We got a date!

Well, this is to catch you up on what we've been up to lately. :)

Callie's been pretty busy. She had an outing with her Girl Scout troop to Build a Bear. The girls had so much fun! They made special "Thin Mint" bears. After the bears, the girls went over to jump on the trampoline.

Callie is in the back center with the glasses.

Callie has had two of her four doctor appointments these past two weeks. Her 10-year checkup went very well. She is healthy and doing well. She then saw the endocrinologist. She did blood work and xrays. The xrays checked her bone age and that looked appropriate. Her labs checked a bunch of different levels, and most were right in range. The only low one is her growth hormone levels. That is most likely contributing to her shortness. So far it's not low enough to be a big concern, so we'll just keep monitoring it to make sure nothing gets worse. We return in four months to check her growth and more blood work. In the next two weeks she has another appointment at rheumatology and orthodontist. The rheumatologist will be checking the progress on her spine stiffness  (no improvement). Unfortunately, Callie is NOT good at taking her meds and doing her stretches. She has been doing stretches, but I think she totally cheats to make them easier!

Fiona has also been keeping us busy. Just not in the best ways usually...
She now has both of her eyes with "cherry eye". Thankfully we just got a referral today from Ethan's bus driver of a vet that does laser correction of this for much less than we were quoted for the original eye surgery!

She's still up to her usual troublemaking.
There was no denying who got into the garbage:

She's using her evilness to frame others now! I heard her rustling around in my closet the other day. I yelled at her from the other room to knock it off. When I went to check on what was going on, I found this. Poor Moose was just sleeping and minding his own business. Fiona dragged chewed up high heels and placed it right on top of innocent little Moose! She also strategically placed my boot and another shoe behind him. I couldn't believe it! Poor poor Moose.

I took her along to run some errands with me. Apparently she was a little carsick that day. I just about died when I saw what she did to my car! :( Thank goodness we have leather seats!!

My sister was able to come and visit this past weekend! We were so happy to see her! She came over and cooked our family dinner - and taught Callie a whole new recipe! She had a lot of fun. :)

Callie also had her very first school dance! It was a costume dance for Halloween, so Callie and some of her friends did a group theme. She went as a scarecrow, another friend was a farmer, and a few more were farm animals. I couldn't find a scarecrow costume, so at the last minute we had to improvise and make this one. It worked out well and she liked it. :)

Now onto Ethan.

Ethan's school nurse called a couple days ago. She said he failed his eye exam at school. His vision during that test was 20/40 with his glasses on. His prescription is only from June of this year, so hopefully his eyes haven't changed in this short of a time period! She's going to send home the printed results, and we'll be able to take that into his eye doctor and see if they need to change anything.

He also has his very first wiggly tooth! He's very excited about it! At first he was pretty stressed out about it, but now he's happy and can't wait for it to come out. :)

We had his IEP meeting at school last week. He is improving, so they are happy so far. He is being more cooperative with his school work so that's a big relief! He's also doing better in speech therapy. Instead of spending his classes asking when they were going to be done, he now answers her questions and request to play the computer games she has. She was very happy with his progress so far. :) The teachers claim that they love working with him and he really cracks them up. Unfortunately a lot of it is for his brutal honesty. A school worker asked him a question on a very anti-social day he was having. He grunted at her instead of talking. She asked him if she was annoying him. Of course his response was "yes". *sigh* Even though we still struggle tremendously with his socialization, he really loves the idea of "sharing time" at school. I was shocked at this, but he's constantly asking me to print off pictures for him to take to show his classmates! :) Love that! His interventional specialists are also working with him to help him reach some goals. We went over the goals for the year and hopefully we will meet and exceed them! I have parent-teacher conferences in another week for him. I'm looking forward to seeing what his teacher has to say...

We are still dealing with an on and off cough. Right now it seems to be returning, but hopefully it can clear up before his upcoming procedures!

He is doing much better with his headaches thankfully. He can sometimes go about 3-4 days without a headache now! Unfortunately yesterday and today he had rough ones. Hopefully he can get a break from them again.

We've also been struggling tremendously with his sleep lately! For the past week it's like Ethan's back to square one! :( He's back sleeping on my bedroom floor and really struggling to fall asleep for some reason. We had a couple days of being a little off schedule, but certainly I didn't think it was anything to throw him off track this badly! It'll be a pain, but we'll have to work on getting back to sleeping well again.

