Way back in May, when the kids and I made our Summer Fun List, Harry wanted "go to the circus" on the list. I was pretty sure that wasn't going to happen. Happily, I was wrong. It turned out, a little family owned circus had set up at the little airport near our house. Kids got in for free, and adult tickets were buy one get one free. So, even though it was a school night, (actually, it was the first day of school!) we set out for a cheap night of family fun under the big top. Also, the previous week, I had finished reading The Night Circus, which made it impossible for me to turn down a chance to go to the circus.
When we first walked up, Cory and I were a little skeptical. Cory kept reminding me of my childhood heartbreak when Circus Vargas set up in the Venture parking lot with promises of a unicorn. It turned out to be a goat with one horn. But Great American Family Circus promised an elephant, not a unicorn, and I was pretty sure that couldn't be faked. The kids were so, so excited. We filed in and sat on the bleachers. They encouraged the kids to sit in the grass surrounding the ring, so Jack and Harry were really close to the action.
Finally, the show started and all of our concerns vanished. As far as I could tell, the performers were all from two families. And several of them were very young (little kids and teenagers.) It atarted with a brother sister juggling act. The boys gasped in amazement when the brother juggled with fire. Addie loved the contortionist, and was mimicking her from the bleachers. She pointed in wide eyed wonder at the "aerial ballerinas." Jack laughed until his tummy hurt at the little boy and girl dressed as a lion and lion tamer (and kept looking back at me to make sure I was watching the hilarity.) Harry's favorite was the ladder act. And we all enjoyed Tiny, the elephant. The ringmaster was funny and genuine. (My favorite part was when he, in a thick what I thought was Russian accent, asked the boys and girls to promise him they wouldn't do drugs or join any gangs. He was really sincere about it.)
The performers were so talented, and I found the whole thing to be charming and a little magical. I think the "running away from the circus" seed has been planted in all three of my kiddos minds and hearts.
The week before school started, my mom took the kiddos and me on a trip to Atlanta to visit my Aunt Elaine. She has a beautiful house and an amazing pool, so that alone would have been a fun trip. (Though, based on the amount of times my boys decided to pee outside, I'm guessing the neighbors felt like the Clampetts had moved to town. Boys. Sigh.) But we also did lots of super fun, kid friendly activities. We spent the first day hanging out around the pool all day, but after that we were off! (Though we did find time to swim every day.)
Our first day trip took us into the city. We ate at The Varsity, the world's largest drive-in. Then we went to the nearby Centennial Olympic Park. The kids (and my mom and me!) had a blast playing in the Olympic ring fountain. It was fun and free! I also found my brick in the plaza that my aunt got me for Christmas the year the park was built. Next, we went to Stone Mountain. The boys and I rode the cable car to the top and explored the mountain. (They kept saying things like, "It's a good thing Daddy's not here becuase he would be afraid." And they were correct!) Then we all walked around the park. We just missed being able to see the nighttime laser show and the amusement park activities. (School in Atlanta starts on August 1st, so all the extra attractions close. If you are planning a trip there, make sure you check what they have going on before you go on and on about the laser show to your children, and then have to explain to them that you were wrong about it, and would, in fact, not be attending it.) It was a great day!
The next day, I got to live the dream of every girl who grew up in the 80's and go to Babyland General Cabbage Patch Hospital! But it was for the kids. Really. Yeah, the kids. Anyway, it too was free and awesome. (Though they have plenty of stuff available for you to buy;) We got to witness a "birth" in the cabbage patch, which was pretty cute. They asked the audience for volunteers to name the baby, and Jack was chosen! So, if you are at the Cabbage Patch hospital and see a doll named Jackson Toby, he's named for my Jack :) There was a ton to see and play with. The boys left with new toys curtesy of Grandma, and Miss Adeline left with a new doll, Bianca Chelsea, who looks a lot like her! Though Harry tried to deny it when we got in the car, all three of the kids (and all three of the adults) had a lot of fun. After that, we ate a hibachi restaurant that mesmerized the kids, and, in an "It's a small world," moment, the chef let us know that he used to live in a small town about forty miles from where we live!
Our last big outing was to Zoo Atlanta. If you know someone in Atlanta, all 159 libraries in the county have free passes card holders can check out once a year. So, free passes in hand, we headed to zoo. It is a really great zoo. They have pandas!!! I was so, so excited to see the pandas. (I think that the other people at the zoo thought my panda enthusiasm was humorous. But pandas are only at four U.S. zoos, and I haven't seen any since I was five. Their lucky proximity to pandas has made them jaded to it being a big deal!) The parakeet exhibit was so neat. Though it might not seem like, the seed sticks are worth the dollar. The birds came right to us! All of the exhibits allowed you to see the animals really close up. And, the children's zoo had fun rides and a nice playground. Jack tried the rockclimbing wall! It was big enough to have lots of animals, but not so big that the kids were too exhausted to see everything.
