Moving on

As many of you know Stacie has moved on with her own special blog and pretty much quit blogging here. I've been fairly pre-occupied with getting our home finished and whatnot so i haven't blogged either. I've considered picking this up again, just for our own record, if nothing else. I've really been working on not procrastinating things though, so I think I'll go work on some other things and maybe do this later if I get some time.

eight is great!

Elsie got baptized on saturday. It was a special day.
She had many family and friends come to say congratulations and we were so thankful to all those who came!

Jake teased a couple of days before her baptism that he was hoping her receiving the Holy Ghost might settle her down a bit :). It has just a little but we do love her spirit and energy and comedic relief she is to our family. Love and Kisses to you Elsie Jane! We are so very proud of you!

Three down, two to go!

Early Riser

Rhen has always been an early riser. He's up by 6:30 most days, sometimes earlier. In fact he went through a tiresome phase where he'd wake up at 3 or 4 in the morning, ready to go for the day. He'd refuse to go back in his room and throw a crying fit if you tried to make him. Of course we didn't want him to wake everyone else up so we'd have to get up with him. He finally got over that, but still wakes up early. Most days he'll walk into our room and put his face right next to mine and look at me until I wake... or he'll walk in and shove a cup in my face and say, "dad! get me juice!" Recently he's finally caught on to manners, so he shoves the cup in my face and says, "Can you get me some juice please dad?" That's been a nice change, but i'd still prefer other methods of waking me up. I really haven't used an alarm since he was born because I'm usually up way before I need to go anywhere.

This morning he was up again at about 6:30. Stacie's gone to girls camp so I was laying in the bed alone. Actually I think it's lying in bed isn't it? Lie-ing? Ah, who cares.

Rhen quietly walked around to Stacie's side of the bed. I could hear his shuffling little feet and thought it odd he wasn't right in my face as usual. I mumbled, "hey buddy, you sleep well?"

"ya, but i didn't have dweams," he said, though i'm not sure he understands what they are.

He crawled up the bed, onto my pillow and spooned my head and shoulders with his lanky little self, chin resting on my forehead. He wrapped his arm around my neck, hand on my chin, little fingers stroking my unshaven stubble. Then he gave a little squeeze and said, "You're a really good dad."

That made all the cup-in-face shoving worth it. I reached up behind me and hugged him for a minute, and then...

"Dad, I need juice."

Doesn't Hurt to Ask Questions

Putting Rhen to bed last night...

Rhen, "dad, can I have some more milk?"
me, "Sorry no, you'll pee the bed if you drink too much before sleep."

Rhen thinking...
"Dad, when i am done with this milk... If i cry really bad for a while will you get me some more milk?"

chuckling, "No, sorry buddy. No more milk tonight."

"but Dad?!"

Rhen, calm and with reasoned determination, "Well, when you were gone to wyNoming mommy gave me milk a little bit. But i wanted more so I cried really loud for long time and she got me more milk."

gotta love how the little ones figure out how to play their parents.

Threek

Tuesday was a 'mystery dinner' for activity days for Chloe. The location of the activity was a mystery so after driving around trying to find it, Chloe and I decided to have a dinner of our own instead. it was a fun date and Chloe was excited to tell me what a threek is, a fork with only 3 tines. As usual she was super hungry, but hardly ate. But it was just fun to hang out.

Stacie, The engine that could.

Stacie just ran the Ragnar this weekend with Spence, Josh, Jena, Chad, Nathan, Nicole, Melissa, Brett, Brian, Julia and Stacy. Most of you reading this probably know what the Ragnar is, but if you don't it's a relay race (188 miles or something) from Logan to Park City up and over all the mountains a long the way. She was nervous about it because she hasn't had a lot of time over the last few weeks to run hills. She had some really tough legs but ran it well. She was like a little choo-choo train plugging along at a very consistant pace no matter the incline. It was very impressive, but she won't admit it so I am.

