long update!

There are a lot of things to catch up on!

We will start with the medical stuff:
Starting Easter weekend, Ethan starting getting sick. He would get fevers each night, eat very little, be tired enough to actually fall asleep at night, complain of achy arms, legs, and have more headaches. It was really strange though because during the day he would feel good and have no fevers! It was the strangest thing to be healthy during the day and then get sick each night! He still has the wet cough that he's had for over a month now. I figured with all the other symptoms that his wet cough turned into pneumonia again. We went to the pediatrician yesterday to get checked out. She listened to his lungs and said they sound really good once he actually coughs. That is a huge relief - no pneumonia! :) The doctor said he has a bad sinus infection. Another thing she figured out was he is getting all of his 6-year-molars right now! She thinks he might've had a virus along with this, but seems to be getting over it already so that is good. His sinuses and teeth are most likely the reason for his weird fevers and pain. We'll continue with all of his breathing treatments and vest therapy. He is also starting amoxicillin to hopefully help him out. Tonight is the second night in a row without a fever, so hopefully we're on the right track to getting healthy! :)

He also has petechiae all over his body - mainly his chest, but also on his back and legs. The doctor ordered labs to make sure his levels were all within range. The doc called later that night with his results and apparently his INR, PT, and PTT levels were a little high. She was concerned about this, so we spoke to cardiology today and got their opinion. Our cardiologists are out of town, but the on-call doctor said that his levels are not in a dangerous range for him. He does want labs repeated in a week to make sure everything is okay and hopefully back in range.

John also has had a very busy couple of weeks. Many of you know already through Facebook, but for the rest, John was in a motorcycle accident 2.5 weeks ago. He is okay thankfully, but has a broken collarbone and tons of road rash. His road rash is healing well now even after going through a round of infection with it. We just returned to the ortho doctor today and his collarbone is starting to heal. He broke it in 4 places, but the middle section that was completely loose has started to connect with the rest. It is realigning and starting to heal well! We return in 2 weeks for another x-ray and hopefully will be cleared to remove his sling and start using his arm again. Here are some pictures about the crash.

Easter:
We had a great Easter weekend! I hope you all did too! The kids went on an Easter egg hunt at Lakeview Park. They had a lot of fun collecting eggs and taking pictures with the Easter bunny.

We had a great time having family dinners and seeing everyone. The kids loved finding their Easter baskets and enjoyed their baskets and gifts from everyone. In addition to all the gifts from all their grandparents, the kids got their candy and treats Easter morning. Ethan especially loved his Lego kit and disappeared to build it all morning! :)

School:
Things have been going really well at school! I'm so proud of how the kids are doing! The kids brought home their report cards a couple weeks ago. Callie always brings home great report cards, so I was happy as always with hers. I was however very surprised (and thrilled) with Ethan's report card! The past cards we've received have not been good. Basically failing everything. This time was completely different! He has mastered everything except the boxes that have check marks in them. I can't believe how much he has improved just recently! He's enjoying attending school. He's really loving learning how to read and tries to write letters/signs constantly by sounding out words. I love it!

Callie's report card (above)

Ethan's report card (side 2)

Ethan's report card (side 1)

one of Ethan's spellings (that is supposed to say "handcuffs")

He also was picked to have his artwork displayed at the upcoming Art Fair! I'm so proud of him and he's so excited to have been chosen! Callie is certainly jealous since she has never been selected to be in the fair! She certainly isn't used to being outdone by her little brother! LOL!

My last point is just a little sales pitch! :) I'm now officially selling AdvoCare products! John and I started using the products 2 months ago. We each did the 24-Day Challenge which is a cleanse and supplements to kick start your weight loss/wellness program. John actually lost almost 20 pounds already! After the challenge we continued on with some products to maintain the health benefits and I couldn't be happier! My main problem was a lack of energy (probably due to the fact that I don't get enough sleep at night between work, school, and the kids)! I went to Starbucks on a daily basis, and that is not easy since the nearest one is 20 minutes away. Now with AdvoCare I don't go to Starbucks at all - and I don't miss it one bit! I'm continuing taking products like Spark (a drink for energy and mental focus), Omegaplex (great vitamins/fish oil), and ThermoPlus (helping burn fat and increase energy). I love the products and couldn't be happier with how much better I feel now! I have had major problems with healthcare products in the past. My stomach is extremely sensitive and I can't even handle a regular daily vitamin without getting sick. These products don't make me sick and help me so much! Even the energy drinks aren't like normal ones you find in the stores. They don't make you jittery, they are sugar free, and they don't contain anything to increase your heart rate or cause any health concerns!

