One Year Later

This past weekend marked one year since Harry first got SJS. In some ways it seems hard to believe that it all started that long ago. But looking at him playing and being happy sometimes makes it seem like it's impossible that it even happened at all. Friday was the one year mark of him being hospitalized, followed up the next day by being intubated and transferred to St. Louis. We decided instead of wallowing in unhappy memories, to create new, happy ones. So, rather than recount all the details while reflecting on where we were this time last year, I want to talk about a positive part of the whole experience.

Having a critically ill child is probably one of the most difficult things a family can go through. It is physically, emotionally, and financially draining. Thankfully, Ronald McDonald House is able to help with all of those needs. We have had the opportunity to stay at two different Ronald McDonald Houses: when Jack was born and when Harry was sick. Though the houses were different, the basics were the same. They provide very, very affordable lodging to families with children in hospitals far from home. (Think less than $10 a night!) And, no one is turned away for not being able to pay. In addition to that, every night, a volunteer group comes and cooks a free dinner for the families staying in the house. There are also snacks and other food available for the families at no cost. There is also a free laundry room at each house. In St. Louis, the hospital has a Ronald McDonald House lounge in the hospital. It had showers (way nicer than the ones in the family lounge at the PICU,) snacks, computers, books, and much more to help keep parents comfortable while staying with their sick children. They also had free laundry facilities. Often, the awesome volunteers would switch out the laundry and fold it for the parents. The Ronald McDonald House Charity works hard to meet the most basic needs of families while they are going through one of the worst times they will likely have in their lives.

I think that when people donate to charities, they sometimes wonder if the contribution really helps the people it's supposed to help. You can rest assured that donations to the Ronald McDonald house really are making a difference in the lives of the people they help. If you'd like to make a contribution to this worthy charity, there are many ways you can help. The easiest way is to drop your change in those collection boxes in every McDonald's restaurant. Last year, those boxes collected more than $27 million to help families of sick kids! If you live near a Ronald McDonald House, they could use donations of travel sized toiletries, toys, and food. A more specific list can be found here. You can also get a group together and volunteer to cook dinner one night. There were church groups, co-workers from an insurance office, and just groups of friends wanting to help out that provided meals during our two stays. More information on volunteering can be found here. Doing something small can really add up to help families.

Looking back at the past year, I want to again thank everyone who has prayed for Harry and helped our family in so many ways. We could not have hung in there without you and really appreciate all of you. Thank you!!! Hopefully, this time next year I will be writing about how this is all a distant memory :)



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An Update on Harry

Harry had an appointment with his regular eye doctor last week. This seems like the easiest way to update everyone who wants to know what's going on.

A few weeks ago, Harry had another tear in his left cornea. The good news is that it is all healed up. Unfortunately, it has caused even more imperfections in the already damaged cornea. In December, the cornea specialist recommended the use of contacts for the next ten to fifteen years to help regain his vision. (You can read the details of that here.) Cory and I took him to several appointments trying to get the contact in, and it wasn't going well at all. I went into last week's appointment with a whole presentation of why the contacts weren't a good idea for Harry. (Trying to put them in made tearing the cornea more likely, it seemed more invasive than the possibility of having two surgeries fifteen years apart, etc.) As I started to launch into my arguments, the doctor told me that I didn't need to convince her, because she was one hundred percent on the same page as me. So, that was a big relief. It made me appreciate, once again, what a great doctor she is. It's nice when some positive things happen at the appointments. :)

On the less positive end of things, a few eyelashes have returned in his right eye, which has been relatively problem free since August. They are scratching his cornea, though thankfully, not in an area that is affecting his vision. It is pretty uncomfortable for him, and increases his risk of an infection. So, they will need to be dealt with. His right eye hasn't had any vision problems, so it's important to get this taken care of before it starts to cause problems. These are lashes that have already been removed with electrolysis and have come back. The chance of lashes returning is about one in three. Since these didn't respond to electrolysis the first time, the two most likely solutions are cryogenically freezing the lashes, which has a one in ten chance of the lashes returning, or doing the reshaping/skin graft surgery that he had on his left eye in August. (You can read the details of that here) Harry has an appointment with the surgeon in about a week and a half. We haven't seen him since late September, and though he's very nice, we parted hoping we wouldn't need to see each other ever again. So, we'll know more about what will happen with the right eye after we meet with him. The dilemma in what treatment to choose is that if the eyelashes keep coming back, he will need to have surgery over and over again, which would probably lead up to him having to do the more intense skin graft surgery. So, do we want to potentially put him through several smaller surgeries and still do the bigger one, or skip straight to the bigger one, which could possibly be unnecessary. What Cory and I would like is for Harry to have to do the least invasive and the least amount of surgery possible. Hopefully, the surgeon will know just what to do!


