School open houses and doctor appointments

Still working on catching up on summer/back to school! :) We'll start off with back to school open houses! The kids always love seeing their new classrooms and meeting their teachers. We had a lot of fun and the kids were happy. Callie is in sixth grade this year and Ethan is in first!

 

 

Callie is having a great year so far! She loves sixth grade, is doing extremely well in her classes (straight A's in the gifted program), and her teachers say she is a joy to have in class! Love going to her conferences! Ethan on the other hand...well things aren't quite the same. I receive either a phone call, email, or note home on a daily basis. His principal, interventionist, and teacher all know me on a first name basis since we talk so much! :( We are definitely not having the year I was hoping for. We have an IEP meeting scheduled for Monday, so hopefully we can all get together and figure out some way to help him succeed this year in school. I'll be able to update more on that after the meeting.

 

Working on homework

 

 

Ethan has also had a few doctor appointments recently and more to come. We went to the eye doctor to update his glasses prescription. We tried going to an optometrist since I really am not happy with his ophthalmologist during our last few appointments. The optometrist wasn't able to figure out his prescription (the best they could get him to was 20/50 vision) due to his severe astigmatism. Unfortunately, we have to go back to the ophthalmologist next week so we can update his glasses.

 

 

He also had his 7-year checkup at the pediatrician. The appointment went really well, even though he was highly upset that I made him wear a mask to go there. I was definitely nervous about being in there with any sick kids and all these crazy viruses going around! He apparently gained a couple pounds and grew a couple inches this past year leaving him around 25th percentile for both height and weight. His lungs sounded great still thankfully! We have had an amazing break for months now of clear lungs! We have never in his life gone this long between pneumonias and his "gunky" lung issues, so this has been pretty awesome! I pray it continues! :) He also got his flu shot that day so we're glad that's over with!

 

We also went to the Autism Center for our first evaluation last Wednesday. The appointment went well. We met with a few therapists and answered a ton of questions! Next week we return for another assessment. They'll observe Ethan at play, put stimulants that usually irritate him to see how he reacts, do a speech evaluation, and ask him more questions. It should be interesting. Then two weeks later John and I will return to hear their results and treatment plan. So far they've hinted at some diagnoses (one that I haven't even considered yet - and didn't want to), but I'm going to wait until I hear the actual results before sharing. Hopefully they can figure out what's wrong and we can come up with a great treatment plan to help him!

Ethan also had to do a Holter monitor to make sure his heart was handling the increase in his medication. Unfortunately, I have not received any results back. Hopefully that goes along with the whole "no news is good news" thing. He also had two nosebleeds in one week, so that obviously was a cause for concern since we had recently increased his Coumadin (blood thinners). We had to go in to the lab for a blood test to make sure his INR wasn't too high. Thankfully his numbers were good, so that was a big relief. Hopefully results will come in soon from his Holter and I'll let you know how it went.

YAY! All done!

Callie bridged in Girl Scouts last week as well. They had a lot of fun and she is now officially a Cadette!

This upcoming week we have a soccer game and then soccer tournament for Callie, Callie's running club races and award presentations, Ethan's eye appointment, Callie's 11-year doctor appointment, picking out new glasses for both of the kids, Ethan's IEP meeting, Autism Center, and foot golf for Callie with her soccer team. This is in addition to my work and school! It'll be a busy week for sure! Hopefully Ethan is able to have a good week at school so that can make things go much more smoothly! Callie has also had a cold for the past 2 weeks. I keep waiting for Ethan to get sick, but so far he hasn't shown any signs! Hopefully she gets over it soon without getting anyone else sick! It's very strange to have Callie sick instead of Ethan! She never gets sick!

I'll update again soon with some more catching up and more info on our appointments. :) Thanks for all the prayers and support!

It's been a while!

This post was started two weeks ago, but I wasn't able to complete it. I just added in some updates to let you all know what's been going on lately. Sorry for the lack of pictures. I'll make it up with the next post! :)

I can't believe how long it's been since I last updated! This is just going to be a quick medical post from this week. Then maybe I can do a few posts about our summer adventures - Callie's trip out West, our family trip to Kentucky, zoo fun, swimming, and birthday parties! Eek - there's a lot to catch up on! :)

Ethan had his 6-month neurology appointment. The appointment went really well. He has gained weight and grown taller! :) So pleased with that! His headaches have really improved this summer. In fact, he's down to having a headache only about once every week or two! At least that was until a couple weeks ago. He had a really bad week and a half where his headaches were daily - and one of them was so bad he just sat in the bathroom screaming and sobbing. He NEVER reacts like that, so that was definitely a concern! Thankfully the really bad ones are not too common. We can't be sure what the cause is for the increased headache activity, so I am thinking it might just be the weather messing with him. We decided not to increase his headache medicine dose for a little while. Hopefully they will go back to the way they've been all summer and we won't need to worry about increasing his meds again. He's already had a few days headache-free, so I think we might be back on track -- knock on wood! **update: He's still doing well headache-wise. He's having them about once a week again thankfully!