AdvoCare sells so many different kinds of products and they are all natural and good for you. There are products for overall wellness (vitamins, aging health, women's health), weight loss, and performance elite (muscle building, strength training, and overall muscle toning, etc. There are great benefits and you will be amazed with how you feel!

I just wanted to let you all know that if you are interested in any of these products, please feel free to let me know. I have a website that you can order products directly from. Click on the "products" tab to search all the different product options. Then click the "shop" link to purchase products and have them sent directly to you! You will be happy you did! Also, if you have any questions about anything feel free to contact me. You can email me directly at jkbradley44@gmail.com, text me at 216-394-2741, or Facebook message me. I will help answer any questions you have and help point you in the direction to give you the best results! I can also provide some great recipes and tips that have helped us on our journey! :)

Here is the website:
https://www.advocare.com/140457681/default.aspx


Overall, things have been going really well here. John is continuing to heal and is feeling better each day thankfully. Ethan is already starting to feel better, so hopefully he will continue to improve quickly as well! Thank you for all the prayers and support! I will update again soon to let you all know how his labs went, how he's feeling, and some other fun things that are coming up! For now, we have our first soccer game for Callie tomorrow - the first two were rained out. We also are in full swing with softball practices and games will start in a couple weeks. We're definitely keeping busy, but doing well thankfully! I'll update again soon with our upcoming activities!

cardiology and random updates

Today Ethan had a cardiology appointment. Ethan has been doing really well and I didn't want to even go in for an appointment because I didn't want to "rock the boat". We went in and had our echo first. Everything looked good and they were able to see some blood flow in his pulmonary vein. This leads us to believe that it's not occluded again, so that's a very good thing! We don't know for sure because Ethan's anatomy doesn't allow us to get a good view of it at all, but just based on our past experience we think it's open. Ethan's oxygen saturations were 72% today, which is good for Ethan.

We have been passing around a cold through the house lately. The kids have been congested with headaches and sore throats for the past few days. Yesterday John caught it and had a fever, aches, headache, congestion, and sore throat. Today John's starting to feel better, but I definitely caught it now. The kids still aren't feeling good, but hopefully we can all turn a corner soon! I've been Lysoling everything in the house constantly - even though it doesn't seem to be working yet! :( Even with Ethan not feeling well, his lungs didn't sound junky today! :) Definitely a huge blessing! Hopefully we can keep them clear and none of his congestion travels into them!

Upon listening to his heart, the doctors noted that his murmur has increased. It was listed as Stage 3 on the chart and now it's Stage 4. His heartbeat is very visible on his chest just by watching it - I've noticed it's become much more obvious these past few weeks. I brought it up to Dr. G, but I also don't know if I've only just noticed it or if it's gotten worse lately.

We also brought up the iron topic again. Nothing happened with it during our last discussions because we never came up with a solution for the liquid/adult pill being split for his correct dose. Today we decided that he'll start taking a multivitamin with iron to start. We'll see how things look at his next appointment in 3 months. If I remember correctly, his hemoglobin is around 13 and for his anatomy he should be around 18. Hopefully the iron will help increase this count. If the vitamin iron doesn't do the trick, we'll look into figuring out a regular iron for him to take instead.

Basically, we're happy with how Ethan looks right now. We have no plans to change anything (other than iron) or to do any intervention soon. The next step will be the open heart surgery to replace his conduit. We are just going to continue watching and waiting to see when that will happen. We are looking to wait until his saturations are in the low to mid-60s. That will tell us that he definitely is needing the surgery. Hopefully that can wait a LONG time and we don't have to worry about it anytime soon. We'll continue our every three month appointments, at home monitoring, and just watching to see what he needs.

