Tuesday, September 28, 2010

September updates...

I have not wrote in a couple of weeks because I have been working on an entry about the weddings and how could I possibly write without mentioning the weddings, as they were two of the biggest things that happened this year for us. However, I can't quite get out what I want to say, so I figured I would update and when I am finished with my recap, I will post it. So stay tuned.

In life other than the weddings, things have seemed pretty hectic. I suppose they are just as hectic as usual, but with school starting and Nick and I both working and the amount of therapies kicked up a notch, its just nuts.

We went for our sleep study last week in Philly. Sleep is pretty much the last thing that anyone got, however, if you are interested, this is what a sleep study is like. Remember those really old, black and white movies, where they are preparing someone for a lobotomy with the tin cap that's connected to a bunch of wires? Well its similar looking to that. We arrived in Philly to CHOP and went up to the sleep lab. Sleep lab translates to hospital room that is audio and video wired with infrared so that in the pitch black they can watch us all night. Ever been paranoid about what you look like when you are sleeping? I now have. (Ever felt the need to clarify just who it was that passed gas because it wasn't you and you know they are listening??? Me too.) Anyway, they attached around 40 nodes to Owen, on his head, eyebrows, neck, chin, chest, and legs. They put the nose tubes in, they have the heart rate monitors on. They wrap his entire head and chin in gauze until he looks like a head trauma patient and then they say, go to sleep. Ha. Owen managed to sleep for 3 hours that night and Nick and I, maybe 2 hours. Once Owen realized that he was going to hemmed up like this for the long haul, he said "Game on." The game being, I am not going to sleep and neither are you. As you can imagine around 3-4am after being up most of the night and being severely frustrated, Nick and I actually tried to catch an attitude with each other in hushed tones and clenched teeth. We can laugh about it now. But miraculously, they swear they got 5 hours worth of sleep from Owen (Yeah, maybe in 10 minute incremets.) And we can be thrilled that its over and under our belt.

Yesterday we had our pediatrician appointment. Caleb weighs in at 16lbs 12oz and Owen at 11lbs and 7 oz. Owen is up 10 ounces. Still this is not enough. I am just so frustrated by this. I work on Owen eating constantly. This weekend, I got him to take a 6 ounce bottle. He loves eating cereal and fruits and veggies. His favs are bananas, sweet potatoes and turkey. He hates peas and chicken. I do this like its my job and it is. I (and Nick) feed both babies all day. I mean ALL DAY. So, to hear that we are headed for a feeding tube, is upsetting. I am sure for those of you who read this, whose children have feeding tubes, I am being dramatic. But I just do not want one more additional thing to add to my plate. So, in my protest, we are now seeing the nutritionist who is looking into special formulas and we are having a barium swallow test done. I will keep you updated on the results of all.

In other news, Gavin loves first grade and this week, I am going to meet the teacher night and I cannot wait to see his class and check everything out. I love that he is so close to home and that he is home by 3. It really does make a difference. He has time to wind down, play and then when I get home, we are ready for homework, dinner, shower and cartoons.

Caleb is also great. He is funny. He has a sense of humor already and he loves to smile. It lights up my day. He is a chubster and I love to pretend to eat his thighs and he giggles away. Owen giggles too. I love hearing it. And we are big into raspberries lately. Playing with either one of them usually means you are getting spit on.

This weekend we are going to take G to his first karate class and on Sunday we are going apple picking. I cannot wait to take pictures in the pumpkin patch!

Monday, September 13, 2010

A day of appointments...

Today we had a bunch of appointments. Its going to be this way for a while. I have Mondays off to deal with all of Owens things and today was a full day. First we had the cardiologist. We needed clearance for the real-time MRI because it requires general anesthesia. We had an EKG and a Echo and everything is great. His heart is pushed over a bit, but functionally, its fine. So we have our clearance. I have learned that nothing inside of Owen is exactly where yours or mine is, so it no longer bothers me to hear, but initially, when I would hear that his organs or bones were in a different place than they should be, it really bothered me.

We then had our ortho appointment and of course, his foot is trying to regress. She wants to start casting him again next week, but if we can stretch him (just for a minimum of an hour a day and three if we can swing it) then maybe we can keep the brace on. Ha. We stretch Owen, but an hour a day is quite hard and three is damn near impossible. I am wondering when I have an hour a day. Yeah, I got an hour a day, its just on the train on my way to work. I am not sure thats going to work. Needless to say, Nick and I will each find a half hour and get the hour in.