There were a few other things we wanted to do, but ran out of time. We'll just have to do them next time!
It was six months ago today that Harry was admitted to the hospital. (Tomorrow will mark six months since he was transferred to St. Louis and given the Stevens-Johnson Syndrome diagnosis.) It seems like it was forever ago, just yesterday, and just a bad dream, all at the same time. I don't want to recount every single detail here. (I'm not sure anyone would want to read that, and it is still a little overwhelming thinking of the whole thing.) What I do want to do is (hopefully) offer some encouragement and advice for parents who find themselves in a similar situation of having a sick kiddo. I know that unsolicited advice is usually pretty obnoxious and annoying, so I will do my best not be that way. I promise!
Some of you may know that Jack was born prematurely and spent the first three weeks of his life in the NICU. At that time, Cory and I, being new parents, were not prepared for what happens when you have a child in the hospital. One good thing that came from that situation, aside from Jack being healthy and happy, is that we learned how to be advocates for our child.
When you are confronted with having a very ill child, it is extremely overwhelming. In our case, with Harry's disease being so rare, it had added complications. When we first mentioned SJS being a possibility, we were told there was no way that could be possible because it was so rare. I'm sure the doctor was thinking to himself something about us checking WebMD and thinking we knew as much as him. And, it probably is annoying, as a doctor, when people come in thinking they know as much as you because they Googled the symptoms. But, it turns out, that guy's diagnosis was wrong, and Cory's research on WebMD, and the diagnosis of a smart resident was right. My point with this story isn't to point fingers. It's to let other parents know that since doctors do know more than you about being doctors, it can be intidimidating. And most of the time, doctors are right. But never feel like you can't ask questions or give your opinions. Nobody cares about your child more than you or knows your child as well as you do. So, if you aren't going to advocate for your child, who will? And, good doctors will care about and listen to what you have to say. Don't be afraid to stand up for your child. When it came time for Harry to be transferred, we insisted that they find the best hospital for this condition. This was not what the doctor had first planned. He was planning on transferring us to the next biggest hospital locally. This most likely would have resulted in Harry being slowly stepped up to bigger and bigger hospitals while getting sicker and sicker. But because we let the doctor know our wishes, he listened to us, and sent Harry to the best place for his condition.
I can think of many other examples of us advocating for him, but I won't bore you with them. My main point is just to be confident in your instincts. You know you want what's best for your kid and are entitled to be included and consulted in all decisions about your child's health and treatment. Trust yourself. Also, most hospitals have a patient advocate you can talk to who can advise you on your rights as a parent and your child's rights as a patient. So, if you are nervous or need guidance, that's a good place to start. I hope that you never need to know this stuff, but if you do have a sick child, hang in there. I know it's tough.
On a happier note, today is Jack's first day of school. (The little kids start next week, so I'll do a back to school wrap up after that.) Tonight, per Harry's request, we will go to the circus. From a ventilator to the circus in six months seems like something to celebrate :)
Jack's birthday was almost a month ago! It's hard to believe that he's already seven! Now that he's old enough to pick his own themes, I was a little worried I end up having to plan parties for stuff I can't stand, but he's done a good job picking fun themes. Last year he wanted a Harry Potter party. This year, he wanted a Mario Brothers party. I think it turned out pretty great :)
The first thing we did was have every guest get their picture taken with the backdrop. Mario and Luigi costumes were optional. I got the idea for the backdrop here. I thought it turned out pretty cute. As soon as I get around to it, each guest will get their own photo as their thank you card.
Jack specifically requested that we play a fireball game, so I wrapped prizes in alternating layers of orange constrution paper and foil. The kids played "Fireball Toss" which was like Hot Potato, but you unwrapped a layer when the music stopped. Whoever unwrapped the last layer won the prize. (I found a Mario playlist on Spotify with songs from the video games that worked great for the game.) The other game was a Mario treasure hunt. I hid different Mario themed items in the backyard for the kids to find. The prizes were fireballs (red puffcorn,) sugar cookies decorated like "One-Up" mushrooms, star power (star stickers), gold coins (chocolate coins,) glow sticks, flashlight rings, turtle shells (mini containers filled with candy and decorated like turtle shells,) and Yoshi eggs (balloons filled with treats.) I put a piece of brown construction paper with a question mark on it on each stop of the treasure hunt. The kids had fun, and the treasures served as their treat bags.