On the way out of the hospital (after our obligatory Starbucks stop of course) a policeman stopped us in the lobby. Now Ethan had been slightly anxious about the cops all over the place - for some reason there were tons of police outside as well as inside today. Ethan LOVES police but still gets nervous when he sees them for some reason. This officer stopped us and asked me if he could give Ethan something. He asked Ethan what his name was. He then pulled out a little badge and told Ethan he was now an official police helper at the Clinic! He pinned the badge on him and told him that we can now count on him! Ethan felt so special and I was so happy that this policeman took a few minutes out of his day to do that for him! Even something that might seem like a little gesture to him just really made Ethan so incredibly happy - especially after hours of appointments! :) I wish I would have gotten a picture of the two of them together!

That pretty much wraps up the medical stuff.

Ethan's class is planning a field trip to the zoo in the beginning of May. I signed up to be a parent volunteer since obviously he wouldn't be able to go roaming the zoo without me there! Each parent is supposed to be assigned three children to be in charge of. I contacted Ethan's teacher today to make sure that him using a stroller to get around the zoo wouldn't cause a problem. He'd never be able to walk around there, and my back would break if I had to carry him! She said a stroller would be no problem and she also let me know that I was only assigned him with no other kids to watch. I was a little surprised, but she probably just wanted to make sure that if Ethan needed to rest, other kids weren't being held up because of him. It's probably a good idea.

I spoke with another heart mom about a stroller she uses for her son. He's close to Ethan's age, so I figured she might be able to recommend a good one. She said she absolutely loves the one she uses and it goes up to 75 pounds, so she gave me the info on it and we'll be looking to get that soon. I have to get it off Amazon or something since our regular stores only carry strollers that hold up to 50 pounds. Thankfully the one she recommended is only $400 whereas most of the other 75 pound strollers were closer to $800! Still crazy expensive for a stroller, but at least it'll let us get around much more easily! It also has a basket thing underneath to hold oxygen if necessary, so that's great. :)

 Another thing we were able to do was go to my friend's son's 1st birthday party! He is absolutely adorable and we had a great time at the party! There were lots of kids for Callie and Ethan to play with, great food, and fun goody bags for the kids to enjoy! :) Even Fiona got in on the fun when the balloons came home! ;)

 

Callie has another spelling bee to attend tomorrow night (Thursday). She won her class round, so now all the class winners are going to compete in this round two competition. The winner of this goes on to the county spelling bee! Unfortunately, Callie has not put forth much effort (or any at all) in studying her words, so we'll see how well she does tomorrow! I'm still pretty excited that she's involved in this! Hopefully she feels better so she can concentrate!

Other than that, we're just keeping busy with school, work, girl scouts, soccer, and softball. Our school has decided to make each school day a half hour longer from April 7-May 30. This will make up 4 of the snow days we used. The fifth snow day to make up will be done with a "blizzard bag". This is apparently a bag of work that the kids will have to complete over spring break. That should be interesting. Ethan asked to play soccer and baseball this spring. Unfortunately, I had to say no since he's not allowed due to his heart. :( He was sad, so instead he's going to sign up for the S.N.A.G program (starting new at golf). He also expressed interest in returning to karate. I told him to start with the golf since now's the season for it. In the fall if he's still interested, we can look into doing karate again. It'd be good for him, but I just don't know if I can handle four separate activities at once! And that's not even including my own work and school!

I forgot to add in pictures of the kids riding their quads. The weather finally warmed up enough for them to get out and ride a few times! They absolutely love it and have such a great time riding around!

Please keep us in your prayers for health and sleep. Ethan is definitely struggling in the sleep area again! Also please keep our heart friends that are sick right now (one in particular is waiting for a new heart) as well as those who have recently earned their angel wings. It has definitely been a rough few weeks in the heart community, but I pray for some peace and good news for a while! Thank you all for your love and support!

Catching up

Ethan had a parent-teacher conference last week. Apparently he is really coming out of his shell and participating in the classroom activities. I was really happy to hear this! He is doing his activities with minimal reminders to stay on track. He has also started raising his hand to answer questions! However, when he raises his hand he puts his hand in the air and yells "Me! Me! Me! Me!" We definitely need to work on calm ways to get the teacher's attention! Honestly, I'm just happy he's listening to the questions and wants to give an answer! In addition to answering questions, he volunteered to read a page out of a book in front of the class earlier that week! He stood up and read to everyone at circle time. I'm so excited! :)

