Costume Change Artist

There are so many things I need to blog about, and to catch up on, but I just uploaded a bunch of pictures and HAD to share. Our little Nathan is the world's best 6 year-old costume designer. Instead of trying to figure out what to do every afternoon, he spends his days deciding what to be.... Nathan lived a couple years of his young life as a pirate (seriously, every single day), and then a scarecrow for a while, and then back to a pirate. Well, he's now added a few other passions and possibilities to his list of "what to be when I grow up". Let's hope he settles on something profitable and responsible someday, before he's a husband and father!

Pierre... the mime. Or, sometimes Pierre... L'artiste de Francais!

Chef... Boyardee... uh, Nate!

A clown. He put this costume together ALL by himself. Rachel and Sarah hate clowns—they think they're scary. So, his favorite clown thing to do is to run after them, hide and jump out, and scare them. Good thing he hasn't seen Stephen King's "IT".

Superman (Love the addition of the red underwear to complete the costume!)

Shepherd in the Christmas program... this is the only costume I've EVER told him to put on. :)

This one is an old one (Christmas 2009) but still one of my favorites.

Scarecrow.... outstanding in his field.

This is proof that he literally LIVED in that costume. No matter what we were doing, and no matter where we were going, he was Nathan the Pirate...always.

National Honor Society

At the beginning of October last fall, Rachel was inducted into Century High School's chapter of National Honor Society. I came home from Utah (while Sarah was in the hospital) on the Salt Lake Express to surprise Rachel. I wanted it to be a complete surprise, but we had to tell her ahead of time. She was really, really sad that we weren't there, and must have thought we didn't care enough about her to be there for her too. When she started making plans to go with her friend and her parents, we decided we needed to just tell her. In retrospect, I see that we made a mistake about surprising her. We should have just planned with her from the beginning for me to be there. She went through a lot of agony dealing with her feelings about it all.

That aside, it was a happy reunion when I came home to be with the kids, and we all went to Rachel's induction. I was so proud of her and am so impressed with what a wonderful student she is and how much she loves learning. Her talents and abilities astound me. 

 

My little sister used to always say how much she hated when people said she "has so much potential", as if she wasn't living up to what she could be now.... But, I think they simply meant that they could see so much in her that could prove to be nothing short of amazing as she grew and developed. I see that in my incredible daughter... so much potential, and nothing short of an amazing woman in the future. Love her so much!

Hopspital Photo Ops

When Sarah was in the hospital in September and October, we tried to find things that would brighten her room and bring a little joy and light to her life. Here are some of the things we enjoyed most while "trapped" in our "sterile" boredom...

 

Sarah and I painted her windows to improve the view and brighten her room. (Housekeeping didn't really like this, so we only did it during our first stay. It was so cute though, and did make her smile!)

Sarah listened to music... and slept... a lot.

We put together puzzles and played games from the playroom. We dragged a few of our favorite games from home, too, when we realized we might be there a while.

Sarah and I added a Cricut to our list of wants... Sarah's Aunt Susie and her cousin Toni took the day off work and came to play with paper and they made darling decorations for her window! The time passed so quickly and she had a wonderful time!

We cuddled...

... and smiled, as often as possible. When it didn't seem possible at the moment, then we looked for specific reasons to smile.

Facebook, Skype, texting and the telephone were lifelines to the "outside" world. (I think she was actually ordering her dinner or lunch in this picture, but we did spend a lot of time talking to people who love her!)

A Hawaiian Luau, complete with grass skirt and flower lei....

Upon hearing that she wouldn't be heading home (yet again), a few of her wonderful aunts in Utah threw together a luau in her honor. 4 Aunts, 1 Uncle, and a handful of cousins surprised her with a little tropical get away in the 3rd floor conference room.

...And a surprise visit from her best friend, Autumn.

Reading, listening to music, and watching the "smileys" do their tricks. Sarah got one of these little guys on her breakfast tray every morning holding a card with a silly little joke on it. They became a highlight, as she would share her jokes with the phlebotomists that came to draw her blood every morning at the crack of dawn. Her brothers loved hearing them each time we talked too. Steve was entertained for a moment each day by adding another little "smiley" to her collection. They got pretty tricky by the time we went home!

Had to do just one more puzzle with Mom before heading home. (It does take more than a few hours to finally leave once they give the word!) Doesn't she look great? That's a real smile, now!

Since I've been gone...

