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!!

PCMC - Day 27

WE CAME HOME!! YAY!! HOORAY!!

Today I learned that we could come home!!

Today we are grateful that we got to come home!!

:) Silly, I know, but we're just so happy be be here together!

(I will expound in the next few days, I promise!!)

PCMC - Day 26

Pretty good day today. Sarah was still tired and spent much of the day sleeping off the rest of the anesthesia.

We met Dr. Lynn Gershan, the medical director of Pediatric Integrative Services, and Dr. Rafael Firszt, the immunologist. We learned a lot of interesting things today about altertnative medicine and Sarah's immune system. She's still feeling pretty good, but had a fever again tonight...darn it!

I'll re-do this post in the morning and expound. We're really tired and need to go to sleep.

Goodnight!

Daily Blog - PCMC Day 25

Today actually started in the wee hours of the morning. Sarah spent most of the night being awakened every hour or half hour for uncomfortable things to help prepare for her colonsocopy. After morning vitals, we were visited by the oncologist (the doctor doing the bone marrow aspirate) and she said she'd see us at 1:15. We were obviously confused, since we had been preparing all night for tests at 7:30 a.m. They were planning to run them together since she'd already be under anesthesia and in the OR. They had originally scheduled them separately, then together in the morning instead, and somehow didn't get the message to oncology. In looking at the schedule, the teams decided the later time worked better for them. We were beyond frustrated with the inconvenience and stress this caused Sarah (not to mention serious lack of sleep, and no food or drinks now til afternoon). I expressed our frustration to the poor innocent nurse and resident, and then realized that it was already decided, and there was not much to do except be positive and try to help her cope. We passed the time pretty well with a morning nap, a visit from Aunt Kathy (Steve's sister) and a game of doodle dice. Before we knew it, the time had come.

All Sarah remembers is talking with the anesthesiologist, getting some "relaxing" medicine, and telling me goodbye. The next thing she remembers is waking up in her room, 4 1/2 hours later, feeling sleepy, but pretty good. Even though it makes her a little weepy, versed is a pretty great amnesia-inducing drug! The procedures actually only took about an hour and a half, and all went well. There will probably not be any results for about 48 hours, but she handled them beautifully, and the doctors were able to collect all the cells and biopsies, and see everything they needed to. She is pretty comfortable and now receiving a broad-spectrum antibiotic in her IV while we wait for answers. (No reason to sit around wasting any more time, huh?) Hopefully, by Friday we'll have the answer to this puzzle that has been so aggravating these past few weeks. I'm frankly a little nervous about the results of these tests. I'm scared that they still won't find the answer to her inflammatory markers and  mysterious fevers. When I decide to be positive and hope that they really will solve the puzzle with these tests, I'm kind of scared of what they will find. I know that's the goal, and what we've all been praying for, but the unknown is not something I'm very eager to face head-on these days.

Steve is home with the kids, being a daddy, mommy, and candidate, catching up on the last 3 weeks away from home, and putting together Halloween costumes and a City Council campaign. Mom has helped a lot after school, and continued being the wonderful Grandma she is. The kids are so happy to have him there, and as much as they need him, and he needs to be there, it was so hard today to be apart. Sure hope we don't have very many more of these "hard" days ahead.

Today Sarah is grateful for anesthesia and for good doctors that know what they're doing. I'm thankful that there were no bad surprises or complications and that it's all over for another day. I'm also thankful for our family and all the wonderful things they're doing for us to help us through this tough time.

Today we learned that just because a day starts out bad, it doesn't mean the whole day has to stink. Today ended up being a pretty good day, thanks to our Father in Heaven for sending (in various ways) the comfort and love He has promised.

Daily Blog - PCMC Day 24

At the suggestion of a member of the Rainbow Kids team, I decided that I am going to post on our blog every day now, at least for a while. I hope this will accomplish a few things for me and my family...

1. Provide daily updates for our family and friends to know what's going on through Sarah's current hospital stay.
2. Help me journal this experience in our life a little better and more accurately.
3. Give me a place to write my feelings and insights into what this experience really is to me, and how it affects me and the people I love.
4. Help me take a few minutes every day to reflect on blessings we're receiving and things we're learning through this experience.

