Tuesday, September 30, 2008

On the edge

We went to the carnival this weekend and Kyle was just in between the "little" rides and the big rides. He still kind of wanted to ride the cars and motorcycles, but new they were for little kids and he kind of wanted to ride the big ones, but was still a little afraid. He ended up riding both, but only because I told him that Grant really needed him to ride the little rides with him. I can't believe how much he has grown up since just last year. He had to get a chicken pox booster shot last week and he didn't even cry. We still had to make our post doctor trip Target for a snack and some retail therapy, but last year, I had to carry him into the office, carry him back to the room and sit on him while he got shots. At least the flu vaccine is available as nasal spray which is a huge relief since this is the first year he has gotten it and will need a second dose in a month. I took Grant for just the flu vaccine after Kyle's appointment and he said "Oh, tank you for getting me my medicine mom". He is still in the habit of "tanking" us for the most mundane things (picking him up from preschool, dropping dad of to get his rental car, etc). He is also enjoying his new task of waking Kyle up in the morning. He always runs full speed to find me after he wakes up and asks to go wake him up and then says "Kyle Josephina, get out of that bed". Kyle is of course less then thrilled with the new arrangement.

Wednesday, September 24, 2008

Anniversaries

Jason and I celebrated our 8th anniversary yesterday. Actually, celebrated is probably not the correct word, maybe noted or observed would be more appropriate. He had been out of town at the Rolla career fair and got back late, just as I had got the boys into bed. He walked in with a water bottle that had been a freebie at one of the other booths and said "Happy Anniversary". He was kidding of course, he had actually gotten me a necklace with a stone for each boy. I had wanted it for awhile and had seen the charge when I balanced the check book, so it wasn't a huge surprise, but it is nice to finally have it. Kyle would have spoiled the surprise anyways. He made me a bracelet and as he gave it to me said "this is from me and the necklace from Dad is from me to". When I asked what necklace he got really frustrated and said " well, I'm not going to tell you which one, so just try to act surprised, ok?". It was really cute, Jason had showed it to him when he got it and one morning I was getting ready and he handed me the necklace I usually wear and I said "what I really want is a necklace with a 3 stones, one for each of my boys". When I looked in the mirror, he was smiling from ear to ear looking at the ground and then ran out of the room. He is usually so focused on his own things that it was nice to see him excited about someone else receiving. In other Kyle news, he is now insisting on wearing his old Nike's to school as opposed to his new tennis shoes, which are New Balance because "he just wants to". I can't believe his in in kindergarten and already has a brand preference. I'm just glad I don't have any girls to worry about clothing. We also just finished reading our first chapter book. I read a chapter each night from Star Wars, Clone Wars and while it's not a classic, it beat reading the same short book night after night, as he usually gets into a rut with his story selection. I am trying to think of another that would be good to start.

In addition to us, my grandparents are getting ready to celebrate their 60th wedding anniversary. They are having a card shower, so I made a card from each of the boys on Shapfish. Attached is the picture I used for Ryan, who I am afraid is coming down with his first cold. I am doing pretty well about not panicking and he seems to be breathing well despite the small bit of congestion, but I am keeping my fingers crossed and trying to give him lots of rest by not going anywhere, which makes us all a little stir crazy. Everyone says how quickly the kids grow up, and I know that, but day after day in the house with the 3 of them doesn't exactly make it seem like the time is flying by. We are going to try to go to lunch or dinner this weekend, if we can coordinate a time between soccer, birthday parties and nursing Ryan.

Sunday, September 21, 2008

There is no potty

As I posted previously, the toilet in the boys bathroom was leaking and after multiple attempts to fix, Jason opted to just replace it. So he brought home the new version and took out the old one only to discover he was missing some bolts leaving us with no potty for Saturday. I didn't think much about it until Grant came to find me Saturday afternoon with wet pants saying sadly "Look what I did". When I asked why he hadn't put his tinkle in the potty, he said, "There is NO POTTY". Couldn't really argue with that. He was excited to "help" dad install the new version and like usual was very appreciative saying "Oh, thank you for my new potty". He can be very polite at times, for his birthday, every unwrapped present brought an "oh my goooosh" and an "oh, thank you for getting me this new puzzle/tractor/ball". The picture is of him and my niece. He thinks the world of her and has always called her "Sugar" after he heard me saying "Hey, Sugar, how are you this morning". He now repeats this phrase every time he sees her. Similarly, he calls Ryan "Sweet Heart" which is strangely appropriate for our "heart" kid.

Other then installing toilets and aerating the yard, we did manage to go out to dinner at Jason's Deli last night. It was our first dinner out as a family of 5 and I was so relieved that everything went well. No meltdowns and everyone liked their food. Just one head butting incident when Kyle tried to eat the rest of Grant's dinner so they could get to the ice cream quicker, but that was relatively minor (Grant has replaced biting Kyle out of frustration with this new head butting and we aren't really sure, but think it is the lesser of two evils since he is not very effective at the delivery as we work towards using words). I am glad everything went well, because I was really needing a break, it had been a hard day dealing with all 3 while Jason was busy working on house stuff. Today is more soccer and a birthday party, so we will probably split up letting Jason and Ryan stay here while the Grant tags along with Kyle and I.

