Week in Review

This past week we had several more appointments. The first appointments were on Tuesday. Both Kyler and Caden had follow-ups with Dr. Van Gundy, our cardiologist. Because both my boys' heart defects are relatively “minor”, I never get too anxious about going to see Dr. Van Gundy. And, thankfully, both boys are doing great. He said Kyler's pulmonary valve still has a little pressure in it, but that is the way he wanted it and from everything else he saw in the echo, all the other parts of the heart are functioning as they should be. Yeah! And, for Caden, he said he sounds great! He hadn't gotten a copy of the echo done at Stanford in April so he couldn't comment on that. But we talked about the medications he's on and what we should do to adjust dosages, etc. He discontinued one medication completely (yeah!). And, he left the other three the same. No changes in how many times/day or amounts he gets. But because he is gaining weight (he weighs 10.2 now!), he is outgrowing the dosage so at some point, he will have weaned himself off completely. So we were happy about the report from Dr. Van Gundy. We actually spent some time discussing Caden's sweatiness. He gets really sweaty and hot sometimes and we weren't sure if that was something to be concerned about. After talking to us some more about it and doing an exam on Caden, Dr. Van Gundy said he thinks it's just Caden and that he runs hot. He doesn't think it is anything too serious so that is good. Overall a good report on both our boys!

On Wednesday, a physical therapist from Easter Seals came to evaluate Caden and determine where he was at with his fine and gross motor skills to see if he qualified for services or not. She was here an hour and a half and did lots of play exercises with Caden to see how he responded. She said she was really happy with what she saw. She said he is definitely delayed and qualifies for services. But she said he seems very motivated to do things and he is making appropriate movements with his arms and legs which indicates that cognitively things are in working order. Overall, she said the delays she sees are probably solely due to the eight weeks he spent lying flat on his back in the hospital, not related to any other issue. We're not sure when therapy will start, but I'm hoping soon. She said there can sometimes be a waiting list but they will let us know as soon as they have a therapist who can take him. He will start out with PT once a week and then as he gets older and can tolerate more, they might move him up to twice a week. But that will have to get approved through the Regional Center since they are funding the therapy.

Then, on Thursday, our service coordinator from the Regional Center and the RN from Sacramento County of Education (SCOE) came to get everything in place for Caden's services from both organizations. We are getting him set up with PT, a feeding therapist (whose background is speech pathology), an infant development specialist, and respite care through the Regional Center. And, through SCOE, we will be getting monthly visits from an RN, an OT evaluation (who will work in conjunction with the PT) and possibly a speech assessment when he is a little older. So, a long list of services for a little guy. But we are really happy to be getting him going so early. We know from our experience with Kyler, that early intervention is huge in helping kids catch up in areas of delay.

This week was complicated for us by my coming down with some kind of bug. I think I had some sort of flu because a couple nights I woke up completely drenched in sweat. But I never felt a fever during the day. I've just had sort throat, congestion, runny nose, achy body, and now coughing and respiratory issues. I don't enjoy being sick, in general. But the worst part about this is the risk it places on Caden. He can't afford to get any respiratory illness. It could be very devastating for him! So I have been trying to limit my contact with him, but that is hard since I am his primary caregiver. Greg was out of town for work on Thursday and Friday and that is when I got the sickest. Thankfully I had a friend who was able to come help me out for a few hours on Friday morning so I could rest and stay away from Caden. And, another friend brought us dinner so I didn't have to try to get that done in the midst of everything else. And, today we have some friends that took Kyler to church and Sabbath School so Greg could be home to take care of Caden. We are truly blessed with our wonderful friends here!

I ask for your prayers for me to get well very soon and for Caden to not get sick!