PCMC Day 24

Sarah is doing pretty well today. She is feeling a little more sleepy than she has been, but it's been a pretty good day otherwise. Her tummy is a little smaller and she still has some diarrhea and fever, but her appetite is still really good, and she's pretty happy, considering we're still here. She is no longer receiving any antibiotics right now, with the assumption that the bacteria that's causing the fever will be able to grow better if it's not sterilized by the antibiotics. They have assumed the fluid in her belly is what was infected, and there were inflammatory markers and elevated white cells, but the cultures didn't grow. So, with no antibiotics on board, they are repeating a bunch of tests for common intestinal illnesses through blood and stool tests. At this point, we're hoping for some more symptoms to rear their ugly heads, cultures to grow something definitely yucky, or for things to just taper off and get better.

Tomorrow, she is going to have a bone marrow aspirate (collection of bone marrow cells through a needle) to rule out salmonella and a few others that sometimes "hide" in the bone marrow. While she's sedated, they will also do a GI endoscopy and colonoscopy to "see" what's going on inside and can do biopsies of anything weird at the same time. She's pretty nervous about new tests like these, but will be sedated and safe, and I'm confident she will do fine. The hardest part is the unknown, only second to how weepy and tired the sedation makes her feel.

Today we're grateful for fun distractions like games, puzzles, Teen Night and a long walk through the University of Utah campus.

Today I learned that there is not pathway or sidewalk that takes you just around the hospitals, and that taking care of yourself is not neglecting someone else.

My October Gratitude List

Since things have been less than ideal in our lives this month, I thought I should share some of the things we are grateful for these days... (in no particular order, and most likely not a very complete list)

• For Primary Children's Medical Center - that the hospital is only 2 1/2 hours away, for incredible doctors and nurses that really care about Sarah, for specialists and cooperative teams trying to solve her problems, special teams like Child Life and Rainbow Kids, and that one of its purposes is to keep kids happy while they have to be here
• For the love, prayers, support and visits from our extended family, friends, ward family, and acquaintances
• That Steve's boss has been so understanding and flexible to help get us through this and keep his focus where it should be right now
• For Steve's friends that have helped with his city council campaign in his absence
• For home teachers that have mowed our gigantic lawn more than once
• That my mom is retired and has been able and willing to "move in" to take care of my kids so Steve and I could both be here as much as possible, and for my dad for helping and supporting her (and us)
• For Steve's parents for providing us with room and board, and wonderful meals, and company
• For Relief Society leaders that have completely taken over my calling so I could focus on my family
• For all of the "love" that has showed up on our doorstep... hospital snacks, presents for Sarah, meals, treats, Halloween surprises, cards, and money to help us through this stressful time
• That we have good insurance and Medicaid for Sarah so the hospital and doctor bills haven't caused any extra stress
• For social workers that arranged a room for us at the Ronald McDonald House and other reimbursement programs to help relieve some of our other financial burdens
• That my sweet sister-in-law sewed Bryson's Halloween costume so I wouldn't have to
• For our patient children at home that haven't complained, but pray every day that we'll be home together again soon
• For technology (like videocams and skype) that allow us to "be with" our kids sometimes
• For Steve's sisters that planned a "surprise Hawaiian luau" to brighten Sarah's otherwise frustrating and disappointing weekend
• For the family members and friends that have come to visit, bring meals, do crafts with Sarah, and brighten our prolonged stay at the hospital
• For our sweet daughter Sarah, and her incredible example of faith and long-suffering
• For our Heavenly Father's love and care, His plan, blessings, and tender mercies
• For our Savior, Jesus Christ, and His infinite love and atonement that grants us the strength to endure and the grace sufficient to overcome

Another Ride

I don't even know where to begin this time.... So much has happened, and there is so much to say.

We did get off the "roller coaster", the very next day. Late Saturday night, Sarah was released from the hospital. We went home with strict orders to watch and monitor her fevers, keep in touch with the cardiologists, and follow up with her pediatrician within the week. It was so very wonderful to be home together! Sarah was still pretty sick, but we did our best to keep her comfortable and keep track of everything. Thankfully, we still had another week of Fall Break for the boys and me, so I got to be the nurse and mommy while Steve worked and we tried to get back to "normal". I called to schedule Sarah's follow-up for the following Friday, and they didn't have any room for her that day. So, we scheduled it for Wednesday morning instead. By Tuesday night, I looked over the careful notes we'd been taking of her "at home" vitals, and realized that things really weren't getting any better. She still had little appetite, and the other symptoms were much the same, if not worse. We headed to the doctor in the morning, and he confirmed those thoughts. He ran blood tests again, and told us that she seemed even worse than when he sent her to the hospital two weeks earlier. He told us to go immediately to the hospital (in Pocatello) where they would get some IV antibiotics and more maintenance fluids in her. She was to be flown (by the Life-Flight helicopter) to Primary Children's again, where the experts were that could help her.

