him his first feed at 7 while he's asleep. It wakes him up since it makes him vomit. I figured he's been doing better (less vomiting) if he's up for a few minutes and can get some good coughs before the feed starts. He seems to only throw up the first half as opposed to the whole thing if I feed him before/just when he wakes. Then only problem with waiting till he's up is that it's hard to get in 4 feeds before having to turn the pump on continuous at 10pm. I want him to get enough ML's throughout the day and to do so he needs to get that first feed early enough. Today I let him sleep but spaced the feeds every three to three and a half hours and I was able to get in four feeds and still give him a break for an hour before turning it on for the night. I'm sure this makes little sense and I apologize for boring you, but it's related to Connie so there you go. This website is all things Connie afterall!

There are a couple of new pics on the right side of the page. Enjoy!