First week of school!

The night before the first day of school, we decided to go out and have a little last minute fun. We hit a mini golf spot near our house. I was surprised at how well Ethan did! We might have a little golfer on our hands someday. :) At least that's a sport he'll be allowed to do! He was even able to pay attention and play the entire course -- something he never was able to do before his ADHD meds started!

The kids definitely enjoyed this hole!

School has started! Callie started 5th grade and Ethan started kindergarten! So far they are loving it!

We spent multiple meetings going over everything Ethan would need for a successful school year. I dropped off a bunch of necessary medical equipment for him - pulse ox monitor, oxygen, meds, etc. Hopefully he won't need it this year, but at least it's there just in case.

Since he's not allowed to participate in gym class this year, we had arranged for him to have speech therapy during one class and hopefully occupational therapy during the second. He's still going through the approval process for OT at the school, but that will hopefully only take a couple weeks. The school claimed they did not want Ethan to be excluded from gym entirely, so they wanted to see about figuring out a way for him to do some kind of gym class on the sidelines during the regular one. I don't know what they're talking about with that, but hopefully OT will come through quickly and he'll be preoccupied during gym class each week.

He's also not riding the school bus this year after all. He was supposed to, but the school district got a little too nervous with that idea. They were afraid that something would happen and the bus driver wouldn't have any help in taking care of him. They also worried since there's no oxygen or medical supplies on the regular bus. Instead, he has a school transportation van picking him up. He was pretty disappointed when we found that out, but it's going really well. The van pulls into our driveway so we don't even have to wait down by the street. And instead of an hour-long bus ride in the mornings, he only has to ride about 10 minutes! :) That's so much better!

I know they're being pretty conservative with him so far. He hasn't been outside for recess yet since it's been pretty warm here. Instead of going outside, he hangs out and colors in the school clinic. So far he is having fun and enjoying kindergarten, so that's such a blessing!

I know he was struggling a bit at lunchtime since he just is not outgoing enough. The first day of school Ethan brought his lunchbox home almost completely full. He was obviously hungry when he came home, so I asked him why he didn't eat at lunch. He said he couldn't open his food. I know there are lots of teachers and aides in the cafeteria that will help open snacks and stuff if he asked them. He just wouldn't ask, so instead he went hungry! I'm trying to give him as easy to open snacks as possible and still working on convincing him to get up and ask for help if he needs it! Hopefully he'll get used to it and do better!

Unfortunately, getting information out of him is difficult to say the least. I keep trying to convince him to tell me what he did each day, but I still have no idea what he's up to at school! LOL! I can't wait to talk to the teachers and find out how he's really doing!

Ethan received a package in the mail this past week. It was a "Heart Hero Cape" from Heart Heroes! It's a group that sends out hero capes to heart kids. Ethan loves it and was so excited when he opened the package! I need to get some better pictures of him in it, but at least you can see what it looks like.

As for the medical side of things, we've struggled a little bit this past week. Ethan has had multiple headaches since the night before school started. I don't know if it's stress, sleep, weather changes, or something else that's causing it. This weekend was pretty bad though. Friday after school Ethan complained about a headache. That night and two rounds of Tylenol later Ethan was still miserable. He kept saying his heart was hurting, but I think it was his stomach. The headache was so bad he couldn't sleep, was slightly feverish, couldn't get comfortable, and was nauseous. I'm wondering if it was a full-blown migraine for him. :( Hopefully the headaches calm down, but we'll definitely be discussing the new medicine at the cardiology appointment on the 11th. He's also doing terribly with his eating (he's lost almost 5 pounds this summer!) so maybe that medicine's side effects will be a major blessing for him! It apparently increases appetite and weight gain.

We have a pretty busy week coming up, so please keep us in your prayers - especially for Ethan to be healthy! I'll let you know how things progress with school and if anything happens before our next appointment.

Next update :) Sorry it's long!

Well here's the next update on our summer. We've been pretty busy this month with birthdays, summering, and doctor appointments!

First off, we got a pool! We've been really enjoying this, even though the weather has NOT been cooperating! I think we've had about one day of warmth and sunshine since we put it up! Oh well, at least it's heated. And maybe we'll get a few more days of good weather before school starts up!

Callie, Ethan, and I also had our birthdays this month! I can't believe Callie turned 10 and Ethan is now 6! They're just growing up so quickly! We were able to have family over to celebrate the kids' birthdays and we had a great time. :)

The kids also enjoyed their traditional birthday breakfasts. The night before their birthday they request the morning's meal. Then we just stick a candle in their breakfast and sing to them to start off the day right. :)

And another thing we did for birthday time was add to the family! Welcome to Fiona! She's our sweet little puppy - half English Bulldog and half Puggle. We all just love her and are so happy she's with us!