So, I guess, we were forced back in line for another ride... It was a different roller coaster this time. Same amusement park, but a different ride. As we boarded this "same, but different" ride, I thought, "I really don't want to do this again...". It has been a different ride, with more hope and success, more support and company, and also more frustration and tears. As we're (hopefully) drawing near the end of this second ride (day 12 today), I've decided I don't like this part of the park much. Most of the rides really stink.

*     *     *     *     *

On October 12th, we watched Sarah strapped into the helicopter and lifted into the air. Steve arranged for his sisters to meet her at the hospital when she arrived so she wouldn't have to be alone. She was stable, but it was so hard to see her taken from us again... just like when she was a newborn. When we had arranged everything and talked to each of the kids about going back, we headed to Salt Lake to find our 18 year old baby girl looking much better than when she left us. The next several days were kind of like a continuation of our last trip, but different in many ways. Instead of doing more searching for the cause, it seemed the teams of doctors were more concerned with finding a treatment. They decided the oral antibiotics she had been taking at home must not have been fully absorbed, so she wasn't getting the medicine in her she needed. They also started looking at some of the long-term things we could do to help her PLE, since the nature of the symptoms had seemed swing more to that disease. She stopped throwing up the day after she returned, and the fevers seemed to go away by the next Sunday. We were making progress.... The fever and white blood count, however, were still baffling.

I went home Saturday afternoon and stayed there with the kids until Wednesday afternoon and Steve stayed with Sarah. I was able to get some much needed time with my sweet ones at home, and also all 15 hours of work in at the school. While I was gone, it seemed Sarah just kept improving. Her cardiac team brought in Dr. Angela Yetman, who runs the Adult Congenital Cardiology Cardiac Program at Primary Children’s and the University Hospital. She specializes in adult patients with congenital heart defects. Kids with anatomies like Sarah's didn't used to live into adulthood, and now most adult heart doctors don't really know how to work with patients with such complex heart anatomies and complications. Apparently these same issues and treatments are different in adults and children. She immediately put the kibosh on a feeding tube, more albumen treatments, and the seriously low fat diet. She ordered iron infusions (to help with absorption in her intestines, slow down the gut, and raise red blood cell and oxygen levels) and a calorie count, giving Sarah the freedom to eat what she really wanted to, hopefully proving she could keep in enough nutrients to gain weight and be healthy again. I couldn't wait to return and meet this doctor whom Sarah has officially hired and seemed to turn things around because of her experience and expertise. If nothing else, it was a new (and welcome) perspective, and gave us a connection and starting point with an adult cardiologist.

Sarah was doing really well. Fevers had stopped, no more vomiting for a week, diarrhea was slowing down, and she was feeling really good. We were pretty concerned about how big her belly had gotten, but were assured that with all the swelling of her internal organs and the fluid that the albumen hangs onto, we'd need to be patient for quite a while before that would go away. With that settled in our minds, we were planning to be home on Friday. Then, late Thursday evening, there was another fever spike....

The doctors came in and delivered the sad news and my little angel fell apart. She was so disappointed and so homesick, she couldn't even really hear what the doctors were saying. Then, she wiped her eyes, and said courageously, "I really want to go home, but I don't want to have to come right back again. I'll stay as long as I need to to get better." It was a pretty hard morning for all of us, as we had hopes of being home with our whole family together again. Since she had a (new or recurring) fever again, they decided to go ahead and tap the fluid in her belly and test it to see if the peritonitis they'd been treating. (Everybody has a small amount of peritoneal fluid in their belly to cushion the organs in the abdomen. In the weeks prior, Sarah's hadn't shown up as an abnormal amount in the tests they'd run, so they hadn't tested it, but just treated it. They assumed that since everything else was negative, it was a logical deduction that her intestinal issues and swollen belly would contribute to that diagnosis.) When they checked on ultrasound, this time there was a serious amount of fluid in there. They took her in and tapped the fluid to test and removed 450ccs (almost 17oz) of fluid from her belly. It has made her feel better, and her appetite has really improved (more room in the tummy equals more calories in the tummy). We all feel much better about having had that done, and I wonder now if the fever was another tool of our Heavenly Father's to keep us here so they would go ahead with that procedure. Her fevers have continued the last 3 days at a low-grade level and now they're testing for common respiratory viruses to explain the fevers. If they come back positive, she'll be headed home, with a little "head cold", but knowing that the initial infection and issues are now better. More testing and more waiting....

