Neurology

We had our neurology appointment on Friday. Ethan was thrilled since that was the first day school was open since Christmas break started - and he was able to miss it again! :) He's already threatening that he's going to be too sick for school in the morning. Sorry Ethan, not going to work! He has not caught on yet that trying to play the sick card the night before makes it a bit less believable!

Anyway, the appointment went really well and we discussed a lot of concerns we've been having. One of the things we discussed was his headaches. Dr. Friedman feels he's still having too many headaches, so we increased his medicine to help with that. Hopefully it does the trick!

Another concern that the doctor raised was the fact that he hasn't gained any weight in the past two appointments. He still was at the same weight at this one even though he grew in height. This makes over 9 months of no weight gain, and this is not something we want to hear with a heart kid - he needs the weight! In addition to increasing the headache medicine dose, we are also giving some of it in the morning now. This is the medicine that has a side effect of increased appetite and weight gain. Hopefully with the new dose and taking it in the morning it will help make him hungrier to eat throughout the day! The medicine is supposed to also cause sleepiness, so hopefully it will help with his sleep issues at night! We can hope!

We discussed his anxiety and tics that he developed. Dr. F brought up the fact that this is really common in autism and it's not really something to be too concerned with. The medicine that would help ease the anxiety and tics are not safe for heart kids. It affects the blood pressure so it is not even an option for him. I let him know that I didn't want Ethan on another medication anyway, so that's good news. He did let me know that these tics come in waves. They should ease off over time and only really return when he's overly anxious and stressed. He's already been improving with it over vacation, so hopefully it will keep improving and go away completely soon!

Dr. F also discussed Ethan seeing a psychologist to evaluate his autism. We've known that Ethan has had autistic tendencies - we've been discussing it for about two years now. However it is not severe autism. He is high functioning and mild thankfully. Even though it's not severe, we still need to address it. The psychologist will evaluate him and apparently be able to tell us where on the spectrum he is. This will help determine what kind of therapies or help he may need. Unless Ethan suddenly becomes social during the next six months, at his next appointment we'll set up the evaluation.

Other than that, we had an evaluation for OT again. We did this testing a year ago and it showed that Ethan would benefit from occupational therapy. His school did their own evaluation when I submitted the forms, and they claimed that he did not need it after all. I let the doctor know this, but he said that the school would only test for things that would affect his schoolwork. This includes things like holding a pencil and other fine motor skills. He actually excels in this so school denied the OT request. The doctor said to look into returning to outpatient therapy. He can receive therapy to help with his motor apraxia, coordination, and sensory issues.

Overall, the appointment went really well. Hopefully his new med change will really help out his headaches, weight issues, and sleep problems! Please keep him in your prayers for this! Also please pray for his anxiety as he returns to school. I know he's really nervous and stressing about going back. Once he gets back into the swing of things he'll improve, but he's gotten used to being off for so long it'll be tough in the beginning for him.

Here are a couple of pictures we took today. :) We went down to the metroparks to watch giant ice chunks going down the river. The kids (and I) were really impressed!

Trying to catch up!

Apparently the holidays kept me too busy for blogging this year!

Cardiology:

playing the computer in the waiting room

We'll start with Ethan's last cardiology appointment. It was a long appointment, but it went pretty well so I certainly can't complain! He had been showing signs of low oxygen saturation numbers for the week prior to the appointment. When we were at the doctor they took good readings - mid 70s for him in his right hand. However his left hand was low 60s. I almost always get around a 10 point difference in his hands, but just commented about it to Dr. G at this appointment. I assumed it was normal due to his anatomy, but Dr. G gave me the weirdest look which made me say perhaps it's not that normal after all! He said that Ethan does not have the anatomy to cause that issue. He was pretty confused and surprised as to why that's happening! Oh well, apparently it's nothing to worry about since it's been going on for years!

Ethan had an echo at the appointment. Things looked good, but they once again weren't able to get a view of his pulmonary artery. Hopefully it's still open and doing well! His SVC looked perfect though! YAY! This is the one in his neck that they just stented for the first time during his last cath.

Dr. G did talk about his upcoming plans. He said he is done with the caths for Ethan. There's nothing else he can work on in his heart cath-wise. He's basically been stented and re-stented everywhere possible, so the next step is the open heart surgery. There are no specific plans for this surgery yet - and we usually don't know the exact specifics until the day before surgery anyway! Things always change with him so much that it's hard to get an exact idea especially this far in advance. The basic idea is to do what we planned for him last winter. He was going to have this open heart before they decided to try a couple more stents instead. They will replace his conduit with a larger one and remove his aneurysm. We are going to wait as long as physically possible before doing the surgery. It will all just depend on Ethan and how he feels. We'll keep an eye on his sats, energy level, and echos to see when things start narrowing again and he needs the surgery. We don't have any idea right now how long it will be, but we're hoping to get like another year out of his heart the way it is! That would be amazing! :) We return to cardiology in 3 months for another echo and recheck.