We also discussed his behavioral concerns and tics. Thankfully his mouth tic from last year has gone away - that was a really obvious and irritating one. He does twitch his nose all the time now and a new hand tic has developed this summer - and is getting worse over the past few weeks. This one is him basically regripping things constantly - and now he's starting to do the motion even when he's not holding something. He is definitely more distractible over the summer, but we decided we really didn't want to increase his Adderall dose until after school starts. I'm not sure if he's just not as focused because he's not on a strict routine like school anymore. Hopefully he'll be able to focus better once school begins, but if not I'm supposed to call in to neurology and they will increase his meds. Unfortunately, one of the side effects of his ADHD meds is the possibility for his tics to worsen, so hopefully we won't need to go up on the dose!  *Update: His tics have not worsened thankfully! In fact, they seem to have calmed down a little so hopefully that will continue to improve!

Dr. Friedman (neurologist) also gave us a referral for the Autism Clinic. We are waiting for them to call back and schedule his appointment. They will do an official evaluation to see where on the spectrum Ethan is, as well as letting us know what kind of therapies or help he may need. We also had our annual therapy assessment before the appointment. The therapist says that Ethan definitely needs both occupational and physical therapy. I will have to look back into where to go for therapy - our last place was nice but I didn't see much improvement with him. Ethan and Callie were their only peds patients for PT, so hopefully we can find a good pediatric practice near us that would be better.

All in all, the neurology appointment went well. We will take care of the other appointments and therapies, then we return in six months unless something comes up in the meantime.

Ethan had a cardiology appointment. We were supposed to have an echo done, but the office was running really behind and they decided to skip the echo today. He looked really great at the appointment anyway, so they didn't feel it was needed. In fact, Dr. G (cardiology) decided to change his every 3-month echos to every 6-months! Making progress! ;)

Ethan is doing surprisingly well! He had a great summer and was really healthy! He had a couple colds, but he actually was able to get over them on his own without antibiotics! No pneumonia all summer too - I think that's a first for us! :)

Today we set up our appointment plans. Every three months we will continue our appointments. Every six months we will do echos and blood work. We will continue to monitor his INR, do a full CBC, and continue checking his BNP - a test that basically shows how stressed his heart is. This number doubled in our last two tests (not good - the higher the number, the more stressed his heart is) so we definitely need to keep an eye on that.

*UPDATE:
We have been having a ton of school issues with Ethan unfortunately. Last year Ethan did really well. He was very quiet and struggled with focusing, but he behaved very well and ended up learning a lot. This year however is a completely different story. I receive notes or emails home from his teacher on a daily basis. He is very disruptive and apparently is repeating things. He repeats whatever the teacher says as well as what the other kids say. When she asks him to stop or be quiet, it only makes things worse and he becomes louder. She thinks that asking him to stop is worsening his anxiety/stress, so she tries to ignore it as much as possible. But obviously it's a very distracting thing to her and the other students, so something definitely needs to be done. They have removed him from class a couple times and sent him to his aide. Also letting him sit in the class library to look at books helps him calm down and be quiet. This is good, but we still need to figure out a way to get him to be calm with the rest of the class so everyone can learn! I emailed his neurologist about it this morning, so hopefully he will have some insight into something that might help. I also am still waiting on our Autism Clinic appointment, so hopefully I will hear from them very quickly and we can get some answers.

He also has been having a horrible time sleeping these past few weeks. His anxiety and meltdowns at bedtime have been through the roof, so I have been pretty tired lately! I don't know what's going on with him, but hopefully we can figure out a way to get him calm and happy again. It's been extremely frustrating and exhausting (mentally and physically) between his school and sleep struggles lately, so please keep us in your prayers. I hate that he's having such a hard time.

We ended up increasing his Adderall dose right after school began due to his behavior. Because of this we will have to do a Holter monitor and EKG next Monday. This med can affect heart rates, and since Ethan has a history with tachycardia and irregular heartbeats we have to be very diligent with his monitoring. We also are monitoring his weight since Adderall causes a lack of appetite. We fight to get every calorie in him as it is, so if he starts losing weight we'll have to increase his Periactin (headache medicine) to stimulate his appetite as well.

We have a very busy week coming up. Callie leaves for 6th grade camp on Wednesday! I can't believe it! I remember going to Mohican in sixth grade, so I am so excited for her. Even though it's a different camp for her, she is going to have a great time! We have soccer games, practices, running club, Girl Scouts, school band meeting, my school, work, and Ethan has 2 doctor appointments scheduled so far this week. We'll be busy, but hopefully it will be a very good week!

I am attaching pictures of the kids on the first day of school. I will do another post soon of their open houses with a lot more pictures! I also will work on catching up with pictures and info on all the fun things we've been up to!

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!

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