Oficially Walking!!

OK, so Ethan didn't just start walking today. He actually started trying it out a couple of weeks ago but it seems that he has now gotten a hold of it and tries to walk everywhere. He is still in that tipsy stage where you hope he doesn't fall and break something. But he is definitely proud of himself and can walk the length of any room and even on our squishy bed.

I wish his developmental testing had been this week instead of 2 weeks ago because I know he would have scored a lot higher. He was right on target for his cognitive development (which I thought he would be lower because he only says one word) and he was at an 11 month old level for his motor skills (he was 13.5 months old at testing). I was really surprised because I would have placed him higher on his motor skills and lower on his cognitive. I know that his comprehension is good, but I do worry about his speech being delayed. She reassured me that this is normal after having major surgery so soon after birth and then subsequent surgeries. Also, she said he scored lower on his motor skills because he had only been walking for a few days at that point and could not get to a standing position without having to pull up on something. So anyway, now his is walking like a mad man and can stand up wherever and whenever he wants. At times he even tries to run away from you, but he soon falls flat on his face.

I've been meaning to get some video of him walking now that he has met another milestone. So in the next few days I will try and get this done. I hope this weekend finds you all well. Love you all!

---Allison

Saturday, June 21, 2008

This last week has been really busy. I've had appointments of various sorts everyday this week. We've been up to PCMC twice to check Ethan's labs, blood pressures, and adjust his medication doses. His cardiologist feels that the dose of enalapril he is on now is a good maintenance dose. However, he does want us to come back in a month for a clinic visit and to have a quick ultrasound to re-check his heart function. He had originally told us that we would do this in 6 months, so I am unsure as to why he changed his mind. I am hoping that it is only to see if the medication is helping and not because he is overly concerned. I am okay with it. I would rather have them check it more often than risk missing something. Ethan still continues to have problems with vomiting. In fact, it seems that I can't keep up on my regular laundry because the machines are always full of bed sheets, blankets, towels, or soiled clothing. But as long as they don't think it is happening because of his heart, we will just keep doing what we have been and hope that he grows out of it soon. Thanks to all of you who keep up on us (especially since I haven't been as good about writing as frequently). You really don't know what it means to feel like people care and support you. Thank you.

----Allison

Echo Results

So yesterday and today have been spent at PCMC for Ethan's end of study visit for the enalapril study he was in. Yesterday was the echo. The cardiologist does not think that the vomiting is related to his heart. However, the only thing he could say about his heart function is that it is "OK". I've pressed him a couple of times as to what that really means. He basically said that some doctors might say it didn't look very good and that others would agree with him that it is "OK". He said that it didn't look "bad" but he wished it looked better. I have to admit that I was a little bummed about the results. Ethan has been doing really well lately and so I guess I was hoping for at least a "good" echo. But I guess "OK" is better than "bad". He said that we will probably do another echo in about 6 months to see how he is doing.

Ethan also had his developmental testing today and we should be contacted either later today or early next week with those results. I don't think there should be any surprises with those results. I think he is fairly average in most things.

So now that Ethan is no longer in the study, the cardiologist wants to put him on enalapril for real (he may have already been on it but we won't know until the study is over in a couple of months). So we will start this in the morning and check his pressures at our pediatrician's office. Then we have to take him back to PCMC next week for anthother blood pressure check and possible dose adjustment and lab work.

So to summarize the last couple of days I would say that they have been "OK". Hopefully with these medication adjustments we can get some better news next time around.

---Allison

Wednesday, June 4, 2008

I don't know what my problem has been lately. I don't think I've ever gone this long without a blog update before. I guess no news is good news, right?

In my defense, we've been very busy. My sister, Angela got married last Wednesday. She of course looked beautiful and it was a fun night. Also, this last Saturday, we started putting in our yard. I had worked the night before and got to sleep around 6:30 that morning. I was able to sleep till about noon. However, I started feeling guilty and so I got up to help Tim, my dad, and my uncle Brent out in the yard. As soon as I got out there we began rolling out the grass. It lasted pretty much all day long. We did get some help from a few of my brothers and a couple of neighbors which definitely helped. I didn't realize how physically exhausting putting in a yard was. I honestly could hardly move that night, but, it was SO worth it. I can't wait until it's done and the kids and I can finally go out and play in our yard.

This week was supposed to be the developmental testing and sedated echo for Ethan. However, they called me Monday night and told me that it had to be changed until next Thursday and Friday. I was really hoping to get it done sooner, but I guess there is not much I can do about it.

Ethan is still vomiting. He does it at least once or twice a day. His energy level is still really good which keeps me from panicking too much. In fact, today I was making lunch for Gavin and Ethan was sitting on my be watching T.V.. I don't worry about him falling off because he is scared of the edge. However, when I went to go and check on him, he was no longer on the bed or even in the room for that matter. He had climbed off of my bed onto the bench at the foot of the bed and then onto the floor. He then crawled down the hall and climbed up 6 stairs into the bonus room where he was just playing with his toys like a big boy. As soon as he saw me, he started bouncing up and down with a great big smile. You could tell he was SO proud of himself. And although this means my luxury of keeping him in one spot is over, I am proud of him too.

---Allison