Cruisin

Well Evan is certainly feeling much better. For about two weeks prior to having his G-tube switched to a Mickey button, Evan had decided he wasn't going to go forward in his walker anymore and was only going backwards, now he's a mad man all over the house. He goes forwards and backwards and turns. He has driven up to his present sitting in the living room and pulled it over and pulled the ribbon off. A couple of nights ago Stephan and I were in Evan's room pulling out his size 6months clothes that he's out grown when we heard giggling and wheels in the hall way. Evan was SO excited to be running down the hallway towards us and was quite pleased with himself when he got into his room. If he can't get somewhere on the first try he will back up and try to turn when he goes forward, so fun to watch, but I think we're going to have our hands full when he's walking on his own! Most of the time when he's going some where it's with both feet at the same time when he's going forward, but sometimes he takes steps, in reverse it's more one foot at a time. I'm posting some pictures of him in our room with his walker checking out the handles on daddy's dresser, and a video of him coming to me when I call him in the hall way. I can't tell you how fun it was to watch him go giggling on by in the hall while I was taking a bath, he stopped long enough to give me a big smile, then on he went (Stephan supervising him of course).
Stephan and I feel kinda bad that we had no idea how much the other tube was really bothering him, nice to see him feeling better, and more mobile.

Evan has been sitting pretty sturdy since he turned 7 months old gestationally and has been getting tub baths or sitting in the sink on his own. Now he can sit as long as you'd want with out him tipping, up to at least 1/2 hour that I know of. Here are some pics of him sitting, and I'm including the one with him in the bath so you all can see a picture of his new Mickey button.

He has however gone backwards significantly on tummy time, I'm confident this is because of the pain the old G-tube was causing him. He had gotten to the point that he would just lay his head down and cry during tummy time. He's still not rolling over for us again, but is pushing up with his arms more, and can hold himself on his hands and knees (I have to put him in this position) for short periods of time (like 5-10seconds), I'm happy to see a start to an improvement, kinda feel bad for torturing him when his stomach hurt by still putting him on his tummy and trying to get him to do stuff.

Birth to 3 (the people from the school system who come to our house to evaluate Evan, includes an OT (occupational therapist), PT (physical therapist), and early childhood special educationist) was at our house today. Evan will be 8 months old gestationally on January 26th (because he was due May 26th). They were very impressed with how he was doing, and the OT said she would be surprised if he came back as anything but normal developmentally at his follow up clinic appointment on January 27th with the exception of his tummy time skills, and eating issues. That was really nice to hear. The OT is planning on coming out to our house 2-3 times a week for awhile to try to help us to get Evan to eat more by mouth. She said she could definitely see some behavioral issues, and to try to keep our chins up because although they can be VERY frustrating now, having some of the qualities that are making his eating difficult now (like his stubbornness) might serve him very well in adult hood. Evan pretty much takes just sips a day out of a sippy cup or bottle now. He's more comfortable with the bottle, holds it in his mouth and bites on it, but we're pretty sure he has no idea anymore that that's what makes him full. With solids, some days are real good some are real bad. After we offered him green beans he wouldn't take anything for a week, he just clamped his mouth shut and shook his head no.

My dad was up to visit this past weekend for Christmas, we had a good meal, set up the Christmas tree together (yes we know it's January, but our Christmas celebrations aren't done yet) and some conversation, otherwise kept it pretty mellow.

My dear husband went ice fishing on Sunday with my brothers, and caught a lowly perch. None the less he really enjoyed getting out, and had a good time, right up until the moment he hit the deer on the way home. He was in a residential area in traffic (so only going 25mph) and it jumped out from behind a parked van that was on the road. After Stephan hit it two other cars also hit it, needless to say the deer is dead, and no we didn't get the meat. Stephan is fine, the jeep is not. It will need several parts changed, I can't remember all of them Stephan could tell you, I know the bumper is one of them. Stephan was quite distraught, but I think he's feeling better now. I'm feeling like, eh, come what may : )

We are looking forward to celebrating Christmas with Stephan's family this weekend! The whole gang will be here, and we're excited!

As for me I continue to feel great, no pain at all now, still more energy, pretty excited about that!