He was tested per the state requirements and apparently did not do very well. The teacher was not happy with the way the tests had to be administered and did not think they were accurate and fair for his age. She also feels that he does not test well because a lot of the things he missed on the tests he is able to do at home and privately in class. We definitely need to work on his math skills and higher number recognition. He's behind in that, so we'll incorporate that into his tutoring and working at home. We've been so focused on practicing his reading that we've totally neglected math! Oh well, at least he's really loving to practice reading his books right now! His teacher is a bit concerned about how he's going to handle the work load next year. She says first grade is so much more intense than kindergarten so she's not sure how he'll do. We will need to discuss this at his upcoming IEP appointment to see how much additional help he'll need to make sure he doesn't fall behind. I know we're going to be fully using Common Core at the school next year and those concepts will probably be a huge struggle for Ethan. Hopefully we can figure out a way to help him understand and not become frustrated.

Another issue we discussed was Ethan's outbursts in class. We struggled a lot with this in preschool. Then things calmed down and he was extremely quiet once he started his ADHD medicine. His teacher always said he was perfect in class - sat silently and never made a noise. Now he's apparently making weird noises like saying "boop boop" repeatedly as the teacher's trying to teach or write something on the board. Another thing he's doing is randomly whistling in the middle of class. The teacher does not think that he's doing it on purpose or even is aware of the fact that he's doing it. She tells him to stop making noise and he'll stop for about an hour before starting up again. I don't know why he's suddenly doing this, but hopefully we can get it under control quickly! Other than that he seems to be doing pretty well in school and seems to be enjoying himself!

After such a long time waiting, we went to see The Lego Movie! We were all so excited and thought everything was awesome! LOL! Ethan thought it was hilarious and plans on having the basement from the movie in his house someday! :)

We have had plenty of snow days from school to relax and hang out around the house! The kids have loved it, and the weather finally cooperated enough to let them play OUTSIDE on their snow day last week! :)

Since the big boys were all out snowplowing, the kids and I were able to enjoy a movie and "Taco Tuesday" picnic in the living room.

Callie also had a really busy weekend! Saturday morning she participated in the Greater Cleveland Problem Solving Competition. Her math teacher was able to select the top four students from each team of teachers. Callie was one of the two selected from her class. Each school had a couple teams of four participate in this. Thankfully our school hosted the tournament that happened in our area. Around 200 students showed up from the various schools. Callie and her team spent their morning working on math problems. They had fun and did a great job! :) I'm definitely so proud of her academic accomplishments! :)

She also finally was presented with her trophy for winning the school science fair a while ago! I'm glad that's all done with! :)

Callie's been pretty busy with Girl Scout activities too! Last week they volunteered at a local church to serve the free community meal to those in need. I think the girls got a lot out of it and I hope they continue to volunteer there in the future. I know they return in a couple weeks for another night of serving.

Saturday night I took her to Southpark Mall for a Girl Scout lock-in! Around 2000 girls attended the lock-in and they had a blast! Some stores stayed open throughout the night for the girls to shop, activities were available for them to do, they watched the Muppet movie at the theatre, and had a giant dance party with a DJ! Callie had so much fun and can't wait to do it again next year! :) 

When I was drying Ethan off after his bath last night, I noticed he had some big bruises on his leg and arm. I asked him what happened and he didn't know, so of course I immediately worried about his INR level! We took out the INR testing machine and started to do the blood work. Well, we kept getting an error code when we inserted the test strips. We then realized that the strips expired a month ago! I couldn't believe it! These are not cheap - in fact they're $175 for a pack of 24. The entire 24 pack was useless. I could just scream. Fiona found the container of expired test strips and decided to eat them this morning. She is SO lucky that we knew they were already expired! I probably would have lost my mind if they were good strips!

Well, I guess it's time to order the next set. :/ Since we weren't able to get a reading on his levels, I had to take him into the lab this morning for a full blood draw. He definitely wasn't happy but he did SO well! The nurses there were excited to see him and all were shocked how big he was since the last time we were there! :) They always are so nice and make him feel special! We sat in the chair together for the test. While they were feeling his arm to find a good vein he said "I don't think I'm feeling very brave today". He was though because they poked him and had to maneuver the needle around 3 times before hitting his vein. He didn't cry once! I couldn't believe it! Of course he earned his bouncy ball as a prize afterwards, then we dropped him off at school. :)

I emailed the doctors and let them know what was going on. They let me know that his levels are great - he's at 1.8. That's actually a little low since our range was 2.0-2.5. But we're happy with it so nothing's going to change. :) Apparently he's just bruising from being his crazy little self lol! I was very relieved!