For the left eye, Harry has an appointment with the cornea specialist on Monday to reassess the contact situation. The three likely possible outcomes of that appointment are: that he'll say to keep going with the contacts, he'll decide to do a surgery on the cornea using a laser to reshape it and fix the imperfections, or he'll recommend a cornea transplant. (Harry's regular doctor assures me that the last one is very, very unlikely and would be the last resort if the other options didn't work.) No great solutions here, but the reshaping surgery is the one we are kind of hoping for. It has the best chance of being permanent and not super invasive.

So, that's what's going on. We appreciate everyone who prays for Harry. His specific prayer needs right now would be that the doctors are able to make the best decisions, and that the treatments are successful. Also, once we figure out how to get the left cornea into better shape, we would appreciate prayers that the vision in his left eye will return. His left eye vision is 20/200, so while he can see some out of it, it is considered legally blind. Prayers for him to not be uncomfortable, and to recover well from the treatments the doctors decide on would be great, too! Again, thank you so much to everyone who has been praying for him all this time!

Harry Turns Five!!!!!

Since October, Harry has been telling me that he wanted a Phineas and Ferb party. He had a lot of plans, including me making "Phineas and Ferb suits" for everyone. (I told him I wouldn't be able to do that, but maybe I could make Perry hats.) Anyway, I had a whole Phineas and Ferb party planned, (including a scavenger hunt based on the theme song. I need to remember to give Frankenstein's brain back to Steph!) and about three weeks before his party, he let me know he now wanted a dragon and knight party. (He got an awesome dragon castle from Grandma and Grandpa Yeager, which was also in the playroom at the hospital. It's pretty much the only thing he remembers about being in the hospital and is definitely his number one favorite toy.) So, feeling slightly panicked with the quickly approaching party date, I scrapped the Phineas and Ferb party and threw together a dragon and knight party. I think it turned out pretty great.

The first request that Harry had was a pinata. I found a good tutorial for a dragon pinata here. Some changes I made were to use a flour and water mixture for the paper mache'. (Two cups of flour and two and a half cups of water.) Also, I just used newspaper, no craft paper. And I definitely do NOT reccomend drying it in front of a space heater. I put it in front of a fan overnight, which worked really well. The kids really liked making it. Jack said how fun it was. I replied that it was messy, and he said, "It's fun because it's messy!"

At the party, the kids decorated poster board shields. (I traced a toy shield from the Dollar Tree.) Then they armed themselves with these inflatable swords to get ready for "The Quest." (Big thanks to Steph for ordering them with her Prime account so they got here in time for the party!) "The Quest" was the game. It started with pin the flame on the dragon, which I made from construction paper. Then, the kids needed to collect boulders (balloons with candy in them,) knock down the castle wall (big cardboard bricks,) collect the dragon eggs from the nest (spray painted Easter eggs filled with candy,) and capture the dragon (the pinata.)

Cory made an amazing dragon cake. (I wish that the people of Coles County had a great need for party planning. Then I could have a job planning parties, and Cory could make all of the cakes for the parties. If only...) The food was dragon wings (chicken wings,) dragon claws (Bugles,) fruit swords, dragon scales (chips,) veggies, cheese and crackers, dragon eggs (Jello jiggler eggs,) and dragon egg punch (cran-apple juice and Sprite with egg shaped ice cubes made in the Jello egg mold and my develed egg tray.) Harry had so much fun! Thank you to everyone who came to celebrate his special day! Here are a bunch more pictures!

Here's a list of websites where I got party ideas:
www.couturiermommy.com
http://celebrating-family.com
www.sweetshoppedesigns.com
my Pinterest birthday board

Borax and Purex Crystals for Baby Winners!

The six winners for the 20 Mule Team Borax and Purex Crystals for Baby giveaways!

20 Mule Team Borax

Cat M.

Sara Y. (I know it says M. on the Rafflecopter widget, but that's her maiden name initial!)

Jessica


Purex Crystals for Baby

Realia M.

Jill L-R.

Heather C.

Congrats to all the winners!!! If I know you in person, I will get it to you ASAP. If I don't know you, I will be emailing you soon for you contact info, so I can send you your prize. Thanks to everyone who entered!!!

Sleepover

So, the one big thing that Jack wanted to do over Christmas break was have a sleepover. Actually, he wanted to have three sleepovers: two at our house with different friends, and one over at a friends house. But partly because it seemed like this was the shortest Christmas break ever, and partly because it seemed like either my kids or Jack's friends were constantly sick, and never at the same time, no sleepovers happened. We actually had an "attempted sleepover," but Jack's buddy got sick and had to go home around 9:00.