We also are in full gear getting ready for school to start up! I just can't believe Callie's going into 5th grade and Ethan's starting kindergarten! These will be such big years for them! We just got Callie's schedule and of course she got the teacher we were warned to avoid. Figures. She only has her for homeroom, science, and a language arts. The rest of her classes are switched around to various teachers, so hopefully she can just power through and make the best of the situation. I just pray that she does well and has a great year no matter who she gets! She has always done great at school and teachers love her. Hopefully that'll really help her with this year!

I've been trying to contact Ethan's school to update his IEP plan, create his 504 plan, and go over some regulations from the doctors. Unfortunately I can't seem to get in touch with anyone! I'm apparently going to have to really start hounding them a couple times a day starting Monday, because we have to get these things figured out before school starts!

Ethan also had some medical appointments recently. We went to the pulmonologist and got great news! He agreed with the pediatrician and said Ethan's lungs have never sounded this good! I'm so happy about this! We went over some of the lung scans again during the appointment. He mentioned that the atelectasis and bronchiectasis is actually in both the right and left lower lobes. We had thought previously it was just his left lower lobe. He brought up the lobectomy once again (surgically removing the lower lobes), but once again agreed that this would not really be safe due to all of his past surgeries, lung disease, and potential detriment to his body. I don't know why he keeps bringing that option up, but I really don't see us ever going down that road. He did mention about heart transplant though. He said he's working on ensuring the meds and treatments we're doing will help keep his lungs healthy enough to help make any future heart transplant successful.  I asked him what he thought about his lungs accepting a new heart. He said (and I'm not sure he's really the one to know this instead of the transplant committee) that he might not need a full heart/lung transplant in the end. These lungs might actually be able to handle a new heart! I think it's way too early to tell just yet, and I also think that's mainly going to be the decision of the transplant team. But of course it's always nice to hear a positive outlook. :)

We went to the Pediatric Sleep Disorder Clinic for Ethan's sleep struggles. The appointment went really well and I'm so happy with how things are going. They diagnosed Ethan with Delayed Sleep Phase Syndrome. This basically means that his internal body clock was really delayed and we have a lot of work to get him back into the right schedule. They sent us home with a bunch of schedules to follow, charts to fill out, and an order to start taking Melatonin. The schedule is strict, but it's going so well! We're already down to tonight's bedtime of 9:45! The goal is to have Ethan fall asleep at 9pm and wake up at 7am - all while sleeping through the night. I pray that this happens, and I'm so relieved that it's going well so far. He's only had about three nights where he's woken up in the middle of the night or struggled falling asleep. :)

We also saw neurology as a follow up to the ADHD appointment and his headaches. They did another assessment with Ethan and think he'll benefit from more therapy. They wrote up an order for him to start back with occupational therapy and additional speech therapy. Insurance denied the therapies, so now I am trying to change his insurance. Otherwise we'll just have to pay out of pocket for it.

We signed up to participate in a study the neurologist is doing on headaches in cardiac kids. He said we probably won't really see a benefit from this study, but hopefully it will help kids in the future. I mentioned that his headaches have improved over the summer. I was pretty happy about that fact. He let me know that it's very common for the kids to have less headaches in the summer. He said to expect it to really increase when school resumes. :(

Neurology called a few days ago wanting to start him on a prophylactic medication for the headaches. I have pretty mixed feelings about this. Apparently the negative side effects to this new medication is sleepiness and increased appetite leading to weight gain. Hmm...those actually sound pretty awesome for Ethan! But the thought of starting him on yet ANOTHER medication is such a struggle. He's currently taking 11 medications each day (6 of those are taken 2-3 times per day). Granted he's really great at taking meds, but I don't want to just keep adding drug after drug to him. I told them to hold off and wait until I talk to cardiology about it. They said to call any time and they will send the order for the meds right into the pharmacy. I spoke to cardiology about it and they're looking into it. They also want to double-check and make sure everything will be safe with all the other drugs he takes. I brought up the fact that we were hoping the stent in Ethan's narrowed SVC would help alleviate the headaches. Dr. Z (main cardiologist) doesn't think it will, but Dr. G (the cath doc) thought it would. I guess we'll see.

That brings us to cardiology. We have our next appointment September 11th. We'll have an echo and meeting with both Dr. Z and Dr. G to discuss the next step. I think it'll be placing the SVC stent since that's what was supposed to happen this past spring. I won't know for sure until the appointment though.

