Thursday, May 29, 2014


So shortly after everyone left (like, the DAY everyone left) I spent the day trying to get in touch with our GI for ultrasound results and lab results. I'd spent two days trying to get those results from that dr when I finally decided I'd had enough. Peter was looking jaundiced, and I didn't want to wait any more. Off to the ER we went. I figured they'd have the results, they were in the same network. And I anticipated a late night at the hospital.
In the E.R.

 Instead we got four days. Four days of tests, blood work, stool samples, the works. Peter was not amused.
 He did, however, really like the glove balloons.
 It took 24 hours but we were finally moved to a hospital room where he was kept in isolation.
 He was admitted for acute anemia with a hemoglobin at 6.6. After flooding his system with IV fluids they re-did the test and his hemoglobin had dropped to 5.6 In an hour. Yikes. There was talk of transfusion, the blood bank got to work finding a match for him, he got stuck a million different times... We saw our GI doctor who asked why we hadn't called him (GRRRRR!!!!!!!). We found out that his reticulocyte count was abnormally high: 12% instead of the average 1-2%. They wondered if he were bleeding through his GI tract somewhere. So they did this test:
 Nothing. They started calling him the Conundrum Kid because he'd have all of the symptoms for one disease and then the key symptom would be fine. It was a mess.

Finally in our own room, Day 2.

On top of all of that not one dr actually sat down with me and explained exactly what was going on. They used these big words that meant NOTHING to my frazzled, tired brain. And then they'd turn to each other and whisper different things. That drove me nuts.
 Poor little guy got to the point that they just could not draw any more blood, though. He had nothing, and his veins were so incredibly flat. He'd scream every time he saw navy scrubs because he knew he was going to get poked, but there was no helping it. By the last couple of days they could not do any of the follow up tests they wanted to do.

 I kept trying to be patient, but I only have so much patience when it comes to drs not communicating with me. Fortunately I had amazing nurses, and they were always more than willing to help me understand what was going on and explain what tests they were doing and why.

I also have to give a shout out to our amazing bishop, Relief Society, and my visiting teachers. The bishop visited to make sure we had things we needed, and then got the ball rolling with the Relief Society president so we would have meals at the house and people to watch the other kids while Jonathan worked. Then my visiting teachers arranged a ton of things at home and brought me an overnight bag (remember how I'd only planned on a late night at the ER? Yeah. I needed clothes. Badly.).

Day 3: We're tired of the food and the four walls.

 Thursday evening, 48 hours after we'd been admitted, Jonathan was able to borrow a car and come visit us. It was incredibly refreshing to have Jonathan come and support us. He was only there an hour or so, but it was a much needed hour. We made plans for us to switch places the following night if Peter were still there.

So Friday came and went, Jonathan and I switched (hardest thing EVER, by the way. Leaving my baby behind at a hospital an hour from home about made me sick). I spent Saturday making two weeks worth of freezer meals so I could be prepared if we had to a) stay at the hospital longer or b) go back into the hospital at some point. Another big shout out to my visiting teachers and RS president who helped me get those meals together.

Saturday Peter was released. I fought it, actually. They had not been able to confirm that Peter's hemoglobin was on the rise, and I was afraid we'd end up right back at square one. Bur they were sneaky and dodged Jonathan's request for another CBC until they'd already filled out the discharge orders and had him released as a patient.

Come to find out a week later Peter's hemoglobin had dropped again.

Peter has hemoclytic anemia. Somehow his red blood cells are being destroyed either through an internal bleed of some sort or his bone marrow is making bad blood. We are on the top of the wait list at the hematology/oncology department at a different hospital (I really didn't like the experience we had with this one) with a regular appointment scheduled June 9th.

Peter also has iron-deficiency anemia. After just a week on iron supplements we found out today that Peter's hemoglobin is at 10.4!!! The doctor was amazed we saw that kind of increase in his red blood cell count, we really aren't supposed to see those kind of results until he's been on supplements for a month. We are hoping this a good sign and that it leads to a full recovery soon.

Jonathan, ever the wet blanket, reminded me today that this could be a fluke. He's right, the doctor said it was very unusual that his hemoglobin levels jumped up 4 points in a week. That is incredibly weird. But I'll take it. I know this isn't done, I can't shake the feeling that there is something more, but that's why we are going to the blood/cancer clinic. We're going to figure out this beast before it gets the best of us.