Tummies

Well we've been keeping life interesting here at the Gorny household the past week or so! Last week Wednesday I had a surprise surgery to remove my infected appendix. I remember feeling really tired and run down since about Christmas time, and no matter what I did couldn't seem to get enough sleep. I attributed this to work, holidays, and still getting up in the middle of the night to pump. Then about 3 days before surgery I had a backache on my right side, took some ibuprofen, and tossed it up to busy day at work. The next day I started feeling quite bloated, figured I was constipated (see I have an explanation for everything), the next day the bloating continued and was joined by an ache when I pressed in my mid right abd. The ache progressed that evening gradually getting worse till I couldn't sleep through it at about 1 AM. The pain seemed to have settled in my right mid and lower abd, but I figured it was gas pains. Things like position changes aggravated the pain. I kinda thought maybe it was my appendix, but figured I wasn't having nearly as much pain as the patients I see come in with appendicitis, so couldn't be right? Well called one of my friendly coworkers for a second opinion, and they advised I come in to get checked, grumbling along the way I went in, and sure as shoot my appendix was inflamed on the CT scan. So out it came. All went well. The appendix was what's called retro cecal, basically instead of being up front like it is on most people it was along my back side (hence the back pain) it was 6 inches long and hard from what my surgeon tells me. He sent it to pathology to make sure there wasn't something wrong with it like a tumor, because it was so hard, that was all clear as well, just appendicitis. Bless my surgeon because my appendix was tucked back it was difficult to remove and he said he had to move a lot of things to get to it, but he was patient and got it out laproscopically, which I'm SO thankful for. This means only 3 weeks off of work instead of 6-8. I'm feeling great, no pain as of today, unless I sneeze, and the pain isn't in my incisions, it's where the appendix was chopped off. My energy is MUCH better, so thankful for that as well.

We thought Evan was getting a tooth since about Christmas time, he was just being more fussy and not sleeping as well at night and seemed to be chewing on more stuff. Well we felt pretty bad when we found out his G-tube was pinching him. He's put on 4lbs (up to 17lbs 80z now) since it was placed and the space between his stomach and outer abdomen had gotten bigger, and the tube was digging into him. He had pretty much all but stopped eating entirely, and we didn't figure it out till the day before my surgery. So the same day as my surgery Stephan was bringing Evan to see his pediatrician and a surgeon to try to get the tube adjusted while trying to see me post-0p. The surgeon expanded the tube and cauterized off the piece of tissue that the tube had cut and made bleed. The next morning Evan took 1/2 a big jar of bananas and 1oz of milk out of the bottle. Poor kiddo's stuck with newbie parents that take a bit to figure stuff out sometimes.

Evan had a procedure done at Minneapolis Children's today to exchange the tube you can see in the picture of him grabbing his feet for something called a mickey button. Basically the tube he had was held in place by a foam disc in his stomach, in order to remove it they had to go down with a scope and snip the tube and then pull the disc piece out through his mouth so they could then place the new tube. In order to do this he had to be under anesthesia again which he tolerated very well. He went in for the procedure at 11:00 and was back in our arms at 12:20, and we were on our way out of the hospital at 1:20PM. This new tube is hopefully going to be much nicer than the old one. The old one had right angles on it that would pinch his belly and cut his skin. This tube has a balloon filled with water that holds it in his belly, and very nice rounded edges. It also doesn't have a tube hanging on Evan all of the time. Instead it has a port where you can plug the tube in when you need it and remove it when you don't. Evan already seems to be some more comfortable with this new tube. He will not have to have anymore procedures to replace the tubes either. To exchange this one the balloon is deflated you just pull it out and put in a new one and fill up the balloon. Evan hasn't really done much on his tummy since the last tube was placed so we're hoping this one will be more comfortable and he'll be more into it again. We visited with our good friend colleen afterwards in the cities and enjoyed a meal together. Was nice to see her, and to be able to take a break before hitting the road again, and avoided rush hour traffic as a perk.

Pictures

first a family picture taken of us when we were at my mom's for Christmas

Next a picture of Evan's grandma and grandpa Gorny reading him a book on their recent visit at the end of December.

And Evan is getting a tooth after all, we can feel the sharp little bugger poking through his lower right front, and see it a bit. He really enjoys frozen strawberries now out of this feeder sack thing (not sure what they're called), I think it feels good on his tooth, and tastes ooh so good!

A BA BA BA

So Evan has been making some new noises occasionally for the past few weeks, including ma, ba, and experimenting with high/low, loud and soft. Tonight he was really into saying Ba, and when I would say it a few times he's get into it and repeated it after me. When he saw I was excited about it he started doing it to get me to look at him while I was pumping and watching TV. It was SO cute I just had to get a video for you all to see. The first video is pretty dark, but turn up your sound and you can still hear us.

And Evan has been having fun with the mirror for awhile now, just hadn't taken a video so thought I'd do that at the same time.

evan has also been very into banging on things to hear the different noises they make so i thought i'd be nice and let him finish this email.

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