It's Sunday again, and Steve and I are both here with Sarah at the hospital, hoping tomorrow will be the day. Waiting for cultures to grow can take a few days, and I'm worried that they'll want to have definite answers or no fevers for a bit before sending us home. Sarah is at day 29 of being sick, day 22 at the hospital and has had 35 pokes, with 11 IVs. I think it's time. But, I'm with Sarah on this. I really don't want to take her home until it's really time.... Heaven help us to finish this ride patiently.

The Hospital Roller Coaster Ride

I usually really like roller coasters. The twistier, scarier, and more adrenaline-rush-causing the better. I have decided, however, that I really don't like life's figurative roller coasters. In the midst of a struggle, it seems that every once in a while life tosses you some hope and then it's all dashed in a matter of moments with one sudden event. Then, you get to the worst part, where you think you might just lose your lunch, and there's suddenly a little more light and a little more hope again. Not that I'm ungrateful for the hope and the light. It's those miracles and blessings that makes our struggles and burdens easier to bear. I think it's just frustrating because the figurative roller coasters seem to be awfully long rides sometimes. What if I don't want to "keep my arms and legs in the car at all times"? I want to get off....

Last week, Thursday, September 29th, we checked Sarah into Primary Children's Medical Center. She had been really sick with a "stomach flu bug" (we thought) since the previous Sunday. I took her to see her pediatrician on Wednesday afternoon, worried that she may be getting dehydrated. With her diuretics and PLE, I wasn't sure how far to push her before we did something about it. We had blood drawn and an exam, and went home with some zofran (anti-nausea medicine) and waited for lab results. The doctor called back, close to 10 p.m., after discussing with cardiologists at PCMC what should be done. Her albumen levels (4-6 for normal people, should be at 4 for her) were down to 1.6. By the time we got her to the hospital the next afternoon, she was at 1.3. When she was so sick 3 years ago, her levels dropped to 1.2. The difference this time is that she hasn't been sick for months before doing something. But, her protein levels are about the same. Anyway, we checked her in for an overnight stay to receive some albumen infusions, with the hope that raising those levels would counteract the symptoms (swelling, diarrhea and vomiting) and calm things down in her gut. The problem, however, came with the fever she keeps spiking around 102 up to 103.4. The infectious disease team was called in to see what they could find. After days of stool, blood and urine samples, everything they tested for came back negative. They checked for things like urinary tract infection, bacterial infections in her blood, rotovirus, salomomonilla, listeria, and so many more I don't even know what they were. After several days of testing, growing cultures, and waiting for results, everything has come back negative.

The gastrointestinal team was called in a few days later (notice we are checked in for an extended stay now) to see if they could help explain why symptoms were not letting up with elevated protein levels. They recommended an ultrasound to see if she had an excess of peritoneal fluid in her abdomen that could be infected. It didn't show an unusual amount, so "tapping" it was kind of discarded for a bit. Yesterday, a whole week after our arrival, and the day following another fever spike, they did a CT Scan with contrast to see if her mal-rotated intestines maybe were twisted or pinched, causing the vomiting and diarrhea. They were also checking for arteries that could be clamping and pinching the bowel (because with her weight loss, she's probably lost most of the fatty tissue that protects the intestine) as well. Results of that test said that things seemed to be functioning "normally" without any blockages of any kind. That was a relief, but still left questions of what's causing the fever. They decided to treat the fever like any bacterial infection and gave her an IV antibiotic, hoping that in a day or two it will just fix the problem without explanation (because there might not seem to be one...).

So, here we are, 8 days since admission, still waiting and trying to fix what's wrong. She has improved, throughout all these tests, and probably just through the passing of time, her symptoms have changed from the original "stomach flu" style of symptoms with nausea to more of a PLE "rejection" type of  vomiting without the nausea. So, we're still here, unsure of whether those symptoms (diarrhea and vomiting) is PLE or if it's something else, but doing our best to help her heal, be comfortable, get some nutrition in her, kill the fever, and get her home.