Wednesday, May 21, 2014

Happy trip

I had been looking forward to Holly and Henry's visit since Christmas. It was a long wait, but it was so fun! Henry is a doll, and Holly is a fabulous mother.

Monday, May 5, 2014

Merrily we roll along

 We decided to make a quick trip to the park last week. On the way we grabbed one of David's friends and brought him along to the park with us. Thomas likes fishing and has a house that backs up to this pond. He fishes a lot and asked if he could bring his pole along. Why not? :)
 David thought it was pretty neat. He'd like his own pole now so that he and Thomas can go fishing together. We might be able to arrange that... He does have a birthday coming up after all...

 Thursday morning was Peter's appointment. Kid was really tired after that blood draw. Turns out we might have to go back and do it over again. I really hope not, but something went wrong with the celiac test and it came up with inconclusive results. The lab is going to try the test one more time with the blood they have but if there isn't enough we'll go back and do another draw and hopefully that one will give us some results. In the mean time I'm trying to make him drink TONS of water and pedialyte so that we can get him well hydrated for another blood draw. Yeesh.

 David had his Space Derby last week. He was in the first heat and blew everyone else out of the water! And then, for some unexplainable reason, his rocket did terribly after the first couple rounds. Turns out one of the rubber bands had come off the hook on the inside and was gumming up the works. We only figured that out at the very end of the night. Oh well. It was fun anyway.

 We got a mower! And old school reel mower. It takes some muscle to use but is light enough that David can push it. He was asking all weekend for a turn at the mowing. Jonathan decided to let him. We'll see how long that lasts. ;) We're glad to have the mower, though. That yard is going to start growing a lot and we needed something quickly. I'd been monitoring Craigslist for months waiting for one in our price range to pop up. I learned quickly that if I didn't contact the owner within a day of it posting it was gone. Hot ticket items, who knew? But we finally snagged one and are pleased with how it works. It came with a sharpening kit, which is nice.

 Did something fun with my hair for church: crown braid! I've NEVER done that before. And my hair has been too short since Jonathan and I were married. It just barely worked, but it stayed in the whole time. Yay. I had to do something, church was really the last place I wanted to be yesterday. But that's another story.

Jonathan was asked to sing in a mens group for Mother's Day. They practiced after church. "Consider the Lilies of the Field". I might just have to leave when they perform it this next week. There's this one line at the end... "Consider the sweet tender children who must suffer on this earth..." Uh... Yeah.... NO. Not making it through that song.

We got some of Peter's test results back. As I said earlier the celiac test was not done correctly so they are going to have to re-do that one. His thyroid is fine. The CBC showed low hemoglobin and hemocratic levels, so he's anemic. It isn't too bad, but it is low. It explains his poor coloring and fatigue. I forgot to ask about the WBC. I'll call again tomorrow.

I went to the temple the other day. Wanted to not think about Peter for a little bit. Of course the name Peter kept coming up. Figures. So I was actually a wreck the entire time. A sweet sister came and found me later and said that it was okay to be emotional at the temple, it was such a happy place. I really wanted to yell at her. I'm not happy. I'm quite mad. She didn't know that, I'm sure that a lot of people have happy tears at the temple. She just assumed I'm one of them.

Sunday was equally difficult. Last place I wanted to be was church. I'm feeling anything but spiritual right now. I'm trying. I am. It just isn't happening. Peter has been sleeping rather fitfully the last few nights and I wake up every time he starts crying. So thank goodness it was my co-teacher's turn to teach our six 3-4 year olds. Someone put wiggle juice in their cereal that morning because they were bouncing off the walls. All of them. And crying, and sniffling, and whining. I got home and was absolutely wiped out. Peter and I took naps. Four hours later we got up and had dinner. And I was still tired. Ha!

I am grateful for the outpouring of care that has been shown to us. We have so many people praying for us, thinking positive thoughts for us, checking up on us to see what can be done to help. Thank you thank you thank you. It means the world to me. I'll know here soon just what we need by way of help, and I promise I'll keep everyone posted.

