Six months later...

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 Super Mario Bros. Birthday!

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.

Most of the ideas came from Pinterest. You can find them on my birthday party ideas board.

Jack had a great time at his party! Happy birthday to my sweet boy and thank you to everyone who helped him celebrate!!!

Harry's Surgery

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!

Quick Purex Giveaway - Let's Be Honest

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So, Purex sent me some coupons for FREE Triple Action laundry detergent. I kind of forgot about it, and now I need to submit it to them on Friday by 3 pm! It is to promote their new "Let's Be Honest" campaign. You can see the videos here on Youtube or here on their website.
To win, you must follow this blog and leave a comment saying which video is your favorite. Purex would be happy if you decided to click "like" or "share" on the video, if you are so inclined :) There will be two winners that I will be drawing on Friday at noon. The giveaway is open to U.S. residents only. My favorite video is the vacation fund one, "Lost and Found." Good luck!

National Park Trip 2012... Hot Springs National Park!

About two weeks ago, we went on our yearly trip to a National Park. This is our third year taking such a trip because I am slightly obsessed with visiting them all. In 2010 (pre-blog!), we went to Great Smokey Mountains National Park. Last year, we went to Mammoth Cave National Park. And this year, we went to Hot Springs National Park. (It and Cuyahoga Valley National Park are the two closest that we hadn't been to yet, so it was narrowed down to those two!)

Originally, when Cory took the week off for vacation, we were supposed to go to Cornerstone. But after they announced it was the last year and all the bands we wanted to see backed out, we weren't really sure about going. Plus, it would have been the opposite of fun tent camping in billion degree weather, so National Park trip it was! This was the least planned trip I've ever been on, which was a little disconcerting for me. (If you know me, you know I like to make lists, and lists of lists, and binders, and lots of plans. I can hear Melinda calling me Monica right now.) But, despite the total spur of the moment event that was this trip, we had a lot of fun!

Day one was mostly driving. We had to sell tickets at Cornerstone before we took off for our trip. After that, like forty-five minutes later, we stopped at a McDonalds with a playland for lunch. The boys declared it the best vacation ever, thus setting the bar pretty low for them to continue to be amazed! After more driving, we stopped at Lambert's Cafe in Sikeston. The kids were really impressed with this place, (and Harry began his almost exclusively grilled cheese diet that continued for the rest of the trip!) My family used to stop there on trips when I was a kid, so I was happy to continue the tradition with our three kiddos. (A tip if you go: cash or check only!) That night we stopped in Memphis for the night, before continuing to Arkansas the next day.

Arriving on the main street in Hot Springs was like stepping back in time to the 1920's. Cory commented that it almost had the feel of beach town, and it really did. We toured the Fordyce Bathhouse, which now serves as the office for the National Park Service. We walked around to the different springs, that are right in the middle of the town! The kids were fascinated about the water coming out of the earth hot. They really liked the spring that was visible in the bathhouse with crystal formations all around it. We also took a scenic drive up Ouchita Mountain area. Swimming, dinner, and yummy hand made ice cream at Scoops, and we called it a day.

The next morning, July 4th, Cory and Jack got up really early and went to Coleman's Miller Mountain Quartz Mine where they dug up lots of really neat crystals. They had a lot of fun, and the crystals are really neat! After they got back, we went for lunch at The Pancake Shop. The Food Network recommends the banana pancakes, but the Yeager family recommends the French toast. (FYI: They are only open until 12:45 and only accept cash or checks.) Then we went on a duck boat tour. Then we took off back to Memphis, and spent the night there. We stayed right downtown (Yay Priceline!) and saw two awesome fireworks displays.

Before heading home, we visited some sights in Memphis. I took the boys to see the Peabody Ducks. (We stayed right next door, and, though Ive been to Memphis several times, I'd never seen them before.) They sat right up by the red carpet and were thrilled when the ducks waddled past! Then we went see Sun Studio and Graceland, and drove by The Great American Pyramid. (Which, again, I'd never seen, and had been eager to ever since reading about it in a "Nancy Drew and The Hardy Boys Mystery" in sixth grade. I'm pretty sure whatever is was supposed to be is now out of business.) Then we took our leave of Tennessee, and headed home. (Oh Tennessee, with two of my favorite cities AND a National Park....)

Here are some pictures of our fun!!!

Summer Work Goals

A couple of weeks ago, I shared our summer fun list. We also have a list of goals for the summer.

Jack
1. Read a chapter book each week and write a book report about it. I found a good template for book reports on Pinterest. You can find it here.

2. Complete his summer school work binder. I printed a variety of math, writing, and English worksheets from education.com. This is an awesome resource for worksheets categorized by grade level and subject. You have to set up an account, but it is free. This is the second summer we've used this website for Jack's summer work packet.

3. Help around the house more. He is now responsible for putting away his own laundry, cleaning his room each morning, and (with Harry's help) making sure the playroom is clean before we go out for the day.

Harry
1. Learn to write his name

2. If number one works out well, learn to write the rest of the alphabet.

3. If the first two go well, start Hooked on Phonics Kindergarten. (I think 2 and 3 will become fall and winter goals!)

Addie
1. Get potty trained!!! It's day two of trying. I have to admit it's partly for selfish motives. This is earlier than I potty trained the boys, but I think she might be ready, and I have $15 in Amazon gift cards that Purex sent me for Mother's Day. I really want to use it to buy Shadow of Night for my Kindle instead of using it for diapers.

Whole Family:
1. Keep the house clean (This is mostly my goal, and having Jack pitch in more is helping. But I'm not doing a super great job with this...)

2. Do an art or science activity with the kids each week. This is going okay. Last week we made invisible ink from The Dangerous Book for Boys. I guess we have until tomorrow to do something for this week!

3. Do something fun as a family, all five of us, at least once a week. This isn't really work, but it is tricky to work out with Cory's schedule. This week, we went to see Brave.


Last week, we were able to check watching the cinematic gem, Scooby Doo Meets Batman, off of our Summer Fun List.

Why I love gDiapers

Why I love gDiapers.:

Addie wearing her super cute, gray ruffley gDiaper for her six month photo.
(The picture was taken at Sears, if you couldn't tell ;)



Addie wearing the same super cute, gray ruffley gDiaper at twenty-six months!