Please keep us in your prayers as things start getting even busier in the next couple of weeks. Callie's soccer season is about to start and that should be interesting to say the least. Her team was bumped up to the U12 league because not enough teams signed up for U10. She is on a REALLY young team and just lost 3 of the main offense players from last year. As replacements, we got 3 9-year-olds and an 11-year-old who has never played soccer before! Wow. Definitely going to be a rough season! I just can't picture tiny little Callie in the goal box against 12-year-olds! Eek! Well, we better get practicing!!!

I'll keep you all posted with our upcoming school start, sleep clinic/neurology next week, and cardiology news. Thanks for the prayers everyone!

Next update!

Here's the next random catch-up from summer. :)

First off, my cousin Brandon got married this summer! We are so happy for him and his wonderful new wife! The wedding was so much fun and everyone had a blast! We are keeping the newlyweds in our prayers as they start off their life together and deal with all the struggles and separations from him serving our country in the Marines.

My pictures from the wedding are horrible, but it's the best my phone would do.

John, Ethan, and Brandon waiting for the food :)

Family picture

Brandon and Nicole :)

the dance floor - the DJ was amazing, so everybody was out dancing and having fun!

We've also spent time cooling off from this heat at the lake and some local shooting fountains!

The kids at the lake

Ethan playing in the sand

Callie playing in the sand

Callie and Ethan at the shooting fountains

Ethan still gets his headaches. :( He had one at the park and had to lay down to try and feel better.

Yesterday we had Ethan's pneumonia recheck with the pediatrician. I went in hoping for good news but bracing for more of the same. The past two rechecks showed no improvement in his lungs. Yesterday, the doctor listened to his lungs and said she's never heard them this clear! There wasn't a single crackle and his left lung seemed open! I was so thrilled I could've cried! We picked up his x-ray results from radiology after the appointment and headed out to celebrate!

The kids after eating ice cream at Hastee Tastee. We stopped here after eating at Hot Dog Heaven. I used to go to these places all the time when I lived in this city, so now it's such a treat on the occasions we can make it there!

Ethan's cardiologist wants us to schedule his next appointment for early August. That way both of the cardiologists can meet with us and figure out the next step. I'll call tomorrow and schedule that appointment.

We also discussed Ethan's lack of sleep. We've been struggling with sleep his entire life, but this past year has gotten pretty out of control. I put him to bed around 9pm. We go through the whole bedtime routine (book, song, prayers, kisses). Unfortunately he doesn't actually fall asleep until somewhere between 2 and 4 in the morning. Usually that's after coming downstairs with excuse after excuse and being put back to bed multiple times. Then he'll finally break me around 3 in the morning and sleep on the floor of my room. It's not AS bad in the summer since he doesn't have to wake up at the crack of dawn, but I still get him up between 8:30-9am to try and tire him out for the next night. It never works, but I have to at least try. I just know this can't continue when school starts back up. He certainly can't make it through a day of school after only having had 3-4 hours of sleep!

Either way, we got a referral for a sleep specialist. This is at the neurology office he goes to for his ADHD. Hopefully we can be seen soon and get something figured out to help him! I hope to hear back from neurology with an appointment date in the next day or two.

Last but not least, today one of our heart friends that we follow online got his new heart! He is the same age as Ethan and just was admitted inpatient waiting for his new heart a month ago. Thankfully a new heart came quickly for him and we pray that his recovery goes extremely well and his body accepts the new heart! Ethan watched the video of him getting the news that his new heart was on the way. I explained to Ethan that this new heart would make Owen (our heart friend) feel better. Ethan then asked me "When can I get a new heart? I'm tired of being sick too." He broke my heart with that comment, but hopefully we can figure out a way to make him really start feeling good.

Please continue to keep us in your prayers. I'll keep you updated with our activities and upcoming appointments.

Kentucky & some medical stuff

Well, I guess it’s time for me to start doing some random posts about the things we’ve been up to lately! These will all be out of order, but I will try and get caught up! Today’s post will be about our recent trip to visit family in Kentucky for the 4^th of July.

We had a really great trip visiting John’s family. The kids always especially love spending time with all their cousins down there! The kids have 8 cousins there all around their age! This time we were lucky enough to be able to spend an entire week! The weather was pretty awful, but thankfully we were able to still have a great trip.