We're all dealing with some sort of cold in the house. We're all congested and crummy feeling, and Ethan of course still has his nasty cough. We're continuing with his breathing meds and hopefully we can get his lungs cleared up soon!

I think that pretty much sums it up. Now we're just finishing up goalie training with Callie, preparing for the start of the spring soccer season, school, girl scouts, and getting healthy. Please keep us all in your prayers and I'll keep you updated with any news!

Ethan's Journey

It's Congenital Heart Defect Awareness week! Even though I wanted to do a LOT for it this year to raise awareness and support research, once again I failed at that. I did however update his CHD awareness video! Yay me! :) Here it is if you haven't already seen it on Facebook, or if you just want to watch it again. Make sure your volume is up because there's music that goes along with it.

I have just a couple other updates from this week.

Ethan had an great day on Tuesday! I picked him up from school a little early because he had his sleep doctor appointment downtown. Since he's in Kindergarten, the school has a child bring a buddy down to the office so they don't get lost and start wandering the halls. Ethan has walked down with random boys from his class throughout this year - I have to get him from school pretty often due to his appointments. I always ask him who brought him down and he never knows the kids' names. They also walk down the hall like they don't know the other kid is there. Ethan doesn't look at him or acknowledge him in any way. Tuesday however, I was shocked when I saw Ethan walking toward the office with a girl on each side of him - HOLDING HANDS! I could have cried. I wanted to take a picture, but there were other parents in the office and I didn't want them to think I was some weirdo taking pictures of their kids (if one of the girls belonged to them). :/ I was so happy though! When they let go of hands in the office, I told Ethan to say bye to them. He did! On our way out to the car I asked who the girls were and he knew one of their names! I know this may not sound like much to most parents, but Ethan has never told me the name of ANY child in his class. I assume it's because he never interacts with them enough to learn their names. This made me so happy! :)

The appointment also went really well. Ethan was in a VERY cheerful mood, which we don't see a lot so that was awesome! He was laughing and very talkative! He spoke to the nurses in the office, looked at the doctors when they were talking and responded to them, and even interrupted me when I answered questions for him! It was like a completely different child! :) He even sang along with our entire bedtime song!Either way, I hope we see more and more of those days. It was really great to see him so happy and comfortable. I don't know what brought it out, but it was great!

The doctors did not want to increase his melatonin even though it's still a 50/50 shot as to whether he'll go to sleep easily at night. I do have to say it's getting better and better, so hopefully we'll just continue to improve. He's extremely sensitive to his pre-sleep schedule, so I know that usually as long as we keep that perfectly he should do well. It gets hard especially in the summer since Callie has activities in the evening and that would completely mess up his schedule. He's supposed to sit in a darkened area with no stimuli - no TV, no movies, no electronics whatsoever. He basically just colors at the kitchen table with the light off for at least an hour and a half before bed. I don't know how that will work in the midst of soccer practices and evening softball games - as well as the sun being up later at night! We'll see how things go.

Tomorrow I have a conference at Ethan's school. Hopefully I can hear that progress is being made and he's doing well. He brought home another "Shining Star" on Tuesday as well, so hopefully that means he's behaving himself and doing well in school. I know he's really doing well with his reading at home. He reads a story every night to me - either a "Bob" book or "Dick and Jane". He thinks they're hilarious and he's reading almost all the words by himself! He's making huge strides and I hope things continue to improve! :)

Ethan was invited to a birthday party for a boy in his class. Even though I tried to convince him that it would be fun to go, Ethan keeps insisting that he's going to be sick that day. I didn't want to push him into going and stress him out about the socialization, so hopefully he'll have another chance when he's older and maybe more comfortable in those settings. Callie finishes up her basketball season this weekend and has big plans for next weekend. I'll post about that when it's over! :)

We had a new baby cousin born into the family (Luke) this week. He is currently in NICU, but doing much better now. Please pray that he continues to improve and can go home very soon! :) Also we just found out that one of Ethan's heterotaxy friends is in the hospital with RSV. Please keep Vivi in your prayers that she feels better and can go home soon! Thanks for all your prayers and support!

Make a video - it's fun, easy and free!
www.onetruemedia.com

 

 

 

 



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.