I sit here looking at my blog, and although I know I've been somewhat neglectful, I can't believe it's really been two months since I last wrote. Getting back into my "business as usual" life wasn't quite as easy as I thought it would be. After being at the hospital with Sarah, my routine was all messed up, and I was totally out of sync. Jumping back in with both feet seemed the easiest way to get back into life, but for some reason it seemed impossible to actually keep up. There are things that can be put on the back burner for a little while (like blogging, reading, and deep cleaning), and things that have to have your attention (like children, mealtime, dishes, laundry, dirty toilets and more laundry). So, once I felt like I was getting on top of at least the latter again and finding my "groove", then we started preparations for Thanksgiving and Christmas. It's a wonderful time of year, and as I cut out extra (and seemingly unimportant) stressers, we had a very nice holiday month all together with a healthier daughter, five happy kids, and two very grateful and happy parents. I'll try to catch up soon on the happenings since we've all been back together, but I won't make any promises, because I never know when something else is going to creep in and take over.

All Hallow's Eve... Beginning Five Days Early

Halloween this year was exciting for some, stressful for one, and just plain great for me! :)

Steve was elected (since he was the parent at home with the kids that week) to prepare Halloween Costumes for the kids this year. We always do homemade ones, unless we get lucky. This year we were lucky on a couple, and had one very special one to create. I was at the hospital with Sarah the week of the Ward trunk-or-treat, so the costume department turned to the Father this year to get everything done five days before Halloween. He did such a wonderful job, I've decided he's in charge every year. I promised not to make him do it all alone, during an election, and with a daughter in the hospital again, but I loved that he did so great...and I didn't have to!

Nathan was a Skeleton Pirate. Two of his favorite things combined. We were lucky on this one. We had the skeleton costume from when the other boys were younger, and he lives every other day of the year in the pirate costume. He was creative, and we were lucky. :)

Bryson wanted to be the Grim Reaper for Halloween this year. I got really lucky on this one. My super sweet sister-in-law, Valarie, sewed him the cloak for his birthday and sent it to him the week before so I wouldn't have to worry about it, and he wouldn't have to settle for something else. He was so very excited! Steve added the sickle and the make-up (and some warm black sweat pants).

This was the special costume that had to be created. It was kind of a stress to get it done in time, but Joshua absolutely loved putting his own "parts" on the front from his workbench collection of torn-apart electronics. I loved the aluminum foil hat. He won "most creative costume" at the trunk-or-treat and reacted as if he had won the lottery!

Here's Rachel's version of a hippie. She put it all together herself, and in my opinion, looks way too cute to really pass for one of those greasy flower children of the 60's. 

Sarah and I got to come home from the hospital the next day, so we were excited to participate in the actual Halloween traditions.

On Sunday afternoon, we carved a pumpkin (that we grew in our very own garden), and on Monday after homework and dinner were done, I took the three boys trick-or-treating like we used to as kids. In the past, we've always had the trunk-or-treat on Halloween in the afternoon, and then just walked to a few of our closest neighbors, and drove to see a few widows in our ward and our Grandmas. That's always been enough candy, so Halloween night we just stay home. This year, with the trunk-or-treat five days before, Nathan was all out of candy by Halloween, so we just HAD to go again! (Plus, Joshua and Bryson were feeling yucky at the trunk-or-treat, so they didn't get much that night.) We bundled up and I dragged the boys around our new neighborhood to collect candy. They said it was fun, and they liked trick-or-treating. Rachel went with some friends in their neighborhood (I know, she's too old, but she hasn't ever really gone trick-or-treating, either!).

In retrospect, I've decided it's a really weird holiday, with really dumb traditions. I mean, what parent  that considers themselves a "pretty good parent" would ever allow their children to go around the neighborhood, talking to strangers, begging for candy in disguise, and not even expect them to say "please"? I never did before, but it sure was fun to show the kids the way I used to do Halloween!

Re-do and Expound

One thing I've learned about myself is I often break the promises I make to my blog. I never re-did or expounded on the last two posts while we were at the hospital with Sarah. We got to come home, and then life happened, and I just can't seem to find the time to do the things I want to do, like follow through. I guess that's what moments like this are for... putting everything else on hold, ignoring everything else that needs/wants your attention, and spending a few minutes listening to Jon Schmit play beautiful music in your speakers while you reflect, and catch up on your "me" time a bit. :)

On October 27th, I posted a short post about the basics of what happened that day. "We met Dr. Lynn Gershan, the medical director of Pediatric Integrative Services, and Dr. Rafael Firszt, the immunologist."

Dr. Gershan is basically PCMC's doctor of alternative medicine. She came in and talked with Sarah to assess her needs, and then spent some time the next two days doing treatments and helping her learn some new coping mechanisms. She explained that sometimes kids (especially those with critical and long-term illnesses) don't necessarily need more medicine or surgery. Sometimes their minds and bodies can help heal themselves by simply teaching them what to do and providing them with the right tools. She did a Japanese pediatric acupuncture (Shoni-shin) to activate some of her body's natural healing powers. She taught about aromatherapy (and made her a little inhaler with mint and lemon) to help calm her during hard times. She taught her self-hypnosis so she could better deal with her stress and anxiety. She was going to teach her some breathing techniques, but we got to go home before she had a chance. She also taught Sarah about "reframing". I love the idea that her mind can create more positive images to help her body heal. (For example, when the doctors talk about her "leaky gut", often the picture that comes to mind is of the cell walls with holes or her intestines seeping fluids. Dr. Gershan taught her to picture the cells closing up tighter and holding in that fluid, and allowing the body to absorb the important proteins that she "used to" lose.) I believe the mind has great powers, and though some think it's hokey, or kind of like living in denial, I like to think it's re-training the mind to think positively and allowing the body to follow the mind's example. We have much more power and capacity than we ever use in these minds and bodies of ours, and learning how to access that inner power is pretty cool.