Spence trained for 3 weeks and was pretty amazingly fast. He took the legs I planned on running before the nasty shin splints presented themselves. He did them better than I would have, and I was running for months beforehand. He has a natural gift for running I think. If you watch him run he looks completely comfortable like it's the easiest thing to run up a super steep hill. At one point after about 7 miles of running he grabbed a cold dewskie a bystander handed him and pounded it as he ran up a super steep incline. Classic Spence.

Everyone else did great as well. Six of us were in one car and the other 6 in another so we only had everyone together for a few minutes during the whole 2 days. Josh and Stacy were in the other car so I'm not sure how their legs went, but their team always showed up at the exchanges earlier than we planned. Sounds like they had a great time too.

My Perceptive Wife

For years now I have had this little "soul patch" as it were under my lower lip. It's a pretty subtle expression of manhood since I am not a hairy man and just about the only place whiskers grow on my face is just under my lip. Even there it's sketchy.

Back in January I shaved it off. Figured i'd go for clean shaven look to mix things up. Today, June 16th, while consuming a Turkey Pesto at Great Harvest in the mid afternoon Stac looks at me puzzled and says, "Why did you shave your patch, I liked that!"

too much, darling, too much (the incredibles)

Just because you get a diagnosis and get treated, does not mean you are free from worry and stress. We come home and I have to be the home nurse, give her the meds, flush her line and worry about why she isn't eating and looking pale. Saturday was a rough day for me.
So when we returned home for the hospital we got the delivery of her medicine for her line. There wasn't any heprin in the delivery so I had Jake run out in the pouring ran to stop the van and asked about it. He said the new lines now days don't need heprin, so she should be fine. In the back of my mind I thought, I still need heprin, I wasn't feeling comfortable without it (heprin is used after a saline flush, through the line, to lock the line so it won't get blocked. It has called heplock). I just went with what he said. We did fine until saturday. Jake was out of town to wyo (of coarse this has to be the case). I pushed and pushed, and no medicine would go in, and no blood would come when I pulled back (which is suppose to). I was frustrated. I called ICS at primary and they asked if I had done this and this, and I had done this and that. It was inevitable I had to call home health care. I have not had awesome experiences with IHC home health care, the politics that go into health and insurance at times is a joke, but I needed some heavy duty heprin to unblock this line.
When the medicines were delivered the night we got home from the hospital a nurse from home health called and wanted to show me the how to care for the line. I told her I knew all the procedures and wanted to save her the time and energy to come out to my house to show me what I already knew. Well one thing I had forgotten was that I had to jump through their hoops to get medical care. I wasn't reminded of that on this night, I was reminded on saturday morning.

I finally got a hold of the home health care on call nurse. I told her my situation and she explained to me that Chloe was not in their system, there is nothing she can do for me and I would need to go the the ER to get her meds started. I explained that I should be in the system because they gave me drugs and were delivered to my house. Again she told me she couldn't come out to help because Chloe was not entered as a currant patient. I was being denied health care? The ER is 200g's, plus every time we go there we are sent down to primary because they either don't know what to do, or that Chloe is just a special situation. I didn't want to go there. I called ICS again and told them the home health won't come to my house. Jake was gone, was I going to have to go down to primary, get it taken out, put a new one in? Leave my kids here? Was she seriously not going to come to my house to help me get the meds started?

I told ICS nurse about the heprin situation, and she said some lines still do need heprin and some are different and I needed the heprin. She called home health care while I was waiting and calling Jake letting him know and taking care of kids and trying to push the saline through her line, and nothing happening with her line. I got a call back after a few minutes from the on call nurse, I heard her typing and she said "OH there she is." But you told the nurse you didn't need her the night you got home from the hospital, you said you knew how to take care of the line. YOu have to be entered in and sign all our paperwork to get our services." OK, yes, I did say those things but in my defense (which I did not inform her of) when she got out of the hospital as a bone marrow patient and needed home health I didn't have to sign all the papers, I had forgotten it has been three years since I have used home health, and to be honest I hated to admit we needed it again.