Today is one of the best days we've had since we checked her in. She's felt pretty good, gone on a few walks, and actually kept food down all day! That's a huge milestone...it's been almost 2 weeks since that's happened. So, as I sit here telling this story, we're filled with hope and smiles today that we're headed a good direction. Maybe we're at the "tummy-tickle" part of the ride. I hope and pray in the coming days that the fever will go away with the antibiotics, and the food will stay down so we can all be home together again in just a few days.

We've had some really special times together trying to cope with the emotional and spiritual struggles that come with such an experience. We're so blessed to have my mom taking care of the other children so we can both be here with her. Steve's work has been so good to be flexible and just cover things so he can be where he needs to be. It's been such a blessing to have us both here so we can each take turns being strong enough for the other two. Steve had an wonderful experience with Sarah in the "Meditation Room", and Steve and I had a sweet healing experience on a walk and in the "Angel Garden". I can't imagine how we would be handling things without these incredible blessings. Between all the prayers and the opportunity to be here together, we've learned so many things and grown spiritually. We've learned more about the difference between wearing a "mask" and putting on your "game face", what "courage" really is, experienced and shared tender mercies, and studied and learned more about the Atonement of our Savior and His infinite grace.

I'd like to say that the roller coaster ride is over, and that we're finally getting off dizzy, giggly, and happy to be back on the ground. Not sure when that will happen, but on a day like today, I have hope and faith that it will be whenever it's supposed to be. Our loving Heavenly Father is in charge. It will be over as soon as He thinks it should be. We're where she needs to be to get the best care possible, and with all the love and prayers we've felt, I know He must be waiting to bring us great blessings.

Dixon Family Camping Reunion 2011

Dixon Family Camp (Reunion) 2011 was held this year at Albert Moser Campground near Preston, Idaho. The beautiful Cub River ran right through the campground, actually right behind our tent!

It has a lot of beautiful ground and tree foliage, and each campground was pretty secluded. Mom and Dad were in charge this year. We had a very fun 4 days near the end of July eating way too much yummy food, and playing our favorite games, Scum and Mill. David and I also taught the kids how to play Kick-the-Can, and we spent a lot of time reading and visiting while the kids played together.

This was Joshua's bug friend he found. He played with it for half the day, and it just sat there on this sweatshirt or his hand while he went about his business.

Steve's favorite past-time at camp

Joshua's "bug tent" he built... everyone needs a canopy!

Cousins Samantha and Macey wearing the "leaf hats" we made. The giant leaves were so fun!

Bryson, Kyle, and Joshua "protecting" the camp... Joshua helped them build these lethal weapons.

On Friday, we went to Bear Lake (one of our favorite places) and set up a day camp for ourselves between all the other people who also love it there. It was crazy busy, but as usual, we had a really fun time.

Josh and his "twin" cousin, Macey (that's only 9 days older). The rule of the day...the sandier the better!

 

Wake up, Rachel! Don't want to get roasted!

Swimmin' in the sand... (The water canons were one of Grandma's surprises. So fun for the kids and grown ups, too!)

Grandma's ring pops were a very special treat! (I have no idea what that white line is... probably a glare. I guess Nathan was  just inhaling the sunshine!)

We had planned to go into Preston on Saturday, but everybody was so happy hanging around camp that we ended up staying there all day. Sunday included the usual Primary and Adult FHE lessons. Mom and Dad taught the kids about the Atonement and the love of their Savior, and Steve and I taught about "Deciding to be Happy".

This is the handout I created, and the whole lesson is outlined on the card.

 We had a killer dutch oven potluck dinner that afternoon. Sunday night, we were forced to our beds early (around 8:30) because it started raining. It poured all night, complete with thunder and lightning and rained so heavily that everyone's tents leaked and Mom and Dad's gigantic canopy actually broke and collapsed. (But, Josh was thrilled to find his "bug tent" still standing!!) It was a mess cleaning up to go home that next morning, but everyone was surprisingly happy and helpful. It made me grateful to have such a loving supportive family that worked together until everyone was cleaned up and packed up, and we all left together. We were so muddy that all the shoes were collected in a garbage bag, and Joshua went home without pants (we gave him a towel, though)! We missed Shaunna and Eric's family (though they sent Landon and Branson from Alaska) and Michael and Krystal, who were unable to come. Here is the beautiful parting picture we took as we pulled out of the campground. It takes my breath away...

