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! :)