Tuesday, June 29, 2010

Catching Up Post

I've slacked on posting about a few things. Mostly because I hadn't uploaded any pictures onto the computer for a while. Actually haven't taken many pictures at all lately. Not really sure why. Just haven't. Probably just utter laziness kicking in.

Anyway, I can't remember if I mentioned before (and again with the lazy trend, I don't feel like looking) that we got the kids one of the butterfly kits where caterpillars arrive in the mail and you get to watch them grow and make cocoons and hatch into butterflies. The kids really loved it. They would often check on the caterpillars to see how much they had grown and were excited when they finally made their cocoons. They were even more excited when they hatched. Lys, Dylan and I got to watch one of them emerge from its cocoon. That was kind of fun. Although I will say that butterflies are kind of gross when they first come out with their drippings of red meconium. And kind of stinky. A few days after they hatched, the kids decided to try to release them. I got a video of it, but will spare you from listening to Dylan cry and Jimmy boss his sisters. The butterflies didn't seem ready to be released then. They didn't try to fly at all and basically fluttered to the ground when Russ gently tossed any into the air to see if they would fly. So back into the netting thing they went for a few more days. They flew away nicely when they tried again. Well, one seemed happy to sick around and let the kids hold it for a bit. Unfortunately I didn't have the camera with me that time.

Here are a couple of pictures just before the first attempt to release them. One with the kids getting ready. The other just of Dylan to show that he was actually there and part of it.

This next picture is of Lys with her preschool teacher at preschool graduation. Again I have a few videos of songs and things from her graduation but will spare you having to listen to them. My camera was very low on batteries so I didn't actually record all I wanted. Wished I had recorded them singing Tony Chestnuts. They sang a lot more to it than I know and it was cute. Lys loved preschool and was excited about her graduation program. Didn't seem all that sad about not having preschool anymore. She just knows she gets to start kindergarten in the fall and is excited about that.
Yesterday I cut Dylan's and Emma's hair. Dylan's because, well, it needed it. It was getting a bit long and even though it was cute on him we decided to try giving him a really short cut. Not the easiest thing in the world to do to a kid who wiggles because he's not happy about getting a hair cut. I just think his hair is kind of funny. Has a couple of spots where his hair is more blond than other parts so it makes it look like he has bald spots. Granted, Russ did decide he needed it a little shorter on the sides and around the ears and did make a couple of little bald spots in his attempt to trim it.

Emma asked me to cut her hair for her. Ended up being slightly shorter than I intended because she moved as I was cutting some and had to fix it after that. She likes it though. Likes having it shorter for the heat of the summer.

This is a picture of Emma and Dylan together shortly after their hair cuts. Not the best picture but it gives you a general idea. Jimmy says Dylan says he has "Jimmy hair." The girls say he has "Daddy hair." Emma says she and Molly have the same hair now.

If you notice, I don't have any pictures from Lyssa's birthday party. When I finally got the pictures onto the computer I discovered that the only picture we have is a short video of the blowing out of the candle. She had a good time with her party though. Even if Dylan thinks the presents she got are all his.

Thursday, June 17, 2010

MRI Results

Dylan's doctor called me a few minutes ago to go over the results of yesterday's MRI. He said that everything looks good and there wasn't the narrowing in his pulmonary arteries. Which means that he won't need the cath. Which is very good news.

He also talked about when he needs to come in next. The last few visits have been every 6 months. He decided to go 9 months this time. I didn't think we'd see going every 9 months for a while yet. So all in all it was a good phone call.

Wednesday, June 16, 2010

Dylan's MRI

I was surprised last week to get a call from Primary's to schedule the MRI for Dylan. Didn't expect it to happen that quickly. Nor did I expect to be able to get in this week. Although I will say it's nice to have it done.

I took Dylan in this morning for the MRI. Obviously it was sedated. And even then he fought them a little with it. They give a stronger medicine for sedation for the MRI than they do for an echo since it's more important that the person not really move during it. The nurse told me that they wanted him to sleep for 2 hours with the medicine. Said that those who don't sleep for the 2 hours tend to wake up rather cranky and it's just all around better for them to sleep for the 2 hours. Anyway, after giving Dylan the medicine, it appeared that he was quite out so they took him into the MRI room and started getting the monitors on him and getting everything set to go. They have a little camera inside the machine so they can watch the patient. I looked at the monitor and noticed that Dylan's head wasn't where it had been so glanced through the window into the room. He was moving around and fighting them. They gave him a little bit of a different kind of sedation medicine just to help him "get over the hump" to fall asleep.