We had all our therapies today. At OT we got new elbow braces and a new knee brace for the leg thats been casted. We had a great therapy session and when we got home we had our EI therapy and our therapist stretched his foot for an hour.

At 6:30, the counselor or social worker came and it was my idea to have her, but we like her and I think she will help us with Gavin. Plus, I don't think it will hurt to have someone to chat with given the whole situation.

I spend so much time telling everyone how okay everything is and generally it is (see?) however, its also really really hard. Its not always okay. Its crazy sometimes and not just because of Owen, because we have twins, because we have three kids, because we have one disabled child, because its just really hard. Its hard for any family who has a baby or is adding a baby to their family. Its harder when its twins. Its even harder when one is disabled. Needless to say, I think the counselling aspect of things is a good idea.

In other news, Gavin started first grade and so far loves it. Tonight was our first night of homework and I remembered how much I hate kid homework. Why do they get homework so early in life? Is it for the parents? Last I checked, I completely understood the role of the letter "c", not only in my life, but in life in general. Anyway, the homework is done and tomorrow for the first time ever, Gavin will buy lunch. He is so excited about getting to choose chocolate milk over plain milk. Ah, the simple things.

Caleb is one minute away from crawling. I beg him daily to just stay immobile for a few more months, but he is trying his hardest not to listen. That child has the nerve to get on his hands and knees and rock forward and backward. And if that does not get him anywhere (and I promise it does) he uses his hands to pull and his knees and feet to push until he has made his way across a bed and now the floor. So, soon enough I will be baby-proofing, which to me means throwing out a bunch of crap so we can move all the valuable crap to where that was. Again, I beg him daily to hold off on this for obvious reasons.

And its Nicks birthday today! He is 32. Since it was such a crazy doctor day and he worked, we celebrated yesterday. I made fish tacos (his fav), mole chicken tacos and shredded beef tacos with all the fixins and then plum cake and mexican hot chocolate cupcakes from scratch. We had a few people over and drank a few beers and celebrated. It was a good time.


Okay, okay, enough already! Talk soon.

Wednesday, September 8, 2010

The first day of first grade...

I could not help but feel excited when Gavin woke up for school this morning. He was excited and almost different. Maybe bigger. He came down his loft bed in his new "night before the first day of school" pajamas and he seemed all grown up. He asked how long he had to wait before we left. An hour. He did not want to watch cartoons. He wanted to eat breakfast, wash up and play with his brothers. We had picked his clothes out last night and he was ready. He has his new bookbag packed and his lunch in order. We discussed grown up things, like whether he would need a water bottle so he wouldn't be thirsty all day and how many flash cards he had to practice when he got home today. Only 6 words today, which apparently is okay, because if it were "like twenty, I would be mad." Again, he seemed grown up.

We walked hand-in-hand to his school and he was assessing the playground from afar. Many days over the summer he asked me if he was allowed to play there yet. And for the first time, today I could say yes. We entered the building and now I had first day jitters, for its my first day too. My first day for my boy being in first grade. My first day of leaving him at a new school. My first day for leaving him in public school. I went to public schools all my life. They seemed normal. Not huge, not daunting, not anything but the norm. However, Gavin has attended Catholic school for the last two and half years. One pre-K class, one kindergarten, one of every grade. So this seemed huge to me. There were just so many kids.

We found our way to the playground which was crawling with kids of all ages and he wouldn't let me go. I think he wanted me to play on the jungle gym too. But eventually he left my side in favor of the rock climbing apparatus. He never took his eyes off of me. I searched the place for a familiar face and I could not find one. I felt myself tearing up. Its too big. There are so many kids. What if he doesn't make friends, what if he feels lost. I imagine, he will. When you are as cute as Gavin and you have been in a tiny school with one of each grade, there is not a day where the 6th, 7th and 8th grade girls are not fawning over you. Now there are 6 first grade classes, you are bigger and you have started loosing teeth. Needless to say, its going to be a little different.

Eventually, I noticed people were starting to wander to the four corners of the playground. Thankfully a woman walked up to me and said, "Uh-oh, you look lost." I laughed and asked where Ms. Nasti was (yes, that is her name) and was pointed in the right direction. Gavin and I both had sweaty palms (I'd like to say his was from nerves and mine was from holding his hand, but I would probably be lying) as I brought him to line up with his class. I looked around one more time and saw a neighbor and then another, and thought to myself, now we are part of our community. I kissed my baby boy, who is getting all grown up and walked out of the playground, hoping for him that the first day of first grade is an amazing one.