Cardiology

Here's a quick update on Ethan's cardiology appointment this past week.

We started off the week with a blood draw to check Ethan's INR. It came back at 2.1, so that is perfect for us. No Coumadin adjustments needed! :) Now we have another month until that needs to be rechecked.

Wednesday we headed downtown for a cardiology checkup. The appointment went extremely well! Ethan had an echo, and we even had a resident doing his this time. He was still learning and Ethan was his first complex case. LOL it was interesting to watch him try and navigate Ethan's anatomy! He's definitely not an easy echo for trained techs much less a new one! :) The woman training him was very helpful and he did a great job. Overall, his heart looks good (for him)! No bad changes or anything alarming, so we're so happy about that!

We did another round of labwork at this appointment. Wednesday's INR test came back at 1.7. That was a little unusual to change in just 2 days, but still it's close enough to where we want it so we're not concerned. Another test we ran was his BNP. This test measures his level of heart failure. We've decided to start monitoring it a bit more closely since his levels have been changing recently. A normal healthy person's test would be below 100. Basically the higher the number, the more stressed out the heart is. Two tests ago his results were 870. Last test showed his number was around 1400! We definitely didn't like that big increase, so needless to say I was very nervous to find out his current BNP. But...the results came back at 675!! I couldn't believe it! I actually wondered if the blood work was switched with someone else, but I'm so thrilled! LOL! Ethan's oxygen sats have been steady in the upper 60s to mid 70s, so we're definitely happy with that still. And another amazing thing...Ethan has gained 5 pounds since August!! WoW! I am pretty much contributing it to the fact that he's off his Adderall (it decreases appetite) but he's still taking his Periactin (headache medicine that has a side effect of appetite stimulation). It's very exciting to see him actually putting on some weight! :)

We return in 3 months for our next exam. Basically, the plan is to watch and wait for his heart to show us he's ready for surgery. Once his oxygen sats go back to the lower 60s and/or his bloodwork starting showing more heart stress we'll take the next step. The next step will be a pre-surgery cath, and then open heart surgery to replace his conduit. So far everything looks good, so hopefully we can wait a while until surgery! :)

We've also started his therapy for anxiety. Hopefully we start to see some improvements and he can learn some better coping skills. We are also starting up his new physical therapy early December. We are trying to do occupational and his extra speech therapies at the same location, but they're not sure how long it will take to get us in the schedule.

School is still a big struggle, but we're having some breakthrough good days showing up. Ethan started his medicine a little over 2 weeks ago, and we just did his third and hopefully final increase in dose yesterday. We saw a little improvement in his tics this past week, so hopefully this next increase will really help out. At least Ethan has mastered his meds. He can take all his pills in one handful! I'm pretty impressed with his skill! :) These are his nighttime meds, not including the liquid med.

I'll keep you all updated as things progress. Please keep our heart buddy, Micah, in your prayers. He's currently inpatient (and has been for over a month) waiting for a heart. He can definitely use your prayers, as well as some other friends who are recovering from transplants and surgeries. :)

Beads, Halloween, more appointments, and some answers

I finally have some updates with Ethan's Autism Center evaluations. Ethan returned for his second round of testing and then two weeks later I went in for the results meeting. They actually do NOT believe he has autism! He definitely has autistic tendencies, but they believe his severe anxiety is manifesting as that. That was a huge relief! However, Even though that diagnosis was ruled out, we still had to go over what they believe is the cause for his behavior and tics. They confirmed the theory of severe anxiety - especially in social situations. This is why they think he doesn't interact with his peers. Another diagnosis they had is one I hadn't thought of before. Apparently, Ethan has Tourette's syndrome. This is the cause for his motor tics as well as the vocal tics that he displays in the classroom. Anxiety and stress increase his tics, so that only makes being in school that much worse. The diagnosis cannot be made official until one year after the start of his tics. We really noticed a major increase in tics at the end of Kindergarten, so the diagnosis will be official near the end of this school year.

Due to these new findings, med changes and plans had to be discussed. We are starting therapy for him to try and help ease his anxiety, improve his social skills, and figure out better coping mechanisms when he's stressed. Unfortunately the great anxiety and social group therapy we were referred to has a wait list over a year long! In the meantime, we just found another therapist to hopefully help him out until we can get in at the other center. We went to his first therapy session today. We're still feeling it out, but hopefully they'll be able to help him and he'll be able to benefit from this!

