Ethan’s Journey

 Ethan’s blood tests came back wonky again. I suspect he isn’t always taking his meds as he should be. They keep increasing his dose. Then then have him go back for blood tests. I am frustrated because I refilled his meds on Monday and found them still in their packages this evening. I don’t think, based on the blood tests, that he is taking his medications as religiously as he would like me to think. Apparently, my tone came through when I asked him about it. I am frustrated and tired that I am supposed to be less parent-y to someone that isn’t being as responsible as I feel he should be.  Taking the medications is the easy part at this point. If he takes them as prescribed, he can avoid these blood tests. I just don’t get it. Apparently this is normal for transplant kids at this age. It is typical reaction. That did make me feel better to hear. His doctors are wonderful to be able to help US through it. They help Ethan and myself in different ways. This is a growth phase. When I stan

 Today I woke up early to get cracking at work. I had a mid morning visit with a friend. It was a pleasant visit and I am glad I got to do it. This evening Paul and I did a little bit of work on the front porch project.  Ethan has been watching his monarch caterpillars turn into chrysalises. He always has been interested in bugs. It’s fun to watch. It certainly hasn’t been the worst type of critter on my kitchen table. It was a nice day to have the windows open.

 I had a hectic schedule this morning since the original appointment I made for Ethan’s MRI was rescheduled for a later time (last week they called me to reschedule, even thought this appointment had been made several months ago) for today. They called me to reschedule my 8am appointment for 11:00am. This last minute change threw a wrench in my work schedule. Ethan had to take the day off and it overlapped my afternoon plans. Totally annoying. When we arrived, they put Ethan into an exam room. The way they phrase the screening questions sucks because we have to answer a lot of things incorrectly. For example: Have you had a pacemaker/defibrillator placed?  Yes or no.   The answer is yes, but there was no place to indicate it had been removed with transplant. So that had to be it’s own discussion.  Have you received dialysis?   Yes….but not anymore since the kidney transplant. But there is no spot to indicate that. So each item had to be confirmed and reconfirmed.  Do you have a history

 I put in some extra hours over the weekend and today so that tomorrow afternoon I could have a little play time. The morning will be spent with Ethan getting his MRI done of his brain to track the growth in his head. This has been an on-going thing and they suspect it is nothing to be concerned about. It is still “one more appointment” Ethan has to go to. He has complained about this and other appointments and just wants the appointments to stop. If we backed the clock 2 years ago, he would realize these appointments are far less frequent that they used to be. I do understand his frustration as there is always something to worry about medically. They have to give him contrast. Which means he will have to stay a little long to flush that out of his system and protect his kidney.  I also get on edge. I know these appointments are supposed to go smooth but I always feel like I have to be on guard. I feel like there will be some sort of mistake made and it will be my fault for not catchin

 Avery was excited about her lunch with her Physics teacher. She got to meet the other kids that are going for a physics major at Brockport. I think there are 9 total. Paul and I did lots of work outside in the yard today. We are still getting our sidewalk/patio project done. It’s getting there.  I stained a little plant stand I bought recently. I didn’t like how light it was and I added a bit of color and personality. One of our neighbors had two dogs, one is a beagle that has the famous began bark. The other is a smaller dog. They were inside. It sounded like they were in some sort of torture device. At one point we could hear yelling. My back is a bit sore tonight so I laid down for most of the evening. A good weekend where much was accomplished and we had some fun time too!

 Today Avery and I met up and ran some errands. We had fun. I heard all about the new people she met and the different things she was doing. Her room mate likely will not stay on the weekends. Avery likes her. They communicate via text mostly. Her roommate left this weekend as well (hence the text communications). Avery got some shelves for her room and a step stool for her bed. Her bed is quite far off the ground. I was supposed to stop at Lowe’s and forgot. This is for materials for our sidewalk/patio project, which is coming along nicely. By the time I got home, I had realized I had not picked the things up that Paul requested. Crap! I had Ethan help unload and put away the groceries so I could go BACK to Brockport. Ugh!  We then made a spur of the moment decision to meet friends out for dinner. Except I had already eaten. I happily munched on Paul’s French fries. We listened to a band and hung out. It was a nice evening. For anyone interested in writing/sending mail to Avery, this

 Day one without my Avery. We texted a fair amount today. Things are going well. She went to the planetarium. I have pictures I forgot to post from move in day. Avery got her mailing address. Send her something embarrassing. Her Mailing Address is: Avery Diiulio 350 New Campus Drive McFarlane Hall Rm # 257 Brockport, Ny 14420 I kept myself busy with work. I did miss Avery around 3:00 when she normally comes home from work. She asked me if I want to come visit tomorrow. I said yes! I have a few things packed for her I can drop off. I will need to hide more cards for her though. Tomorrow morning will be busy coming up with some silly cards! I went out to dinner with a group of old co-workers tonight. It was fun. They will forever be my family! I am thankful for the friends I have that I can go weeks to months without seeing and pick up where I left off. That is process. As I tucked myself and Jiminy into bed, I am also thankful for people or things o give my love too. Jiminy kept licking