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!
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