Journey's Ocular Shell

Did I ever get around to mentioning that Journey had an eye procedure under anesthesia in May? Her ophthalmologist (and yes, I can spell that now without looking it up!) wanted to get a more in depth look at her eyes, which isn't possible to do with a toddler who is awake. He also had an ocular prosthetic specialist come in and fit her for an ocular shell. This one is clear, and does a few different things:

-It acts as a place holder in her eye socket for the painted ocular shell she'll have when she's older. Eventually she'll have an ocular shell that is painted to look exactly like her other eye, so they will be symmetrical.

-It lets the maximum amount of light into her eye, which may help strengthen it, if it is able to be strengthened. . If they decide her eye is able to see enough, the only painted part will be the iris, and the pupil part will be clear so she can see through it. If she doesn't end up having enough vision, the pupil will be painted.

-It also magnifies her eye a little bit, making her eyelids more open. Her eyelid sort of droops over her eye because the eye itself is so small, it's called a micro eye. With the shell, her eye is more open. The domed shape of the shell makes her iris look a little bit bigger, which is just a cosmetic benefit.

The appointment was a little bit traumatic for both of us, he showed us the shell, and how to put it in and take it out, then he took it into another room and we heard some machine noises as he made some adjustments, then he came back in and put it in again, then took it out again, and made some more adjustments. He gave us some advice, and some suction cups, and we were on our way! Surprisingly, Journey wasn't at all bothered by having a chunk of plastic in her eye, I thought I'd be fighting her the rest of the day to leave it alone, but she never even touched it. The traumatic part is pinning her down, holding her eye lid open, and sticking a suction cup in it!


Here it is with the suction cup attached.


Without the suction cup attached. There's a small hole at the bottom of the shell for drainage.


Here you can see the shape and thickness of it


And here's the suction cup we use! To use it, you squeeze the stick with one hand and attempt to hold the eyelids open with the other hand, put it on the ocular shell, let go, then pull the lower eyelid down and slide it out. I got it on my 2nd try, I was pretty surprised and excited about that! I was dreading this day, imagining a screaming baby with a suction cup in her eye, making phone calls to the doctor because we couldn't get it out!


We have to wash it with soap and water and put it back in in the morning, wish me luck!

Summertime

We've hit official summertime, with the actual date of summer, and with our school year activities ending. Vivi finished her dance class and can't wait to go back in the fall, and Journey can't wait until fall either because she'll be old enough to take dance too. Jeb had his last day of soccer and a pizza party where they handed out medals, and the spring semester at the homeschool enrichment hub ended. He really enjoyed all 3 of his classes, especially his tap class. Know that he knows you can take classes for all kinds of things, he wants to take tap, soccer, gymnastics, and swimming. I haven't been able to find a swimming class this summer, everyone is doing week long camps, which I don't really want to do. He says he wants to play soccer again in the fall, and he'll be old enough that it won't just be learning soccer, he'll have a weeknight practice and a Saturday game. Hopefully the fall semester at school will have a tap or gymnastics class he can take, and I think he'll have to wait on the others, I don't want to overschedule all the activities :)

Jeb also went to vacation bible school (VBS) at a local church. Our church is doing one later this summer but I always loved VBS and it's something to do, so when I saw that a friend's church was doing a Babylon themed program, I thought it sounded really cool. He had a blast, he loved the singing and dancing, the crafts, and the snack, and even memorized a couple of bible verses. Our church is doing one in July, and then another friend's church is doing one in August that one of his buddies will be attending, so he'll do that one too.

Vivi got sick and missed her last day of dance, so I don't have a picture of that, but here are Jeb's last day activities:

It's kind of funny, just over a year ago we had one toddler, and all we did was play dates and library story times, and now we have 3 kids who are all old enough to take classes and explore their interests. What a big change!



We also celebrated Journey's 1 year anniversary of being in our family, and of being an American citizen! Here a picture of the week she came home, still very much a baby at 15 months.

And a year later, such a big difference!

Even though our spring activities have ended, we are keeping just as busy with play dates, the library summer reading program has a craft or a show every Tuesday, and story time every Thursday, multiple trips to the zoo already, and lots of time playing outside. The kids (mostly Jeb) discovered that you can get a book about ANYTHING at the library, and this week we ended up with about 15 books, almost all non-fiction, about ambulances, aircraft, different kinds of animals, and a book about different jobs of people who work at a zoo, which Jeb loves because he wants to work at the zoo when he grows up. He can't decide if he wants to be the person who feeds the animals or the animal doctor who gives them medicine when they are sick. He also said he is going to bring a baby crocodile and a baby tiger home with him and take care of them :)

I just realized I didn't get any pictures of Vivi in this post, so I'll share a silly one. My mom dropped a plate of cupcakes off after the kids were in bed, and I put them on the table. Eric and I were in the back room talking when we heard a noise, and discovered this:

My little opportunist! She must have come out to find me but saw the cupcakes on her way. The one in her hand is the 3rd one, she left a pile of wrappers, crumbs, and frosting as evidence. And now we have to be careful, the last few nights she has been sneaking out of her room after bedtime to look for more goodies!

