Finally an update!

I really can't believe it's been so long since my last post! This is going to be a recap of the past few months and photo dump. If you follow me on Facebook you've probably seen most of these pictures! :)

Things have been very calm and good up until the past couple of months. Ethan has been improving in school and is making friends! I'm very happy about that! His class had a field trip last week and I was able to go along as a chaperone. The kids had a great time and it was so good to watch Ethan interact with his friends.

He has been attending therapies every week. He has his anxiety counseling, speech therapy, physical therapy, and occupational therapy. He has been making improvements in all of his therapies, so that is a great thing to see his progression. He will be swapping some of his therapies this summer for special camps that are offered. We are looking to sign him up for a handwriting course and a social skills course that focuses on socialization, speech, sensory issues, and occupational therapy activities in a group setting. I think he can really benefit from these programs this summer!

John and I were able to go on a cruise with my parents and grandparents in February! It was so much fun and it felt amazing to be out of the cold and on the beach! :)

Another thing we participated in was attending Flying Horse Farms last month. It was so much fun and we all had a great time! This camp provides experiences for kids with special needs. They offer weekend family camps (which we attended)  as well as week long summer camps for different diseases (heart week, pulmonology week, cancer week, etc). Specialty doctors volunteer from various hospitals to stay at the camp to make sure the kids have exactly what they need to finally be able to experience camp! It's an amazing place and we are so happy to have discovered it!

 

 

He has been extremely tired these past six months, but overall his health has been good. He has been doing weekly INR blood tests for the past few months since his levels keep dropping. We are in a steady range right now though, so we don't have to return for 3 more weeks!
Then Ethan started having these weird episodes of hard breathing and fatigue. We haven't been able to figure out what triggers these episodes or what these actually are. He will just suddenly out of the blue start breathing really hard and it's basically like he's completely out of breath from just having run a race (even though he's been just sitting around and not exercising or anything). His sats drop to the 40s or 50s and he becomes even more tired than usual. It's extremely concerning to us obviously and we first assumed it was his heart having problems. We contacted our cardiologist and rushed in to have an appointment. He did not have an episode at the appointment and everything looked good, so we kind of were back at square one but feeling a bit better that his heart didn't show more problems. He continued to have these episodes but would recover within around 5 minutes each time, so we just continued on with our normal activities.
Last Friday he had one of these episodes at school and scared the staff! They said he was sitting in class and just started doing his hard breathing, then put his head down on his desk and went to sleep. That evening his sats ranged from 46-53%, so he was put on oxygen. He said he felt better on the oxygen, so he requested to keep it on. Saturday morning his sats were back in the low-mid 50s without oxygen, so back on it went. Saturday afternoon/evening he was doing well without the oxygen and was back up in the 70s. Then Sunday evening his sats dropped again and he wanted oxygen back on. It is weird that he wants it, because he has fought oxygen throughout his entire life! It's very strange to hear him ask for it throughout the day! I guess it really shows how crummy he feels without it, but I'm very glad he realizes that it does make him feel better to have it on!
Because he had such a rough weekend we went to the pediatrician yesterday to see if maybe he had something going on with his lungs. Surprisingly his lungs were still clear! The doctor was not sure what is causing these episodes, but she does have a couple possibilities. The first and best one would be allergies triggering minor asthma attacks. That is what we are going to test out first. We increased the dosage on one of his inhalers and we will see if that helps decrease the episodes this week.
I let Ethan's cardiologist know that things haven't improved, and I also told him what we were doing with the pediatrician. He let me know that he will discuss things with our other cardiologist, but it looks like we need to move forward with the heart catheterization to check out his pulmonary arteries. At our appointment last month (when we rushed in because of these episodes) we weren't able to see his pulmonary artery. We don't know if it's because of the location (it's very hard to see this in him because of his anatomy and the location of it) or if it's completely blocked off and has no blood flow again. The heart cath will check things out and see if we can figure out what's going on in there. This is a very nerve-wracking thing because this will be the first cath ever that will be done by someone other than Dr. G. He has been the only cath doc since Ethan was born, but stopped doing caths this past year unfortunately. I'm definitely nervous about this, but I know Dr. G wouldn't let someone he didn't feel totally comfortable with work on Ethan!
So basically, we're just waiting to see if Ethan's med changes help him out and decrease the frequency of these episodes. We should also hear back from cardiology soon to find out when they want to move forward with the cath.

 

 

Other than this stuff, we've been keeping busy with the end of school activities and spring sports! Callie is constantly at either softball, band, soccer, or church group. She had her Honor Choir concert last month and just had her final spring band concert last night. Field day at school for both kids happens in the next two weeks. Then school is over! I can't believe it's already time for summer vacation!! AAHHH!!! The kids are thrilled to say the least! :)

 

 

Please keep us in your prayers as we try to get to the bottom of Ethan's breathing issues. Hopefully it's nothing serious and he can start feeling better. Please also pray that his overall oxygen sats improve along with his fatigue. It's hard to watch him go out to play and only be able to do a minor activity for a couple minutes before having to stop and rest. We certainly don't want to become completely dependent on his oxygen, so hopefully he'll start feeling better with his breathing very soon! I'll post again once we get a plan figured out with cardiology and as well as seeing if his med change helps things. Thanks!

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!