And prayer. *sigh* My wise friend, Chandler, counseled me to pray for comfort and peace until I can pray "Thy will be done". She's smart, that one. As far as BFFs go I think she's a keeper. I'll give that a go. Maybe it will help me sleep better. That and sleepy-time tea.

Friday, May 2, 2014

The devil in the distraction

I achieved the life-long goal of beating Bowser in Super Mario World. I will admit to having spent far too much time working my way through each level and finally getting to the point that I could beat Bowser. And I'll admit to saving my game mid fight with Bowser so I didn't have to play all the way through the castle to get to him again. And I will admit that it was also just a way for me to kill time without having to think.

I've been doing that a lot lately.

Peter's appointment went well yesterday. I suppose. It wasn't what I expected, but then I'm not entirely sure what I expected. We talked to the doctor, he checked Peter out, felt his belly, tried listening to his lungs and heart but Peter was starting to panic by that point. Dr commented on Peter's heart murmur, swollen belly, pale features... I showed him the many poop pictures I have saved on my phone. We talked foods, Andi's gluten sensitivities, Peter's fatigue and activity level. He feels that celiac is the best bet. He ordered a celiac blood test, if that is positive we'll move on to the scope. Then he said if that test is negative it is probably just "toddler diarrhea". Toddler diarrhea is usually caused by a child drinking excess fluids and usually resolves itself as a child gets older. I'm a little skeptical on that one. He also ordered a CBC and thyroid test as well as an ultrasound to check what we think is a swollen lymph node on Peter's abdomen and an enlarged liver.

Next was labs. That was a nightmare. Peter was an easy stick, they got a vein right away every single time. But he just wouldn't bleed. It was especially thick and ran like glue. It took under a minute for his blood to start clotting. Turns out he is super dehydrated from almost ten weeks of diarrhea. Despite all the extra fluids he's taking in he is still pretty dry. Not bad enough to take him in to the hospital, but it is definitely something that we are watching. So it took four sticks, one in each hand, right arm, and right foot, three nurses, and a half hour to get all of the blood we needed for the tests. Poor little guy was exhausted by the time we left. He slept on the way home and then took a couple of naps during the day.

The doctor told me not to worry about the big, bad, begins-with-a-C diagnoses. He said that more often than not these things are totally benign. Although that's why we are doing the ultrasound, we want to make sure everything is working and looking the way it is supposed to on the inside. So of course it is on my mind.

Deep breaths.

And lots of distracted cleaning. Scrub the stains, hunt the germs, wipe the dust. Concentrate on the task at hand.

Go for a run. One foot, then the next. Breathe, step,  dodge the goose gifts. Concentrate on the task at hand.

Keep the kids fed, play, read a book. Snuggle, hug, kiss. Soak up the smells, even the stinky ones. Concentrate on the task at hand.

Prayer is a dangerous thing. Acknowledging my fears, doubts, concerns leaves me too much room to think and feel. I've been avoiding prayer because I don't like the side effects.

Google is a jerk.

Thursday, May 1, 2014

Mother's musings

David -

He is such a wonderful helper. While grocery shopping today he said he didn't want to ride in the cart because he wanted to be my helper. :) He works so hard in school, and he's doing so remarkably well. Jonathan is amazed at his reading skills. Jonathan couldn't read until he was 13, he just never mastered the skill. He'd spend all day reading but it just never clicked for him. He is so grateful that David is not struggling the way he did as a kid. David is also quite the writer and enjoys inventing amazing adventures about robots and monsters and carnivorous plants. He then draws intricate pictures to accompany his stories. His teacher regularly gives him extra writing paper to complete his assignments because he runs out of room writing about the things they are learning about. She reminds him how on his first day in this new school he didn't want to write anything. In fact, he cried and took considerable encouragement. He wrote four words that day. Boy has that changed! :)

David adores cub scouts and the projects we do there. He designed his space derby to look like a McDonald's rocket that would drop hamburgers for people. It was pretty hilarious. Especially as we haven't been to McD's in such a long time...
He'll race it tomorrow evening. Hopefully it fairs better than his pinewood derby. :) 

David works hard to collect cans from around the neighborhood and at church to support his mouse and his budding model building hobby. He also wants to save for a new bike. That will probably take a while, but with his determination I can see it happening. Though he doesn't much like spending money because it takes too long to earn it and he doesn't like seeing it all disappear so quickly. Smart kid.