Another Journey update

I haven't posted in almost 3 weeks! A lot happened in those 3 weeks, but I'll start with Journey's health stuff.

We went to the pediatrician who agreed that she is most likely having seizures, and got referred to a neurologist. The pediatrician wanted us to postpone Journey's tonsil/adenoid surgery, but the neurologist said that she would be ok, as long as the ENT and the anesthesiologist were on board. He wanted her to get an EEG, but their technician wasn't in that day. He told us to call and schedule an appointment, but then when we called, they said that we don't call them, they call us after preapproval from the insurance. Then they never called. So we called Children's hospital to see if we could get an EEG during her hospital stay, but they didn't have any openings.

The geneticist had wanted her to get a brain MRI, but wanted to wait until we did all of the other tests first in case they could pinpoint her syndrome without having to put her under to do the MRI. When we found out that she was having surgery anyway at the same hospital, we emailed genetics right away to see if they could order the brain MRI to happen at the same time. They said they would try, but we couldn't get it scheduled because the MRI anesthesiologist wasn't in that day...even though she already had an anesthesiologist and would already be asleep...it was a little frustrating that we weren't able to get any extras in. We ended up scheduling the EEG and brain MRI for different dates.

The surgery went really well, she was a trooper as usual. She had her tonsils and adenoids removed, and she also had a more in-depth hearing test than they were able to do while she was awake. At least they could double those up in one day!

The results of her hearing test weren't great-she has moderate hearing loss in the higher frequencies (I was surprised, I thought it would only be mild) and the audiologist said hearing aids would really help her, and put in a referral for speech therapy. BUT even though her hearing loss is moderate, it is just above the line for insurance to consider hearing aids a need, so we have to pay for them out of pocket. Kind of a bummer, but we want to give her every opportunity to succeed. I found a website that lets you do monthly payments, and there may be a program she qualifies for that can help pay for them too. We'll find a way :)

Both procedures took a total of 3 hours, and then she was in recovery for about a half hour before she started waking up and they came to get me. She was crying and sounded hoarse, but when the nurse offered her juice, she said "yes please!" and drank the whole thing and asked for more. The nurse was surprised that she was so willing to swallow, she said usually it's a struggle to get kids to drink right after surgery. She had some fluid in her lungs and needed a breathing treatment before leaving the recovery room, but eventually we made it up to our room.

Our nurse was awesome and super nice, making sure we had everything we needed to be comfortable, and running around checking snacks and calling the kitchen to make sure Journey would have enough dye-free snacks. Turns out Children's hospital doesn't have any ice cream, pudding, or popsicles without artificial colors-lame! Luckily my parents were coming up to visit anyway so they stopped and picked some up. The nurse also grabbed a bunch of apple juices for us to hide in our room because it was the only dye-free juice they had. We ordered soft foods for dinner, applesauce and a berry smoothie, and when the nurse came in and saw her finishing an applesauce, she also commented on how great it was that she was so eager to get back to eating so soon without any encouragement.

The night was pretty rough-the night nurses were horrible and she cried a lot of the night, mostly because I had to keep calling when it was time for more morphine, even though it was in her chart that she should be getting it every 2 hours. And then they would never come when I called. And the pulse ox alarm kept going off every time she kicked her foot, and would beep for 5 minutes before someone would turn it off without even coming in to check...I think I got an hour and a half of sleep total, but not  all at once.

The next morning we had a slightly nicer nurse (but not nearly as awesome as our first nurse!) and we made friends with our roommates and spent the day chatting. Because she was so eager to eat soft foods, the nurse said I could order her some regular foods for breakfast to see if she would eat them. She had scrambled eggs with cheese, cottage cheese, and something else that I'm forgetting-but she ate them all and they said she'd get to go home that day. A cart came around with coffee and bagels for the parents, then a guy came around with bingo cards and markers and said to turn to an in-hospital tv channel for a bingo game. Our roommate was also a baby, so his mom and I played bingo for them while they napped and we drank coffee and chatted, it was more fun than we thought it would be. When you get a bingo, you call a number from your room phone and they send someone in with a basket of prizes. Our roommate won, and then after the game someone came in to collect the cards and gave prizes to the kids who didn't win. Journey picked a little stuffed cat.

We got discharged at lunchtime and our roommate had just fallen asleep, so his mom came down to the cafeteria for lunch. They don't deliver food for the parents, just for the kids, so we were both starving. Journey scarfed down a big bowl of macaroni and cheese and ate some cookies.

We had another dye allergy related disappointment before discharge-the ENT wanted her on tylenol with codeine, but they don't make it without the dye, so she had to just get regular tylenol.

She recovered quickly and sounds great! No more loud breathing or gasping while she sleeps. The first few days I kept checking to make sure she was breathing because she is so quiet now!

Pure Joy :)

I know I'm way behind in posting and updating but I just HAVE to share this picture! Eric's brother got married today, which was SO much fun, but one of the highlights of the evening for Jeb (and for me!) was that the wedding site was right next to some working train tracks, so Jeb was able to see 2 trains go by!

I heard a train coming and rushed him over to where he could see it, and then snapped a picture of his reaction. As you can see, he couldn't belive he was seeing a 'real big train' and was thrilled!