Once they got him settled back down and got the monitors hooked up and everything ready to go, they had me go wait in the MRI recovery room. I was glad that I brought a book at that point.

About an hour later they brought Dylan in and laid him on a bed. He really tried to wake up then and started moving around and kind of fighting them. I ended up holding him and he would settle down and sleep for a couple of minutes then start shifting around again for a bit before settling down. The nurse finally asked if he would like a drink. He heard her say "sippy cup" and without even opening his eyes said, "Okay." A little bit later when it was obvious he was keeping it down the nurse asked if we wanted to go home. Again he immediately said, "Okay." Although I think he said "Bye" the loudest.

Not long after getting in the car, Dylan fell back to sleep. And stayed asleep for quite a while. Woke up pretty happy but pretty wobbly. Couldn't really even stand without tipping for a while. Even going to bed tonight he was still slightly wobbly but was a lot better than he had been.

I don't have the results yet for the MRI. Dylan's cardiologist wasn't at Primary's today. He was at a new outpatient clinic Primary's has at the south end of the valley but he should be calling me. I'm hoping to hear tomorrow. Waiting for the results of the MRI isn't fun. Waiting the week for the results of the echo didn't bother me at all. I guess that's because I figured it would show what it did. This time I'm waiting to find out if he will need a cath procedure. I'm hoping he won't but a lot of me expects that he will. Which is probably what is making the wait a little more anxious. Which is funny in a way since earlier today I was thinking how quickly going to the doctor for his heart becomes just a part of life.

Friday, June 4, 2010

Dylan Echo and Cardiologist Visits

About Wednesday of last week I received an apologetic call from Primary's saying that they would not have any sedation techs there the day he was scheduled for his next sedated echo (that date was today) and they had one time open that Friday at 8 a.m. that they were saving for him if we could take it. I asked them when the next available time they had open after his original scheduled one. They checked the schedule that would work to also meet with his pediatric cardiologist and the soonest they could get him in if I didn't take the one open time wasn't until September. So knowing it would be challenging for us, I opted to take the time they suggested.

Mostly it was challenging because Russ had training stuff at work he couldn't miss and the kids had a big program followed by their annual picnic on the playground and flower planting at the school. But it got worked out with Russ just going in a little late to work to help get the kids off to school and my mom came up to get Molly over when she was supposed to go and watch Lys.

With the appointment at 8 and knowing I wouldn't be meeting with his PC until today, I figured I should be back in time to see the program. Unfortunately, the sedation left Dylan a little nauseated and he threw up a couple of times. They wanted to make sure he was okay before they let us go home. After the second time he threw up, they got him some anti-nausea medicine. After waiting some time to make sure that actually helped with his hurlings, I was finally able to leave. I got to the school after the program had ended and about the time they were starting to eat for the picnic.

Today I went back to meet with his PC and get the results of the echo. The timing with this appointment was actually pretty nice. I picked up Molly when she was done with kindergarten for the last time and headed down to his appointment. I got back in time for Jimmy and Emma to get out.

Dylan's cardiologist told me that his heart function looks about the same. Still has the leaking from the valve, but the heart can take leaking for quite a while. His problem is that the veins going into his lungs are narrow. He wants Dylan to get an MRI to see exactly how narrow. If they are too narrow, he will need to get a cath to get them expanded. He wouldn't worry about the veins being narrow if he thought that Dylan would need to get his conduit replaced soon, but since he thinks it will be a while before he needs that surgery he feels we need to get this taken care of. He did say one option would be to just go ahead and do the cath but really doesn't want to do it if it isn't necessary.

The plan now is that they will get the pre-authorization for the MRI from the insurance and then will give me a call to schedule it. I should hear from them within the next couple of weeks to get it scheduled and have the MRI done sometime within the next couple of months.

Thursday, June 3, 2010

Happy Birthday Alyssa!

Alyssa turned 5 years old today. How quickly the time has gone by. We had a birthday party for her last Saturday at the park. She invited kids from her preschool class and had a good time. I didn't get many pictures from her party unfortunately. Couldn't find where I had shoved the camera with all of the rest of the things we brought over to the park. Found it in time to get her being sung to for eating cake and ice cream and then put the camera away and had a hard time finding it again.

She is one of the happiest kids I know. Always has a smile on her face and an easy going attitude. She is excited to start kindergarten in the fall. She's hoping to get the same teacher that her sisters and brother had. Should be finding out tomorrow sometime.

Happy birthday, Alyssa! I hope you have a great one this year! Love you!