Joshua's Baptism

 

On Saturday, June 4th, my fourth child was baptized a member of The Church of Jesus Christ of Latter-day Saints. Since he was about 6, Josh has been so anxious. He was so happy that day that he could finally be baptized! Grandma and Grandpa Brown were here still from Sarah's graduation. It was a happy, calm, beautiful morning. After our traditional breakfast of rolled-up pancakes, we sent him in to get ready. I've never seen that boy get his church clothes on so fast in his whole life!

(See...? Everyone else is still their pajamas!)

After he was ready, he opened a present from us (his family) and was so excited, he could hardly stand it. He started reading 1 Nephi that very moment. He took his scriptures to the baptism with him and read in the car both ways.

The man of the hour... our future missionary!

At the church, we met up with lots of family and friends who came to share his special day. Grandma and Grandpa Dixon, aunts, uncles and cousins, home teachers, and primary leaders were there.

Daddy and Joshua

Our whole happy family!

Joshua with Grandpa and Grandma Dixon

 The Stake presented the baptism portion of the program and then we went to the room where the font is and witnessed his baptism. He was so happy, and hugged his daddy for a really long time (and that takes a lot... he's a very cuddly boy). While our "boys" got dressed, we were excused into our own little room where we waited for them and then had a little meeting for his confirmation. After our good bishop, Bishop Lothspeich, said some neat things about Joshua and the ordinance he had just participated in, Grandma Brown told some stories and shared her sweet testimony about the Holy Ghost. Then, surrounded by men that love him and hold the Holy Priesthood, Joshua was confirmed and received the gift of the Holy Ghost. It was so sweet, and beautiful words were spoken. I love, love, love that my husband (and equal partner in raising these amazing kids) is worthy and able to baptize and confirm my children. It brings tears to my eyes just to think of the gratitude I have that he is able to perform such vital ordinances for of our children. I'm so proud of my little Joshua and his sweet little testimony and desire to do what's right. He tried so hard during the weeks before his baptism to choose the right and be extra kind and thoughtful. Oh, how I love him!

After all the hugs, we came back home  to change clothes and... we partied!! Our new house and yard is so perfect for such events and it was an amazing beautiful summer day! We had pizza and pop (Joshua's choice) with fruit and treats. The kids played and the grown ups sat around and visited. It was wonderful, relaxing, and the perfect end to a perfectly fabulous day!

Aaarrrgghh! It's Captain Nathan and his matey, Uncle Richard.

Our littlest cousins Kassandra and Hailey

Grandpa and Grandma Dixon, Uncle David and Aunt Valaire, Mommy, Aunt Sheri, Gramdma Brown, Jared and Jeff

Grandpa Brown, Aunt Kristina, Shannon, Uncle Kelly, and Kassandra

Daddy, Uncle Richard, Aunt Kathy, Jesse Vincent (our junior home teacher) and Rachel

Resting and visiting. Grandpa Dixon is resting best! :)

Kassie loved her mommy's chocolate sheet cake!

We love our sweet Joshua!

A Car Wash, Butterfly and Two Life Lessons

Yesterday, we decided it was about time we washed our filthy cars. They're big cars... a blazer and suburban. The neighbor commented about how great it was that the whole family was helping since they're such big cars. Really, we thought it would be good to work together to teach our children that working together can be fun and that it helps get the work done faster, but I think there was a lot more playing going on than working. We did have fun, and all the kids were soaked. While the suburban was getting rinsed, a beautiful tiger swallowtail butterfly landed right on the wet hood. Its delicate wings immediately stuck to the water on the hood and it was trapped. The kids all started yelling and Steve came over to see what was going on. The butterfly was fighting with all it had ("freaking out" was what Joshua called it) to get free from that wet hood. Steve carefully put his finger by its front legs and it climbed onto his finger. He gently put it on a plant in the sun to dry. The poor butterfly kept trying to flap its wings, but one was so wet it stayed stuck to the leaf for a long time.

After about 15 minutes, its wings were dry, and it crawled to the shady underside of the leaf. I imagine it was recovering from its exhausting ordeal and trying to "catch its breath". After about another half hour, it crawled to the top, and spread its wings and flew away. We saw another one in the back yard later (when we were "having fun" weeding the garden) and Bryson was sure it was the same one coming back to thank us for helping.