Callie, Ethan, and cousin Wesley watching a movie

 

We have a new fireworks business (Midnight Madness). This year was the first for it and we only sold there in Kentucky (hence the reason for the trip). Callie loves that John is involved in this! She loves fireworks and had a blast all week lighting things off! Ethan on the other hand hates the noise of fireworks (surprise surprise). But thankfully the gun headphones did a great job and he was finally able to enjoy the shows and playing around with all the fun stuff! He especially loves the lanterns! He would get so excited every time we went to light one off!

lighting off Ethan's heart lantern

some of the fireworks for sale

 

We also had a big celebration with their church. There was a ton of great food, fun people to visit with, and inflatables for the kids. We topped it off with a great fireworks show (put on by Midnight Madness of course)! J

Ethan resting in the bounce house

Callie with some cousins and friends

Ethan, Callie, and Wesley waiting for the fireworks

Ethan and Callie with sparklers

 

Near the end of our visit, a tiny kitten strolled its way up to a bonfire we were at. The neighbor threatened to kill it if it was still on his property in the morning. We noticed it had something wrong with its eye, so we left it outside to hopefully go back to where it came from. By morning though, the kitten was still hanging around. We didn’t want anything tragic to happen to it (*cough* the neighbor), so we decided to take it. By morning his eye was looking pretty rough, so we scheduled an emergency trip to the local vet and took him in. The vet checked him out, prescribed some antibiotics, and sent us on our way. He was severely malnourished (weighed only 1 pound!), had an eye infection, and upper respiratory infection. We loved him and cared for him the best that we could, but unfortunately about 2 miles into our trip back home poor little Dorito died. L Callie was devastated. Ethan was mainly upset that we didn’t show him the dead cat before throwing him out. We had to go retrieve Dorito in his box to show Ethan the body. He's under the impression that Dorito will be reunited with "Blue Puppy" (the stuffed dog he accidentally left at a doctor office and they threw away). Ethan's happy that Dorito and Blue Puppy will be at the dump together. Weird. Very weird. Needless to say, we are now being bombarded with requests for a new pet. *sigh* Well, birthdays are fast approaching…

Callie and Dorito

Ethan and Dorito

 

We had a safe trip back home and are somewhat back in our routine.

Onto the medical stuff.

Ethan still has pneumonia. He’s doing amazingly well with it – I can’t believe how “normal” he is even with his lungs the way they are. He’s still doing all the same things he normally does. Granted, a majority of his time is spent sitting playing legos or coloring so that helps! We have a recheck for his pneumonia on Tuesday. After that we’ll return to cardiology to figure out the next step. They are waiting for his lung xrays to see what’s going on. Obviously, we can’t really move forward with another heart procedure until his lungs are clear. Hopefully the doctor will find that they’ve improved at this next appointment! On August 1^st we go to pulmonology to see if they can come up with a new idea to help his lungs. The pediatrician is discouraged that all the steroids, antibiotics, and breathing treatments aren’t working.

His neuropsychology results came in the mail yesterday. They were disheartening. Apparently Ethan didn’t cooperate as well as I had hoped – even though I did kind of expect it. This affected his scores. We’ll end up having to retest later when he can pay attention a bit more. He just still wouldn’t focus and pay attention well enough to get accurate readings. They noted that this will be a major problem in school. I’ll have to schedule another meeting with his school to go over this and finish up plans for kindergarten. Basically, I’m thinking we’ll probably go with the original plan for attending this kindergarten. If he’s struggling too much or having problems, then we’ll decide if we need to switch to a Goddard school or something with more one-on-one, hands-on types of teaching methods. The test results say he’ll need frequent breaks, limited distractions, and mastery of each skill before moving onto the next to avoid frustration. His language is also a huge barrier (and was during the testing). Ethan gets extremely frustrated when asked to repeat himself. I guess he’s just sick of constantly trying to get his words right and nobody understanding him. L After one or two times trying to repeat himself, he’ll just give up and say “Never mind!” I have a feeling that we’re going to have to attend additional speech therapy outside of his school. I’m not sure what they’re providing will be enough for him. Hopefully I’m wrong, but we’ll see. They also warned that he's at risk for depression and anxiety. He definitely has a lot of anxiety, but hopefully that's something that we can work out easily. :/  

I also had a procedure done in the middle of June. I found out I had something called May-Thurners disease. My left iliac vein was severely compressed by an artery in my pelvis. It’s apparently what has been causing my blood clots for the past ten years! I’m so glad we’ve finally figured it out! I had two stents placed in my iliac vein to open up blood flow. I can already tell a difference in my leg! The healing went a lot slower than I expected. I don’t know how Ethan does this! I had major bruising and swelling in my groin for 3 weeks! I also had a lot of pain for the first 1.5-2 weeks that I didn’t expect. Ethan’s up playing normally the next day after his caths, so I definitely didn’t expect mine to be any different. Boy, was I wrong. That boy is tough! Thankfully I’m doing SO much better now. I’m back to my normal routine and my bruising is almost completely gone now! I have six months of blood thinners to take, then I should be done with those for life!