Andrea -

She is such a girl. Tea parties, jewelry, fancy dresses. It is a rare day that she finishes the day in the same outfit she put on after getting up. She especially loves leotards right now, though most of them are especially small after this latest growth spurt. And heaven forbid we suggest she wear pants that aren't leggings. Getting her into denim is nearly impossible and only happens when every other option is gone. She's worn holes into most of her leggings now, too, which is a shame because it really is hard to keep her looking presentable without them. We tossed several pairs last week that were literally tattered with no way to save them. I've been doing a lot of sewing lately, so trust me I tried to save them.

Andi is also one of the most stubborn and whiney children I know. She often reminds me of my youngest sister who would just badger you over things until you caved. There are days that Andi will follow me around the house repeating the same thing over and over. The other day it was that she wanted to watch a movie upstairs (on the computer), but I wanted to listen to church music upstairs. I turned a movie on downstairs but that wasn't good enough. Two hours later she was still crying "But I want a movie upstairs!" non-stop. I'm not sure she even breathed between repetitions. She never got to watch her movie.

Another Emma-ism: Emma's answer to many road-way woes is "Just honk!" The other day we got stuck on a two-lane road behind a car that was trying to turn left into a parking lot. As we waited Andi became more and more impatient. Finally she said, "Ugh, just HONK!"

Gran sent Andi a pair of pretty gloves to go with her Easter dress this year. In the package was a complementary package of fake nails. Andi was just delighted over those fake nails!
Somewhere there is a picture of me that looks remarkably similar to this photo. When I find it I will do a side-by-side comparison.

Someday I hope I will appreciate her stubborn streak. Right now it can be tiresome, especially after two hours of the same sentence over and over and over again, but I hope one day it will serve her well. I hope she will be strong in the right ways. I want her to be determined to pursue her goals and dreams without feeling ashamed. I want her to be brave and unrelenting in the face of opposition.

Peter -

He is such a happy child. I'm grateful for his pleasant and calm demeanor. Now if we could just get his poor digestive system all sorted out.

Peter has learned how to blow on things. If we say anything is hot he starts blowing. If I'm working on something that will go in the oven he starts blowing. If it was hot at one point he starts blowing. I need to teach him to blow out birthday candles...

He is a very resourceful little guy. In an effort to prevent him from climbing onto the counters and stealing food we put the chairs on top of the table and lay Andi's underneath the table. Well, he's figured out how to set the chair back up and will climb all over the counters when given the two seconds to do so. Today he scraped his chin falling off a chair he'd set up while I was cleaning Andi's room. We also lock all doors because he WILL just walk outside if they aren't locked. I've done the whole search-for-a-lost-toddler-outside thing with David and don't want to do it again. Everyone knows to lock the doors and put the chairs down.

Peter loves to take baths but is terrified of the shower. Last week Andi went to take a bath while I was baking cakes. I strapped him into his high chair and gave him a banana and got to work on making cakes and doing dishes. A few minutes later Andi is yelling for me. I turn around and Peter is GONE. Turns out he'd really wanted to join Andi in her bath.

He loves peek-a-boo, this little piggy, and Doctor Who. He loves singing and dancing and it really doesn't matter what song is on he will stomp out a beat. Jonathan turned on some Gregorian chants yesterday and Peter nodded his little head along with the music. He has adorable curls that turn into snarls by the end of the day, and a fro if I don't wash it after two days. I was determined to get his hair cut the other day and told Emma I would allow her the honor of giving him his first hair cut when she came up. And then I washed his hair and giggled over his darling curls and declared that we'd never cut those little locks. And then he took a nap and he had a rats nest on the back of his head.

Peter played so well today while he was awake. He got up at 7:00 a.m., then was ready for his first nap by 9:00. He woke up at 12:30, had lunch, played with his toys, read a book, and then was rubbing his eyes and ready for his second nap of the day at 2:00 p.m. He woke up at 5:45, we went to the library, had dinner, picked up a lawn mower, and he was more than ready for bed at 8:00. That's a total of almost six hours that he was awake today, something I would expect from a newborn but is definitely not normal for an 18-month-old toddler. I am really hoping that tomorrow gives us some answers on Peter's health.

I know this is probably getting old, but prayers for Peter would be greatly appreciated.