There were lots of fun Mario themed snacks, too. (After the party, I realized I forgot to make the marshmallow/apple mushrooms. Grr.) My favorite was the chocolate mustaches (I got the mold from Amazon . There were also piranha plant cake pops, toadstool cupcakes, and the amazing NES controller cake that Cory made.
I'm way behind with blog stuff. I need to share Jack's birthday party (mainly for the benefit of people who share genetic material with me.) I haven't announced the winners to the Purex giveaway. (Congrats to June and Ashley. Unfortunately, one of the coupons was MIA after Jack's birthday party. Purex is sending me more, so I will send one out soon and the other as soon as I get it. I am so, so sorry for the delay!) What I'm going to talk about today, though, is Harry's surgery, (again, mostly only of interest to my family.)
On Wednesday, Harry had an appointment with his new doctor, who would be performing, what hopefully, would be a more permanent solution to his eye problems. My mom met me at the hospital to watch Jack and Addie. Afterwards, we were planning on going to visit my aunt. However, the doctor said he wanted to do Harry's surgery the next day, which though unexpected, was actually a good thing because he was in a lot of discomfort, and the lashes were starting to affect his vision in his left eye. Jack was pretty excited to be able to go to the Children's Hospital the next day. ("We'll go see the ball thing, look at the fish tanks, check out the gift shop, maybe get a little Dairy Queen..." I thought it was kind of funny, but also a little sad that he has a hospital's greatest hits routine.)
Cory met my mom, the kids, and me at the hospital. We didn't know what kind of surgery Harry would be getting. There were three possibilities, and the doctor couldn't tell what he would need until Harry was under anesthesia in the operating room. So, we signed consent for all three and for the anesthesia (which, even though the chance of complications is slim, it still rips your heart out every time you sign it.) After awhile, the phone in our room rang, and the nurse ( I think; Cory answered.) let us know they'd be doing electrolysis on the right eye, (which Harry has had done several times, maybe seven?) and a more complicated procedure on his left eye. The SJS and the several electrolysis treatments for eyelashes, have led to tissue loss in his lower eyelid and have cause the eyelid to flip inward, causing a row of eyelashes to always be scratching his cornea. Since the offending lashes were in a pretty straight row, and to try and return Harry's eyelid as close to back to normal as possible, the best choice was to make an incision to release the scarred area of the lower lid, pop the eyelashes back out where they should be, and fill the open area of the lid with a skin graft from the inside of his lower lip. They thought it would take about an hour, but it took more like two and a half. His little face meant that making tiny stitches was more time consuming than they thought it would be.
Everything went well. His front tooth that was used to secure his ventilator fought the good fight, but after almost six months of being wiggley, it came out during anesthesia. I know it's not a big deal, and if that's the only thing that happens after all of this, that we are pretty lucky. But looking at it makes me sad. I had it in my mind that once he started to get better, it would pretty much be like nothing had happened. His little tooth missing for the next three or four years will be a reminder that we have a new normal. But he is still perfect and adorable, so I will just need to get over it! Aside from the tooth, he looks like he's been beat up, but that will get better in the next few days and weeks. (Cory keeps calling him Glass Joe.) He is only in a little pain ("My eye kind of hurts, and these lines in my mouth." aka: the stitches from his skin graft) He is on a soft food diet for the next week or so. The anesthesia has made him a little wheezey, so he's needs breathing treatments from his nebulizer until he starts to sound a little better. He is getting his eye ointment a few more times per day than normally, and he had a little bit of bleeding on his trach site, which his ENT doctor assured us was not anything to worry about. All in all, he's doing pretty great considering. And, Jack and Addie were happy to spend the day in the sibling playroom. The workers remembered Jack from before, and Addie was finally old enough to play there. St. Louis Children's Hospital really is a wonderful place. (Side note: Last night, Harry said he was in pain and wanted more Tylenol. It was too soon, so I filled the medicine spoon thingy with apple juice and gave it to him. He went for it, and then fell asleep.)
Up next for Harry is an appointment on Wednesday, just to check in after surgery. After that, hopefully nothing! He will have some follow up appointments over the next few months to make sure everything is going well. The best case scenario is that none of the lashes come back in the right eye, and the reshaping of the left eye is successful and permanant. Other, less desirable, scenarios, involve the lashes coming back and the reshaping not working, which would lead to cryogenic freezing of the lashes, and if the right eye got misshapen, a surgery like the one he had on his left eye. We are praying that that won't happen though, and hopeful that the end is in sight. I read this article the day before the surgery, about a boy still having lash trouble four years later. I can't even think about that being a possibility, so please keep our sweet boy in your prayers. Also up next, hopefully, will be attempt number three at going on our Atlanta trip!