Me recovering from the cath

 

That’s enough for now! Please keep us in your prayers. There will be a lot of appointments coming up soon that need to go well. I know we were supposed to have his cath this past spring and open heart in the winter, but now I’m not exactly sure what the plan is. I should find all that out at our next cardio appointment soon. I also will be playing catch up more, so another post with our summer outings will be coming soon! :) 

new meds

All right...finally an update!
Two days after our neurology appointment electrophysiology called to schedule a holter monitor. We got right in thankfully and did a 24-hour monitor. Ethan did great for it even while having to wear it to school.

Stickers always wreak havoc on Ethan's skin. Thankfully these healed up within 2 days :)

The weather was really great so Ethan was able to play outside, exert himself a bit, and do his normal routine so the doctors could see how his heart handles his daily activities. We got the call on Friday saying that the results look good! Apparently his heart rate is strong and even - thankfully! We've had so many rhythm issues with him throughout his life that I was pretty nervous about these results! He's already on two medications for it, so I didn't know what to really expect if the results came back bad! So relieved we don't have to worry about that now! :)

You can see the holter monitor pouch sticking out beneath his sweatshirt

Friday afternoon we got the call from the doctors saying that Ethan could start Adderall. *shudder* I went downtown to pick up his prescription since they couldn't call it into the pharmacy due to it being a controlled substance. I made sure to pick it up Friday so he could take it over the weekend and I could observe him. I didn't want to give him a pill Monday morning and send him off to school. There are a bunch of potential side effects (heart rhythm issues, racing heart, etc) that I wanted to watch for. Saturday he handled it pretty well! No heart issues as far as we could tell, but he did have some of the smaller side effects. His appetite was terrible (anorexic effects are a problem with this drug) and he had the "come-down effect" they warned us about. It's just him getting extremely whiny and cranky late afternoon as the drug wears off. He also DID NOT SLEEP! They said this could cause sleep issues, but wow he didn't go to bed until 3:30am and then was awake for the day at 7:30! I couldn't believe it!
Today went so much better. His appetite was still definitely decreased, but he ate a pretty decent dinner later in the day. Maybe we'll just have to give him lots of food at night when the meds wear off. Heart kids definitely can't lose weight! We also didn't really notice much of the "coming down" effect like yesterday, so hopefully that won't be a problem. If it is a problem, he'll need another med to take in the afternoon to counteract it. I definitely don't want to go that route! I pray that tonight he goes to sleep - he's still wide awake now at 10pm.
Tomorrow he returns to school. I'm going to ask the teachers to let me know if the meds are improving things or not. Their report this week will help determine if he needs a dose change or a different med. I pray that this really helps him and he can finally relax enough to pay attention and participate in school!

My parents recently went to New Orleans and brought the kids back some masks. They loved them!

Ethan is also dealing with a MAJOR case of separation anxiety. It started a few weeks ago and hasn't improved at all. :( Don't know what started it, but it definitely needs to stop! I can't leave him at all! Every time I try to run to the store, drop him off at someone's house, etc he goes into panic mode. It's just screaming and crying terribly - and I have to actually pry him off of me! I end up having to take him everywhere almost all the time! We even had to resort to watching church online (which we do whenever he's sick anyway) because he wouldn't handle going into his Sunday school classroom. *sigh* I pray that this ends quickly because it's driving me nuts! :)

On a happier note, we had a kindergarten open house last week! Ethan was able to tour the school, see some kindergarten classrooms, and meet some teachers. He of course wasn't social with anyone - even though a little boy tried to chat with him and be his friend. He really needs to figure out how to communicate with other people or else he's going to be in trouble next year trying to make new friends! Hopefully he'll continue to improve with his speech and that'll give him the confidence to hold a conversation with his peers. He is looking forward to kindergarten, so that's so good!

The kids have also been enjoying playing with the dog and going to the park in the warm weather we had yesterday!

Ethan was pretending to be a "lifeguard dog" - which is apparently a police dog. He was very excited to see one on TV when we were watching the news about Boston, so now that's what he wants to be! I told him maybe he can be a policeman and own a police dog, but actually being the police dog is going to be difficult... :)

Callie riding Moose

And for the park:

Please keep Ethan in your prayers that this medicine helps him out and has none of the side effects. Please also pray that his sleeping and separation anxiety issues go away!

Also please keep a fellow heart family in your prayers. I usually don't post about other heart kids, but we've been following him for a long time since he has heterotaxy just like Ethan. Sadly, little Ryker earned his angel wings a couple days ago. Please keep his family in your prayers!

I'll keep you all posted with how Ethan handles his meds this week and any new news :)