We also took him off his Adderall for his ADHD. We have switched him to Intuniv. This new medicine should help his ADHD as well as help decrease his tics. Hopefully it works well for him! It also is a blood pressure medication and has the potential to interact with two of the heart meds that he is currently taking. We did get clearance from cardiology and electrophysiology, but we have to monitor his blood pressure twice a week to make sure he stays in the safe range. So far I haven't noticed an improvement, but we are still on the lowest dose. We obviously don't want to go up too much as that will be more risk for negative side effects. Hopefully he'll start responding positively to this med and we see improvement soon!

I'm still working on getting Ethan in at a pediatric center for his physical, occupational, and speech therapies. It was recommended that he has additional help in all of those areas outside of what school is able to provide. I am going to see if it's possible to schedule all of the therapies in one day each week and just let Ethan miss school for it. That would be easier than having a different appointment after school every day! It's never easy trying to get him to therapy and appointments while Callie is trying to get to all of her after school activities too!

We have an upcoming blood draw to check his INR levels. That will happen probably this afternoon. We also are going in to get new glasses for the kids. I know it's been a couple weeks since their eye appointments, so I really need to get those new glasses for them! Then we have cardiology and an echo on Nov 19th. Please keep praying that the appointment shows his heart function is great and we don't have to discuss surgery yet!

In happier news, the kids had a great time trick-or-treating this year! Callie's friend's mom made her daughter a costume (neon cow) but it was too small for her. So they offered it to Callie! She wore it to the school fall costume dance as well as trick-or-treating and had a great time! Ethan wanted to be a cop again, so we didn't even have to buy him a new costume! LOL - the kids made it really easy this year! We did have to order a prisoner costume for Fiona, and that made Ethan happy! It took Ethan all the way to the end of trick-or-treating before he would say "trick or treat" to people. He just went up with Callie to the doors and stuck out his bag for them. :( At least he relaxed a bit near the end, and they ended up with a ton of candy!

 

 

Of course we also enjoyed carving pumpkins, roasting seeds, and watching Halloween movies!

 



Another great thing I wanted to let you know about is the Beads of Courage program! I'm not sure if I've discussed this on the blog or not, so just in case here it is. This is a program that sends kids a special bead for each medical procedure they endure. If their hospital is involved in the program, they receive their beads immediately from them. If not (like ours so far) we send in a form that lists each procedure he's done during a certain time period, then they mail him the beads he's earned. He gets so excited for his beads and loves to look through them! I'm so happy he's involved in this! Here are some pictures of him stringing his beads and displaying them. We can take them to the hospital for each stay and it can remind him of how strong he is and what he can earn for each ordeal! Since these pics he has earned about 20 more beads, but you can get the idea of what his string looks like! :) So far he is on his 7th string and has earned over 2500 beads! He has many "100 beads" that symbolize 100 treatments in a large bead instead of having so many smaller ones. Each bead symbolizes something different (i.e. yellow beads represent inpatient hospital stays (we do one each admission, black beads are for blood draws, glow in the dark beads are for echos, and there are special beads for caths, surgeries, et cetera). He's very proud of all of his beads, so I'm so glad this program makes him happy about his medical stuff!

Callie just got her ears pierced so she is thrilled as well! She's been asking for a very long time, but I've been putting it off for as long as possible. She had them done when she was 6, lost the earring back multiple times, and we had to re-poke her ears twice. I didn't want to go through that mess again. So we decided to wait until she was definitely old enough and responsible enough to check her ears often to make sure everything is there! Then with all her sports, things kept getting delayed. Needless to say, she was surprised and so happy that we went yesterday! She picked out the Make a Wish star earrings. They donate money to Make a Wish for getting that pair, so Callie was very happy about that!

Report cards came in last Friday as well for both kids. Callie earned straight A's and has many positive comments from her teachers! She's doing so great and I'm so proud of her! Ethan also got straight A's! I was very happy about that and honestly a bit surprised though I monitor their grades online regularly, so I knew they were doing well. He's also doing very well and meeting a lot of the IEP goals already. I'm so happy about that, and I hope he continues to improve and starts really enjoying school!

Callie also finally got her 6th grade school pictures!

We also let Ethan pick a restaurant to celebrate an entire week of being in the good behavior section of the behavior chart at school a few weeks ago. He chose Applebee's and then a movie, so here we are enjoying that. :)

Basically, our plan for the next few weeks is to work on Ethan's meds, therapies, doctor, and school. Callie is also busy with school, girl scouts, band, choir, and the start of basketball. I obviously have work and only one month left of my class (I can't wait to be done with this one!). Then it's time for Thanksgiving and preparations for Christmas! John's also very busy with finishing up fall landscaping and preparing for snow! I can't believe how quickly this year is going by!

Here are Moose and Fiona enjoying the weather before it gets too cold!

Please keep us in your prayers to stay healthy and have good news at upcoming appointments. I'll keep you posted!

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!