That pretty much wraps it up for cardiology. Now it's just a watch and wait game.

Other medical:

Ethan has his junky lungs back. They were clear for a few weeks and that was a nice break! Now he's junky, coughing, and back to full-blown treatments and vest therapies. He's definitely not happy about that!

He had a rough couple weeks with his headaches. This was right before his cardiology appointment time. About a week after the appointment his headaches decreased again. Now we're back to just about one a week thankfully! He had a really bad one last week where he just curled up in a ball on the floor pressing his face into the carpet saying his head hurt so bad. :( I'm so relieved that they're not every day again! Hopefully we can keep them away.

Ethan lost his first tooth! It took so long for this tooth to come out because he would never let anyone touch it! It finally popped out when he was trying to pry a Lego piece off another Lego piece with his teeth! Thanks to his Coumadin it bled quite a bit. I was surprised since it was so loose for so long! Well, after some wads of gauze for a little while it stopped and he was pretty excited that it came out! The one right next to it is now pretty loose. We'll have to see if he works on getting this one out faster than the last one!

We're still dealing with on and off sleep battles. He'll go a few days of going to bed well and sleeping most of the night, then suddenly it will stop and he can't fall asleep at all for a week! Now I've resorted to rocking him to relax him before sleep and bribery. He also has his lavender scented Scentsy buddy to cuddle with to help relax him. He gets a coin for his new piggy (truck) bank every night he goes to bed and sleeps through the night. So far he has four coins!

Christmas prep:

We had a very quick but fun Christmas season! John and I were able to take Callie to her first concert - TSO! My parents and brother-in-law also came with his girlfriend. It was a great show!

It seemed time really got away from us this season. We didn't even get to put all of our decorations up this year!

The kids went to a Christmas activity at the metroparks. They had a lot of fun doing crafts, decorating and eating cookies, and of course seeing Santa! Ethan was pretty stressed out and anxious about the whole experience, but he really wanted to tell him what he wanted for Christmas. The Santa must have thought Ethan was crazy because he was super nervous and doing his anxious face tic thing he developed recently. It's so frustrating, but hopefully he'll calm down soon and stop doing it. Well, the Santa was really good and patient. He kept talking to Ethan and let us take lots of pictures to get one where Ethan was somewhat smiling. :)

We also attempted professional family pictures this year too. LOL, that was an experience! We always just take our own at home in front of the tree or something to send out as Christmas cards. Well, since I had a coupon we decided to go to Portrait Innovations this year. I expected to have the place to ourselves during our appointment time. Silly me. There had to be at least 40 other people there - all the families and tons of kids running around! That sent Ethan (already in stress mode from the thought of going out and taking pictures) into super anxiety. He apparently forgot how to smile completely and just kept making weird faces in each picture attempt. It was insane and he just couldn't calm down and relax with all those people around and watching. It was definitely not an experience we're going to have again for a LONG time! They took 79 pictures and only 2 were acceptable. Granted, the ones of just Callie by herself were gorgeous! I don't know how I can have one child so photogenic and the other one so not. LOL!

Callie also sang in our church's children's program the week before Christmas. She was so excited and they did a really great job! She's in the gray dress with the red tie around the middle. She's in between the girl in the black dress and the boy in the sweater vest. I took this before the rest of the kids came in and blocked her from view!

We had a great Christmas seeing our family. The kids of course were inundated with gifts and they've been very busy playing with them all through this school break. We also were able to celebrate my grandma's birthday and a New Year's dinner at my other grandma's! It's been very busy, but a lot of fun! They also have an extended Christmas break from school since the cold weather has cancelled school today and tomorrow as well!

 

 

We have a neurology appointment and genetics appointment this Friday morning. I don't know what all to expect for this, but hopefully it goes smoothly!

Friday is also John's birthday! :)

I'll post up after his neurology appointment to let you know how things went! Please keep us in your prayers! Please pray that Ethan's lungs clear up, his headaches stay away, and that his sleeping can improve! Also please pray about his anxiety. I don't know what can be done about it at this point - I think he's probably too young and unwilling to talk to anyone about it to see a psychiatrist or something. Last but not least, please pray for Ethan's appetite. I know he goes through swings with it, but right now he is struggling a lot with it. Hopefully it'll kick back up soon and he will start eating again before he loses weight!

And if you follow me on Facebook you've already seen these, but here's some of what our naughty dogs have been up to as well.