Dr. Firszt came and visited with us about Sarah's immune system. Even though most of her tests came back normal, they are concerned that her body may not have the created the immunities that healthy people create after immunizations are introduced into the body. He wanted to do a full screening on her, but because she had received some IVIG (a donated blood product on immunoglobulins) to boost her immune system, the immunities that showed up could be someone else's. Gammaglobulins (B-Cells and T-Cells) are what fight infection, and Sarah's are extremely low. He said not to panic, though. Those cells are created in the lymph system and carried through the thoracic duct and kids with heart surgery history often have a damaged or compromised thoracic duct. Because she's been so "healthy" all of her life, maybe her low numbers have worked just fine for her all this time, and will continue to do so. Their concern, however, is that this mysterious "infection" she had might have been because the small amount of cells she has are no longer working for her at this age and stage of the game. So, he ordered a triple round of strep-pneumonia shots and put her on a daily antibiotic to fight off the environmental bacterias that are so easy to get this time of year, including the strep/pneumonia bacteria that may have caused the SBP (spontaneous bacterial peritonitis) they treated her for. We go see him again in February or March to have the full screening done and see if her immune system is strong enough to fight on her own, or if she will be needing more treatments and immunizations to keep her healthy in the coming years.

So, it was an interesting and enlightening couple of days, but I wished Steve had been there with me to learn and hear it all, too. That's one of the many hard things about being separated during these hospital stays. There's so much to take in, so much to learn, and so very much to... well, forget. Plus, he's a fan of "mind power" and I think he would have loved Dr. Gershan.

On Friday, Steve was planning to return to stay with Sarah, and I was going to go back home. But, in the morning the doctors surprised us and asked if we were comfortable going home soon. After the last two disappointments, we had decided to not even think about home and then we'd just be happy and grateful when they decided they were ready to let us go. So when I say "surprised", I kind of mean "shocked", and didn't even want to go there if they weren't serious. Sarah had a fever the night before and had been throwing up again that morning, so I was holding my breath until we got the final word. The doctors had all decided that there wasn't anything else to test her for right then, and although things weren't all the way better, they were comfortable that she had improved enough and we could do the same things for her at home that they were doing at the hospital. We also left with the understanding that we'd be back if anything got worse. So, we got to go home. And here we are, two weeks later... and we're still home! So great to be back together as a whole family, getting back into the swing of things and feeling a little more normal again.

Home Sweet Home

Well, my daily blog posts of our hospital adventure didn't last very long. I'm really really glad, though. That means that we're home! Sarah did pretty well today. She did throw up some today and had a low-grade fever tonight, but I don't think it's serious. Without nausea, her PLE is probably the cause of the vomiting. She's gone a couple of weeks though without, so I hope it goes away again soon. Her appetite has got to get better, now that we're home and she's not forced to choose from the same hospital menu every day. I really think it's going to take a while before she feels all the way better. Being sick for a month has taken its toll and she's thin, weak, and tired. I spent over an hour today organizing her medicine and making a chart so we could keep everything straight and keep track of her progress. We put all the hospital stuff away (kind of) and cleaned up all the boredom busters we had collected in our four weeks at the hospital. We had certainly moved in and made ourselves at home! It's so nice to unpack, knowing that we'll be home for a while (hopefully a very long while).

Steve found me this cartoon today in the paper. It made us laugh, and felt so appropriate at the moment.

I suppose when doctors aren't really sure what you've got, or what to do about what you've got, it would be comforting to create another problem that CAN be solved! :) We never really experienced that at the hospital, but it did seem occasionally like any progress would have been a good thing!

Today I learned that when you come home, even after a stressful month in the hospital, "normal life" is waiting for you, even if you're not ready for it. Grocery shopping, errands, dishes... they all think they're still important. It did feel good to be in my PJ's til noon, though! I suppose the rest of the "lots of things to do" will just have to wait! (How long do you think I get to use this excuse for my lack of desire to do all those things?)

Today we're thankful for being home together again. I'm so grateful that Sarah is doing okay still, and that we were able to be home together. In some ways it feels like we've never been apart. Then I look at my boys, and it seems they have changed so much since I hugged them 11 days ago. It just feels so good to be back together!!