I received an email from Dr. Golden (cath doc) this morning. He set the date for the heart cath. It's Thursday, November 21st. They want to do a CT scan before the cath, so they will call me to schedule that. Hopefully we can do it without sedation this time. His past chest CT wound up with him completely panicking in the machine. We needed multiple sedatives to calm him for the scan. Now every time he hears about/sees the "donut" machine, he just starts to panic. However, when he hit his eye he needed a CT of his brain. He tolerated that without sedation and only mild panic, but they let me hold his hand and calm him the entire scan. We'll see how they want to do this chest one! Hopefully it goes much smoother this time. Unfortunately, this cath date is right before family arrives for Thanksgiving. I only pray that it goes extremely well and we are out quickly before the holidays!

I think that should be about it for now! I'll keep you all posted with the info once I find more out about the cath. I know they plan on looking at his conduit function and his pulmonary veins in the CT. These results will really determine what's going to happen during the cath. I'll let you know things once I find them out! :)

quick update

Things are going pretty well. :)

Ethan went to the pediatrician last week for his lung recheck. She listened and said he sounds so much better than last time! The antibiotics really cleared up the gunk he had! But he's apparently wheezing really bad still. We did a breathing treatment in the office and she said his wheezing went away almost completely. So at least we know his Xopenex treatments are working. But about a half hour after each treatment his wheeze completely returns. That's what we've been dealing with at home too. She decided to add Flovent to his breathing regimen hoping that it will keep his lung irritation down longer.

Ethan doing a treatment at the doctor

I also brought up the fact that he keeps doing this hard blinking. It's been going on for a couple weeks and getting worse. I thought it was due to his headaches or some weird facial tic he developed, but she said it's allergies. His eyes are apparently really irritated, so now we have allergy eye drops to help with that. So far I've noticed an improvement, so hopefully they'll make him feel a lot better!

His headaches are a little better but not completely gone yet. He dropped from 4-5 headaches a week down to about 3 a week. We met with neurology last week as well and they said we can increase his Periactin (headache med) dose at the beginning of this week. I'm going to call in today to see what we should go up to. We think his ADHD meds are working well and we can just continue on the dose that he has. We also were supposed to meet with the geneticist, but they weren't available the day we went in. At our next appointment in December we will have genetic testing done on Ethan. This will mainly make sure that he doesn't have anything that we've missed.

I got an email from cardiology yesterday about Ethan's upcoming cath. They said that we probably won't get in to do this until November. They only have one full day OR opening for the next few months, and Ethan can't share a day with someone else since his caths last so long. Just as long as it doesn't interfere with Thanksgiving that'll be fine! :) We're also still waiting on the compassionate care approval to use the covered stent in his conduit. That hasn't been approved yet, so we wouldn't be able to do anything anyway. I brought up my concerns again about the bleeding issues we had from the larger size last time. We almost had to stitch his neck access closed, which would leave us with only transhepatic (through his liver) access for all his future caths. We definitely don't want this, so we just have to pray extra hard that there are no bleeding issues this time!

Ethan's sleeping is still around the same. He had a rough last week (couldn't go to sleep for 4 days for some reason). But thankfully with being glued to the sleep schedule and me scratching him until my arms about fall off, he's been falling asleep better again. He still can't make it through the night yet, but at least he's back on track with going to sleep!

His appetite is also showing signs of improvement! Up until this past week we haven't seen any improvement at all. But the past 4-5 days he's eating breakfast and some dinner! I don't know what he's doing for lunch at school, but he at least claims to be eating there. I'll find out for sure at his IEP meeting on the 22nd. He has been struggling with some belly aches and diarrhea this past week, but hopefully it'll pass quickly. At least it doesn't seem to be bad enough to stop the food! :)

Basically, things are going really well right now. Everyone is pretty healthy and we're just waiting to see when the next procedure will be. Hopefully I'll get a date nailed down soon. I like being able to plan... I'll let you all know once I find out some things. Callie has a bunch of doctor appointments coming up over the next couple of weeks, so we'll be busy with her for a little while. Also we're finishing up soccer season in these next two weeks, working on her science fair project, and girl scout outings. She has a busy October!

blurry pic of Callie and Fiona

Fiona is so chunky now!!

This would be the reason for the chunkiness! She is constantly eating - even climbing up on kitchen counters to find the cat food and steal it!

soccer picture (she's bottom middle in the team picture)

Please keep us in your prayers and I'll let you know details once I get them!