So you may be wondering what the title of this post is about. WahWahWah is Kevin’s way of saying chihuahua and what he calls Pancho, our chihuahua. Kevin is talking so much more, the speech therapy is doing wonders. He is getting to be such a big boy with all of his words. It is nice to finally be able to decipher what he wants.
In the past week we finally put our foot down and Kevin is sleeping in his bed for the entire night. The first night was a little rough, but last night he only woke up once. I have a much more restful night of sleep without waking up to a two year old’s foot in my face.
Kevin has two new interests lately. He loves his keys. Actually he loves my keys. I rarely let him play with them as we have had lost keys on several occasions. We gave him a set of his own play keys, but he knows the difference and prefers mine. He also has started climbing into to cabinets. Mine are full so he can’t really fit all the way in it. When we go over to our friend’s, Nathan and Jeni’s, he gets in their cabinet as well. He just hangs out in there, not sure why, but he seems to like it. When we cleaned out our cabinets the other day he had fun climbing in the empty ones.
Now that Kevin’s appointments have past and all seems to be well I feel like I can finally breathe for awhile. I have gotten better, but his appointments cause me huge worry and anxiety. As I am sure all of you know Kevin is the sweetest little boy around and the thought of him going through more surgery breaks my heart. I sometimes feel like we live 6 months at a time. After each appointment I can relax for 6 months until the next one. Just when I start to feel sorry for myself I remember that they are thousands of parents that only wish they had their children with them to take to appointments. Even with modern medicine too many babies that are born with heart defects don’t make it. I am part of a few heart defect support groups and I am deeply saddened every time a child is lost. It also makes me more determined to not let the fear of that happening to us take away from the joy of having Kevin in our lives.
When Kevin 16 days old I was asking for nothing short of a miracle. You all know the story and know that what happened was extraordinary. While that whole experience was the most difficult time in our lives it gives me strength to get through the rest of it. These appointments are a piece of cake compared to the first few weeks and whatever the outcome we will handle it together and we will be ok.
So in case you were wondering, that is what I am thinking as these appointments get closer. As Kevin gets older he will have to deal with his own feelings about his health. I hope that I can be a good example for him and he will have a positive outlook.
I won’t ramble any longer Enjoy the video and pictures. The last few are Kevin self-portraits - he loves grabbing the camera and snapping pictures of himself, the ceiling, walls, and other random shots!
Kevin had his appointment today with Dr. Pyevich, his cardiologist. This was just a regular checkup and echo, since she has not seen him in almost a year.
Everything went well and there were no surprises. His blood pressure was good, his saturation level was at 98%, and she said things generally looked good. He had gained some more weight and now weighs 24 1/2 pounds, which puts him at the 8th percentile on the chart. He wasn’t very happy during the initial checkup, but he had a fun time in the waiting room with the other kids that were there.
Then came the echo, which we weren’t sure he would put up with at all. We got him laying down on some pillows and he was putting up quite a fit until we put a movie in the tv and the doctor gave him two suckers. Kevin loves suckers! So he was busy watching tv, licking each sucker and feeding them to us, and watching a light-up Pooh doll a nurse was holding. This kept him quiet and still long enough that they could get the views that the doctor wanted to see, much to our relief. We have an appointment scheduled for next Wednesday as well for a sedated echo, but hopefully this one will give them enough information that we won’t need to go back again. They will review the results in Iowa City on Monday and let us know if they want us to come in on Wednesday.
The only thing the doctor didn’t get a view of was his aortic arch, which had repaired along with his pacemaker surgery. To do that she needs to go up near his neck and he was having nothing to do with that. Since his pulse is good in his legs, she doesn’t think she will need to see that right now and it can wait another 6 months for his next echo when maybe he will be a little more cooperative.
After the echo we headed up to get a chest x-ray. Normally we do this before seeing the doctor, but it really makes him mad and we wanted him to be as calm as possible for the echo. We also didn’t have to do an EKG - either because they forgot or they decided he didn’t need one. This was a relief too, because he really hates getting all those stickers put on him and it’s a struggle for him to sit still long enough to get a good reading.
The x-ray was traumatic as always. The contraption they put him in to keep him still looks like something out of a torture chamber (see the pictures). We feel so sorry for the little guy, but he cries and takes it. They will look at the x-ray later too and let us know if there are any problems.
After the long morning, we stopped at McDonalds so he could “eat” some chicken nuggets and apple slices. We say “eat” because although he’s eating much better than he was, we always leave quite the mess under his high chair from the stuff he spits out or what doesn’t actually make it into his mouth.
So it was a slightly traumatic morning, but a good visit with no bad news - just the way we like it.
Kevin had a great Christmas. He enjoyed all of the presents and seeing family. I am so glad that he was not sick this year and was able to enjoy everything. For New Years we took Emily and Kevin to a water park in Burlington. Kevin wanted to ride the go karts so badly but had to settle for the little kiddie car ride. Emily drove the go karts and I think she drives a little bit like her mother!
Kevin has an echo on January 9th. We are going to try to do it without sedation, but I have a feeling we will be coming back for a sedated one. He is still very weary of Dr’s and nurses touching him. I hope we are able to get some good pictures of his heart. Last May was his last echo, so it has been awhile. I am assuming everything will be fine, but I guess you never know. Speech therapy is also going well. Kevin is saying more words and the words he says are much clearer. I think in a few months his speech will be much improved. Enjoy the pictures and I will post an update after his appointment on the 9th.