We got things scheduled and she would come then ironically right after I got off the phone with her, I tried the line again and got the medicine to go through, but slowly.

To make a long story short (too late) the nurse finally came, did all the hour long paper work and went through all Chloe's medicine she wasn't on anymore (boy she was on a lot of stuff back then) pushed the heavy dose of heprin through, I waited two hours to settle and it works great now. Chloe is on the services of home health until she get her picc out, and I have heprin to flush it with. There is more stress to this story (little things going wrong) but if I listed it all this post would be too long.

Nothing is easy with five kids, but having this happen and doing it by myself was a little too much for me, but you can see from the picture her face is getting way better. I think she will have some scarring on her chin (bummer) but how much I am not sure. Her line is working and dressing was changed and now today I can breath.

ps my other kids didn't end up going to camp hobe because the form we need to fill out for them to attend asked specifically if they were exposed to chicken pox, and of coarse they have so I didn't want to risk going and being turned away, or exposing anyone else. Next year they will go.

the 411

While I was at the hospital I ran into one of Chloe's BMT doctors. She informed me that a lot of kids who take the medicine Acyclovir for an extended amount of time (which Chloe did, for two+ years) studies have shown that 6 months to a year after they have stopped taking them, they develop shingles (pretty ironic since Acyclovir is the drug to get rid of them). The doctor checked her chart and, sure enough, it is that time frame for Chloe . So that caused the shingles to break out and having a cord blood transplant, her new blood didn't realize her body already had the chicken pox, broke out when the shingles came. She had a pretty severe case I must say and that stinking infection wasn't helpful either. She got hit with three big whammies.
She feels lousy today, I can't get her to eat, the drugs make her stomach hurt and although the shingles are getting better they look like bloody scabs, so although it is getting better, it doesn't "look" better. I am hoping they don't scar. That would be another whammie, scarring on her face. Only time will tell I guess.

We would like to thank you again for all your prayers and thoughts on Chloe's behalf. We are very grateful for them and the comfort they brought to us when we were a little nervous about this crazy week we have had. I don't realize how stressed I feel until I get home, I've had a headache everyday since I got home and my body is worn out. So the prayers are much appreciated.

The good and the bad

The good...we are home!!

The bad....She can't go to camp hobe : (


She was really really sad when the doctor told her that. She has to be on iv antibiotics at home for 10 days and I think they do that at camp hobe. I think she will still be a contagious and we don't want to spread it to any immunosuppressant kiddo's. She will be able to go next year, but she wanted to go this year because her great friend Jocelyn is going to be a counselor. We were really done about it. Timing in life sometimes makes me wonder.

Funny thing, I posted the other day that I was so excited about Chloe wanting to do a craft, so I hurried and got something for her to do not thinking at all. Other ICS patients would not be able to use any of the crafts unless they were all cleaned. I choose beads, and took most all of them available so she could have a selection. Well we are now a proud owner of a crap load of beads. Our nurse said,"I don't wanna clean all those beads, why don't you just take them home." That is what we did.

So the good news...we don't have to buy beads for awhile

bad....we will be making book back chains, necklaces and bracelet and whatever else we can think of for a long time ; )
could be worse.


Good news...she got to sleep in her own bed

bad news...we have her space balls back for iv hook up every 8 hours, which brings us reminders of more stressful times.





Good news...her shingles are starting to scab

Bad news...they are starting to itch!


Bad news.... I forgot to hook her up after 8 hours like I was suppose to (shoot)

good news...we don't have to to a hook up at 3 am


I always need some down time when I get home from the hospital, I get into survival mode while at the hospital (be strong, be strong, it isn't that bad being in a small tiny room with a sick child and telling her she can't go to camp hobe, and telling her I don't know how long her face will look like that). When I get home, it all crashes down and makes me sad, so I mostly hibernate for a few days, and just breath.