After many weeks of Jack praying for the sleepover to happen soon, (Literally. Every night.) it finally happened last weekend. Apparently, having a sleepover is the best way to know that: A) You are a big kid, because only babies can't have sleepovers. And B) You are best buds, because you wouldn't want to have a sleepover with someone you didn't like. The boys watched movies, played video games, ate junk food, and stayed up waaay past bedtime. And they were (mostly) cool with their little tag-along, Harry. (Cute Harry side story: The big kids asked if they could bring drinks up to Jack's room. I told them yes, but to be careful. They went into the kitchen to get cups saying that they wouldn't spill because they were so big, and that there was no way that they would ever, ever, ever, use a sippy cup. Harry came to me and told me he needed to ask me something. He whispered in to my ear, "I want a sippy cup so I don't spill, but I don't want them to know." He's so cute!!! Anyway, no drink casualties to report.) A great time was had by all :)

I've been contemplating the allure of sleepovers, since I would say it has been Jack's top request as far as playing with friends go. (Harry has been asking too, though when he realized that it meant sleeping at a different house than me, he was less insistent.) I think I understand now. You get to stay up all night with your friends, having fun and watching movies while someone (in this case, me) constantly replenishes your snack and pop supply and cleans up after you. I think that having a sleepover sounds pretty awesome. I should try to arrange one with my friends soon! Preferably in a place without children and with room service. And a spa. Who's in?

Our Last Day of Project Step

Last week, Addie's preschool started again. This semester, she'll go five days a week. This means I'll have about an hour and a half of kid free time every day! (With the exception of Wednesday, when I volunteer in Jack's class.) Mommy guilt has me thinking that that is a lot of time each week and maybe I should like, get a job during that time, or something. I wonder what jobs are hiring for for one and a half hours, four days a week? Probably none... So I can use that time to get the house clean (or catch up on episodes of New Girl...)

Anyway, one big change that has come due to Addie's new school schedule is that we will no longer be able to attend the Project Step playgroup that we'd been going to. I first started taking Jack when he was fifteen months old. It was called Beginning Steps back then, and met once a week at the kindergarten near our house. It worked out that even after Jack started preschool, I was still able to take him until he was four. Harry and I went until he was three, and at one point it was two days a week. Eventually, when Harry was two and Addie was a baby, the local class was cancelled, and we started going to the playgroup in a neighboring town. During the welcome song, Harry would always insist that we not sing to baby Addie. Ahh, memories :) Last year, it was just Addie and me. It was nice to do something one on one with her.

Starting this year, the playgroup switched to being just every other week. Since I knew this would be our last semester attending, we made sure to be there every time. Two weeks ago was our last class. It was bittersweet. We all really enjoyed going over the years. But, after six and half years of going, it seems strange and a little sad that I no longer have any babies to bring. (Here's a sure sign that Addie is the third kid: Jack went until he was four. Harry went until he was three. Addie went until she was two! Sigh.) And the future of the class is less than certain due to funding cuts, etc. So, I am sad to see this wonderful program exit our lives, and will be even sadder if it has to end altogether. We have so many happy memories there, meeting some of our best friends, making adorable hand print projects, learning Raffi songs... I am so grateful that we were able to have all of those great experiences, while at the same time I look forward to this new chapter of all big kids :)

So, here's to Project Step and one last time of shaking your sillies out.

Purex Crystals for Baby Giveaway!

Not long after I finished typing up the 20 Mule Team Borax giveaway yesterday, there was a knock on my door. I found a box with Purex Crystals for Baby. I was given a bottle of the regular Purex Crystals to try last year. (I loved them! You can read my review here) I think I might like these even more. I loved the sweet scent. It really reminded me of that yummy baby-just-out-of-the-bath smell. I had was nearly done with a marathon laundry session when it came. I wish it had come a couple of hours earlier so that I could have used it on even more of my laundry. It will be nice for my not-so-little babies' laundry to have a sweet baby smell :) (On the plus side, even though I couldn't use the crystals on all the laundry I did yesterday, there was one whole hour where all the laundry in the house was clean!!!) So, bottom line, I think the Purex Crystals for Baby are awesome. What's even more awesome is that they sent three coupons each good for one free bottle of Purex Crystals for Baby!

Purex is also holding a sweepstakes for great prizes to celebrate the launch of this new product. You can enter the sweepstakes here.

Contest rules and legal stuff: Use the Rafflecopter widget below to enter. The first entry is a mandatory follow the blog entry. Leave your email address so I can contact you if you win! Earn a bonus second entry by leaving a comment saying how you'd use the product. I will draw the winners on Monday, February 4. I received this product for free from Purex. As a Purex Insiders blogger, I agreed to try the product and post a review on my blog. My opinions do not necessarily reflect the opinions of Purex. This giveaway is open to U.S. Residents only.

Good Luck!


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