It doesn't seem possible that another year has passed, but it has. I wrote a total of 2 posts for 2012, with both of those being posts that I wrote for our local Down syndrome support group and that I just cross posted on my blog for some promotion of the events we were hosting. I didn't write a single post about any of us. Another sign to me that blogging really isn't for me, but maybe this will be my year. I am reading blogs again (save for a few that I never stopped reading), and I decided to check on this blog. Even though I haven't posted anything, I have people looking at this blog everyday. The top posts are no surprise to me: Gratitude and Blessings and Q is for Quotes. I think that people who do get directed here may have googled one of those key words. Maybe people want to be reminded of counting their own blessings. Maybe they are looking for a quote. Who knows? It just seems to be very popular themes, so it is a reminder that I need to be writing down my blessing more often and sharing quotes too. It seems that in the past few years, I have really slacked on my journals. I journal about everything--lists of to do's, prayer books, quotes, musing of my everyday thoughts, etc. Or I use to journal I should say. I miss it. I want to re-connect with myself again. So here I am. We will see how this goes for 2013......
Our home computer is on the brink of extinction--it has been months since we have been able to get on and properly use it. I can't get to sites, long delays in refreshing pages, etc. It probably needs to be cleaned, but at the rate electronics are developing, its probably best to just buy a new one. (this one is 3 years old) I am debating on whether or not I need to just get a laptop versus a desktop. I like them both for different reasons. We have smart phones and an iPad to browse the Internet on and for the most part, use them about 90% of the time. So, that being said, I am going to try to do my best with what I have until I can get something new. Tonight is a good night as I am able to type without having to wait on the computer to catch up with my fingers on the keyboard.
I will have to say that overall we have been doing well. Katie and Blake both had great cardiology check-ups this past year. Blake had a huge growth spurt in the past year. It hasn't affected his heart and we hope that he will continue to do well. A local chapter of Mended Little Hearts (cardiology support group which has chapters nationally) was started here in this area and I joined, but I have only been to the first meeting in the past year. I hope to do better in the upcoming year. I have yet to meet any parent that has multiple children with a heart defect. Blake and Katie both have their pulmonary valve. About 85% of children who have ToF usually get a prosthetic valve. (that was the number given to me by one of our cardiologists--I haven't looked this up to confirm and it was several years ago that I received this information.) Blake's echo that he had last month showed that he has moderate leakage from his valve. It was stressed to both he and I at the doctor's visit that if he starts exhibiting any symptoms such as dizziness, heart skipping beats, etc, that we need to report those to the cardiologist. Evidently if his pressure gets up to a certain point, he would have to have the valve replaced regardless if he had any symptoms and if he starts having symptoms they will have to do a MRI of his heart and cath to see if another surgery would be needed. We know that there is a possibility that both of our children could have future heart surgery--it is nerve wracking to think of going through it again, but you do what you have to do. I was told that they are doing some of these procedures by cardiac cath in Europe right now, but are in clinical trials here. It would be wonderful if they ever needed a new valve, that it could be done via a cath versus an OHS. Blake played football again this year for school. The conditioning is tough, but it really is good for him and we have the doctor's approval to let him play every year. I have to admit that I have not seen him play at all in middle school. I physically cannot do it. I get upset thinking about him even playing and the last time I even talked about trying to go, I bawled my eyes out in front of the other person I was talking this over with. I don't know if he will even try to play in high school, but if he does, I will cross that bridge if and when it happens.
Something that the cardiologist said surprised me. He said that patients with congenital heart defects usually stay with their pediatric cardiologist their entire lives. He said that some huge medical group just passed a ruling allowing a certification to be obtained by MD's to allow them to be certified in congenital defects. Currently the rotation through pediatric cardiology is a short couple of weeks. Kind of like a "hey, this is what we do with those type of patients kind of visit". We have a ways to go before either child will be considered an adult, but it makes perfect sense that we would stay with a pediatric cardiologist forever. I just thought that you would transition to an adult cardiologist at the appropriate time--same as switching from a pediatrician to an internal medicine doctor. What the heck do I know??
Great news on the Infantile Spasms (seizures) front. We went for a check-up in November and Katie is off the seizure medicine completely!!! Yay! We had gotten the go ahead to start tapering her if we wanted back in Feb 2012, but we told the neurologist that we would stay on her current dose. Well, several months passed by with increasing difficulty in us giving Katie her medicine, so we decided to start weaning her. By the time school started in Aug, she was only taking a dose every couple of days. She has done really well without the meds. We go back to the neurologist in June to re-evaluate as long as she doesn't have any signs of seizures. I don't think we have seen a huge change in her neurological status since being off the medications. She tolerated he medication very well when she was on it and she seems like the same person off of it.
I tend to write too much when I blog, so I will share more of what has been happening in some future posts.
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