Life Lesson #1: When Steve and I were wiping down the windows of the car, we opened the doors and wiped out the inside as well. I was amazed at how disgustingly dirty the windows were in the back seats and that I hadn't even noticed how filthy the car was inside until the outside was clean. We talked about how when things gradually get dirty, you don't even notice just how gross it was until it's clean again. Kind of like life... sometimes we worry more about what our outsides are like, and forget to take a look inside of our minds and our hearts and don't really realize just how neglected and dirty it is in there. If every little smudge, dust speck, and sticky fingerprint is allowed to settle and find a home, pretty soon you're awfully dirty and haven't even noticed. It reminded me how important it is to prepare myself to take the Sacrament each week. It's like a car wash. Well, more like a full professional car detail, actually. Everything wiped clean, sparkling and vacuumed out...even in the tiniest cracks. Add a little air freshener smelling of humility and gratitude, and you can't feel much better than that.

Life Lesson #2: I thought about that poor butterfly and how absolutely panic-stricken it must have been when it landed on the hood and immediately recognized its mistake. Sometimes we do things that seem like a good idea at the time, but immediately realize it wasn't a very good idea. Sometimes we panic, trying our hardest to get free, and the only way we can escape is by the hand that reaches out to our aid. The only way He can help us though, is if we trust Him, and step up on His finger where He can move us to a safe place. Sometimes our struggles are because of our poor judgment or bad choices. However, the kinds of struggles that are hardest for me to just climb on and trust Him are the ones that are simply a product of mortal circumstances. I know that He has the ability to put me in a warm, safe place to dry out and wait until I'm able to fly again. He has done that for me over and over again. But there are those few minutes, where I somehow forget what He can do, and just "freak out", trying so hard to make it on my own, and wear myself out. I learned something important from that butterfly yesterday. It didn't even hesitate to step onto Steve's finger. It may have been instinct, or it may have been desperation, but that butterfly knew what needed to happen to be saved. I hope that in these struggles of mortality, when the Lord's finger appears in my path again, that I will be willing to just step out and trust Him to lead me to the sunshine to rest until I am whole and can fly again.

Happy Birthday, America!

I thought it would be appropriate to take a second to share my thoughts and feelings about being blessed beyond measure to be an American and enjoy living in this incredible nation. I am grateful for the God-fearing visionaries who traveled across the ocean into this untamed land to start a new life. I am grateful for their faith-filled wives and daughters that wanted a place to raise their children worshiping the God they loved. I am grateful for the men that fought for the freedoms they hoped to gain by starting a new life here. I am grateful for the men and boys who died fighting and sacrificed all to ensure our freedom and independence. I am grateful for the men who, as instruments in God's hands, stood up for what they believed in and built this incredible country. And, I am grateful beyond expression for the men and women who continue to fight today. To keep us safe. To keep us free. To allow us to continue worshiping our God who blesses us abundantly in this great land. God bless America!

The First Day of the Rest of Her Life

So my sweet little Sarah, my fist born baby girl, graduated from high school on Thursday, June 2nd. It was an incredible occasion, celebrating her life, her accomplishments and her dedication to her education (especially this past year). As I thought about her experiences in high school, part of me longed for things to have been different. For her to have been healthy and felt good every day. For her to have had lots of really good friends. For her to have been involved in so many things, she didn't have time to study. Then, as I reflected on the things she's been through, especially in high school, I was so grateful that she recovered from the trauma of her PLE her sophomore year and became someone who was happy, well adjusted, loved to learn, smiled often, and accomplished so much, despite how awful she felt when she got up each morning. In so many ways, Sarah is my hero. I can't describe how grateful I am for her example of long-suffering and patience in her struggles.

Just look at that smile!

Here's the proof!

Grandpa and Grandma Brown came from Utah to celebrate with us.

Grandma and Grandpa Dixon were also very proud of our girl.

She had a sort of break-down after graduation when we got home after commencement. She spent a lot of time talking with her daddy (she's always been a daddy's girl) and expressed her fears of the future. She wants to be a kindergarten teacher when she grows up, but doesn't know how, when or where she should accomplish that. She also really wants to be a wife and mother, but has so much that she needs to figure out before she's ready for that. It's scary... looking down the road, and not knowing for sure if the pathway you want to take is the one that leads to where you want to end up. Like she said, this is the only life she's ever known... going to school and learning each day. Now the possibilities are endless and sometimes frightening. But, like everything else in her life, she has started walking forward (even on swollen ankles) and headed down the path toward the "rest of her life".