Tuesday, September 16, 2008

Back to Normal






It's been awhile since my last post. Ryan is doing incredibly well now, but for awhile there wasn't much to post and I had started getting a little leery about documenting any progress because it seemed to always be one step forward, two steps back. He was home and on oxygen for July and most of August and we didn't really stray far. We had portable O2 tanks, but thankfully by the time I got comfortable using them, he no longer needed it. Although part of his diaphragm is still not working, he has learned to pull air into his lungs using the muscles between his ribs and in his neck.

He recently had a followup with his cardiologist, Dr. Drake, and he is so pleased with his progress. He had an echo (basically a fancy ultrasound of the heart) which showed that his heart is working very well, just some mild narrowing of one branch of the pulmonary artery which is really inevitable with a repaired TGA. His EKG showed a very normal rhythm and we have been fortunate that he has never really had any problems of that type. There was a little girl at childrens that had the same surgery the day after Ryan, but instead of an ASD, she had multiple VSDs which I think lead to more problems with the hearts electric system and how it beats. I am still worried about his diaphragm and what the long term impacts will be if it doesn't heal. I haven't really talked to the cardiologist or anyone about what it means long term, but plan to ask at his next followup in October. It could still heal and I realize we are very lucky to be where we are. Dr. Drake did say that it was keeping his sats in the low 90's instead of the high 90's because his lungs are a little "wetter" then normal and he kept him on a medicine called Lasix to help with that. He said the lower sats are not a problem and I trust him, but it is still unsettling for some reason. I think about him being able to run and keep up with his brothers and do the things they do and I worry about his getting sick this winter. Again, I realize things could be much worse and we are so happy with his progress and where he is now.




Probably the best news is that he is gaining weight well and I have been able to switch from pumping and feeding him fortified milk to nursing him which is about 100 times easier, especially at night. I am still amazed that he is nursing after everything he went through and I am very thankful to the lactation nurses at Children's that gave me so much encouragement when I wanted to quit pumping so many times. I am terrified of him getting sick with one brother starting kindergarten and another starting preschool and any extra immunity he can get is worth it. Because I pumped so much to establish my supply, I have a ton of frozen milk that I don't think he will ever drink. So I have been looking into donating it to a milk bank where it could be pasteurized and used for other babies who need it. They have a screening process that includes a blood test, but they pay for everything including shipping so I think it would be worth it. I just can't stand the thought of throwing it away after spending so much time collecting it, but I also really miss the space in my freezer.

Ryan is really a normal baby at this point. He has already rolled over a couple of times, which is amazing given that he have very little tummy time for the first 2 months of his life. He smiles all of the time and loves to watch his brothers. He "coos" alot and loves being sang to. He is almost sleeping through the night, I try to feed him around 10 and he almost always sleeps until 4.

Speaking of his brothers, they are both doing well. Kyle turned 6 and started kindergarten. He had a birthday party at the bowling alley which was lots of fun and he really likes school. He was heartbreakingly stoic on the first day, getting on the bus and finding his classroom all by himself. The plan was that he would ride the bus and I would meet him at school to make sure he found the right place, but he is one of the last stops and by the time I got to the van, drove and parked, his bus was leaving empty, so I went to his class and found him sitting with a friend from t-ball and two other boys. I took a couple of pictures and went to tell him goodbye and he was like "Ok Mom, get out of here". Other then school is playing soccer again which he loves. He had his first game and scored 2 goals which is good, because he is not much fun to be around when things don't go well. I hope that gets better this year because sometimes last year he would get frustrated if things didn't go his way and that just made things worse. He is lucky to have good coaches as opposed to last season when as he put it "They didn't have a real coach, so my mom said she would be the coach".

Grant turned 3 and started preschool and most importantly is now potty trained after what was undoubtedly one of the longest and most frustrating weekends of my life. We went straight to underwear and went through about 20 pairs a day, having basically no success for three days. I finally gave up on Monday and put him back into a diaper at which point he said "Mom, the tinkle is coming, let's run to the bathroom". I guess he had to prove he could hold out longer them me. I don't want to jinx it, but he has done really well since then. We are now working on aim so the bathroom doesn't always smell like a latrine. We actually need a new toilet in the bathroom they use and I joked that with 3 boys we should just install a urinal and be done with it. Being potty trained just in the nick of time to start preschool was good, because he really, really liked it the first two day he went. He just looked so proud to be a big kid. He is now repeating over and over the steps to write a U and Kyle is like "Ok Grant, we've got it".

As for Jason and I we are about the same. I am hoping to start working again soon. I am actually "practicing" working right now since with Kyle's half day kindergarten and Grant in preschool it works out best for my Mom just to stay here in the morning, so I will need to be disciplined enough to stay in my office during that time. It hasn't been bad so far, Ryan is a pretty good napper which makes things go pretty smooth most of the time. The best thing is that instead of taking time out to pump, I can just take time out to feed him. Jason is still working alot and just completed (with lots of help from his dad) some major repairs on the front of the house where two leaking windows caused some major damage. Oh the joys of home ownership. Our next fun things to spend money on are a new toilet an radon mitigation system for the basement. I feel lucky that Jason is so good at fixing things like that and that we also have his dad around to help.

Thanks to all who have asked about and prayed for Ryan. I am going to try to start posting updates more frequently (and less lengthy). I have always wanted to keep a record of the funny things my kids say and do as they grow up but have never been able to keep it going. A few a my friends say that for some reason, using a blog makes it easier so we will see.