First Friday Art Walk (in April)

Sarah and Rachel were invited by the owners of Alston Ink in downtown Pocatello to be their featured "artists" at the First Friday Art Walk on April 1st. They were invited by Stephanie and Neal Alston shortly after the article appeared in the paper about Rachel using her chocolate business to earn money for her leadership conference. Sarah and Rachel spent hours during the last week of March making mints for free samples and a whole bunch of peanut butter filled eggs, bunny suckers and solid chocolate bunnies. They set up a cute display at the front of the store and waited for people to stop and try (and hopefully buy) their chocolates.

They learned very quickly that you have to be pro-active to get people to stop and talk to you. A friendly smile just doesn't cut it. (Rachel was pretty used to it from the Chocolate Extravaganza, but we made Sarah sit on the outside until she invited ten people to try some free chocolate.) We also learned that the purpose of the Art Walk, besides to get recognition and business for local artists, is to give people in the community an opportunity to spend some time downtown and learn about the shops and stores there. Here's where Stephanie graciously stepped in and took over. She was wonderful. She obviously knew what she was doing, and stopped many people to brag about "these two high school students that have their own business of handmade chocolates". It was a great tactic. Most adults were impressed by my beautiful little entrepreneurs, and at least tried the mints and congratulated them on their business venture. A few even recognized Rachel from the article in the paper. Many people loved the mints so much they also bought Easter treats. Then, Stephanie would ask them if they've ever been in her shop and invited them in to show them around. The girls and I ended up having a nice time together, and Stephanie invited them back later in the summer, when business would be slow. We'll see if they're up for that again. They're not sure, but earning $76 in one evening was pretty nice!

Hard Decisions

When I was younger, I hated having to make decisions. The good vs. bad ones were pretty easy. It was the good vs. good that were the hardest. Those are the times I wish I could be in two places at once. My wise mother used to advise me to make those decisions with an eternal perspective. She would ask, "In ten or twenty years, or after you've died, what will matter most?" That usually helped me decide which good thing was the one I should do. Now, as an adult, the choices have gotten a little harder. For example, do you choose between your daughters or your son? Do you spend quality time with your girls at the Brown Girls' retreat with extended family (Grandma, aunts and cousins), or go with your son on his 5th grade cross-country skiing field trip? What if you promised your daughters you'd take them, and told your son you were excited to go skiing with him when it was time, only to find out a week later that both events fell on the same day? The days prior to March 4, 2011 were filled with much contemplation and near-agony for me. They brought me to one of those hard decisions I hate. Prayer didn't seem to help in this case, because either choice was a good one. Relying on Steve to fill in for me didn't help, because he had meetings he couldn't get out of. I even tried to figure out how to do both, but the events overlapped several hours, and just really couldn't work it out. So, I was stuck, making a good vs. good decision, and even my mother's eternal perspective trick didn't seem to help.

Ultimately, I decided to take the girls. I had promised them, afterall, and they had been looking forward to the time out with the "girls" for weeks. My sweet Bryson, with his very unselfish spirit, understood; just as I knew he would. He was disappointed, but he realized what I did... that I couldn't break my promise to his sisters. I had a wonderful time with the girls, and Bryson called me right after school to tell me all about his fun time.

Brown Girls weekend... we made cards, button rings, and wooden nativities for Christmas gifts. We talked, played "Just Dance" on the wii (that was hilarious), and watched a movie. We laughed, ate Korean food for dinner and went to bed way too late. The next day, we worked on more cards, lounged around in our jammies til noon, and ate more yummy food. I had my first taste of Cafe Rio (and loved it) and made some special memories with my daughters and my other wonderful sisters, aunt and mom. It was so fun, and always a treasured time together.

Cross-Country Skiing... Bryson found a friend and his dad to hang out with for the day and they had a wonderful time. They had a nice day, and the weather was nice enough that he stayed warm. He said they saw some pretty things at the Nordic Center and played some fun games. He liked cross-country skiing, but it was harder than he thought it would be. He liked the snow shoeing that we did last year a little better. He was happy, and very, very tired.

When the weekend was over, I realized that it was what it was, and once it was over, things were okay, and would have been, no matter what I would have chosen. Sometimes the outcome doesn't matter so much as how the decision and follow-through are executed. I've decided though, the hard decisions that matter, the good vs. good ones, that make a difference to someone one way or the other, the ones where there's no compromise, no divine direction, and no difference in the eternal importance... I still really hate making those.