Getting ready for the walk!

Today is going to be a whirlwind! We're still painting the new house, Luke will be around this afternoon to help me with a few things on the old house (it might be shown Saturday, please pray they fall in love with our little cottage by the golf course)! We are going to meet good friends at the park for a picnic lunch, Marie is working on pulling the clip out of her hair for a second time (I love how naughty she is!) and there's a ton going on.

But, we're excited to head to the Front Range tomorrow for Landon's Hope! It's not too late to join us in Windsor on Saturday:) Follow the link to join our team, Our Miracle Marie, and celebrate Landon's birthday! Hope to see you there!!!

Need to brag on my Rie...

I just got Dr M's write up from Marie's recent neurology appointment. His overall impression is, and I quote "Leigh's Disease with actual improvement in neurologic picture".

GOD IS GOOD!!!

Rarrwww...

I am on hold, with medicaid. They are experiencing a high volume of calls. Poor them. Actually, poor them. I have a list of difficult to answer questions. I am getting pissed that it takes so long just to get answers to questions like "how long?" "who do I talk to?" "why when I told you I needed this did you not tell me that it was a service you offered"?. Things like that, questions I am learning people do not like to swear. *sigh*

So, I'm spending my time reading baby names. Mmmmhmmm. We'll keep number 3's name a secret until arrival but I can share some of the ones that I liked that Luke totally shot down.

Wait a minuet! Holy cannoli! A very agreeable woman just gave me the name and phone number of the person I need to talk to, to ask my very difficult questions! Being annoying and persistent pays off:)

So, in no particular order, the names Luke shot down, then I need to make a phone call:

• Karsten
• Abigail
• Maeve
• Marlee
• Crosby
• Jane
• Arabella
• Lucia (I know, it's bizarre, but I like it)
• Boaz (he was a farmer, I thought this would appeal to Luke, I was wrong)
• Bianca

Because I might have been sort of a downer yesterday :)

Jo: "Can you help me?"
Me: "Yes, what is it?"
Jo: "This". Tiny hand holds forth a half dressed Cinderella barbie, one arm in her dress, one out. She sighs and blows her bangs off her forehead.
Me: "Oh, that. Give her here".
Jo: "Thank you".
Me: "No problem, Barbie arms aren't really made for putting on dresses are they?"
Jo: "No, you have no idea how stressful that first arm was!"

At the end of another long week

Time is flying by right now. It seems like all our waking moments are spent playing, running, thinking, struggling... looong week.

The house is coming along, drywall is done and textured and waiting for paint. Unfortunately a plumbing leak in the guest bath required that a newly patched ceiling come down and lots of work be done but luckily Luke was able to do the plumbing himself. It should be ready for paint by next week.

Josie's last day of Preschool was Wednesday and we had a picnic at the park. Very cute to see her with her classmates. She is missing school already but with Vacation Bible School next week and gymnastics and hopefully some swim lessons starting soon she'll be busy before she knows it.

Marie's doing great, her allergies are not fun, but otherwise she's busy being two. Her attitude is showing more these days and I'm grateful to see her being a stinker. We're outside as much as we can be and she really loves that. She also gets so excited when it's time to go somewhere, she loves being out and about.

I've spent the week researching Medicaid stuff and came to the conclusion that we might be on the wrong waiver. Unfortunately, what I think is the right one probably has a waiting list of at least a year and I was told there are no exceptions, even if you have a terminal diagnosis. We're lucky to be on the Pediatric Hospice Waiver and have Medicaid as a backup plan, but the waiver doesn't have any services we need (insurance pays for hospice) and the other waiver I've found could benefit us. I'm becoming totally neurotic. I've spent at least two hours a day reading, bugging people, learning Medicaid, trying to find a CNA class in even our extended area that I could get into, and generally feeling like a dog chasing my tail. It is so stressful and frustrating, and to fight for your child and find little doors only to have them slam shut is just. tiring. Advocating is tiring. Seriously. It's my job, it's worth it, and for Marie I would do anything but emotionally it just drains.

I find myself in a place where I have to admit my weaknesses to people that I am not close to. I have to discuss Marie's life and the fact that while she is doing absolutely amazing it may not always be so and time is limited and explain why we just can't wait on lists for years to people that I've never met. It makes me mean, stressed out, short on patience, and in a whole fed up. What really is the worst is knowing that we have it sooo good compared to so many families that are just drowning while trying to cope with children who are fighting huge battles. It's just sad.

I find myself looking for things to remind me that the world has some good left. Looking for that and online classes to get my CNA which if I even think about it pisses me off a little more. I have a bachelors degree in a science field. I am intelligent, I know how to provide Marie's care better than any person on the planet, yet I need a certificate in order to be paid for the time I spend providing a highly skilled service. Did you know you don't even need a high school diploma to get your CNA? Seriously.

**I just realized maybe I should clarify what exactly it is that I'm fighting for. Pediatric Hospice Waiver provides respite care, but only if it's done by a Registered Nurse or Certified Nurses Assistant. That means a stranger would come into our home and that's who I would leave Marie with when necessary. Provided they be willing to take on Josie too. Right. I don't like this at all.

I have some very qualified girls who I'm totally comfortable with, do things my way, know to call me if anything even looks even remotely weird etc. They deserve to be paid for the level of responsibility they take on. I can't afford that. So, trying to get the state to provide respite care. They will if it's a CNA or RN. I'm not down with that, I want to leave Marie with someone who loves her, I want to leave my baby with the person I choose not someone who the state deems worthy because they have a certificate. Marie is incredibly special. I also cannot leave and have any peace unless the watcher does everything my way. My fear is, I can't trust a RN or CNA not to think they already know how to care for Marie. They don't, she's not their baby. I can trust my babysitters, even if they're not yet 20. They love Rie, they fear me, they are like family. I choose them, plus they're more than babysitters. They are providing specialized care, I trained them.

Of course there are CNA's and RN's out there who are wonderful. Unfortunately all the ones I know who are as wonderful as I think they need to be for this job work full time already.

Next step, I become a CNA myself so that the state will pay me for Marie's care (as her personal aide) and then I can pay who I deem worthy of watching my kids what they're worth. Only federally funded health care could make this so complicated. The fact is that the exact program I need exists (train and pay your own staff via medicaid benefit for a very select few, we qualify), if you're over 18 currently, or if you can make it on to a waiver with at least a one year waiting list it could be up to 3-4 years, no exceptions .**

But, we planted flowers this morning. I have the foundations of a pretty decent tan (skin cancer be damned, if laying in the sun makes me happy I will do it right now, thank you). My Josie and I are going to make rice krispies treats this afternoon. I'm hoping Luke will be home and not so tired tonight that we can maybe watch one of the millions of shows we have recorded that we never watch. It's no longer winter and Marie and I can be out and about. I actually took her to the grocery store yesterday, she was amazed.

So I have a lot to be happy about.

It's just that sometimes renovation on a house that is not going as planned, admitting that after over a year and a half of Marie being sick we need some help, fighting for Marie in an arena I don't fully understand, topped off by the fact that because we are in such a rural area there are a lot of things that are just not available no matter what I do... it just gets a girl a little down.

Hopefully next week I make some headway with things. As for the house, one hiccup in such a big project is not bad.

I am getting so excited for Landon's Hope Walk next week! It is going to be awesome to see everyone, and I can't believe how much money Tami has raised in memory of her little man. I'm looking forward to this so much! If you can, there's still time to join us there ;)


I just read my post and realized I sound like a complete control freak. I am. And a neurotic one. Don't mess with me ;)

nothing much

Nothing much to say. Yesterday, according to my baby's birthday counter, Marie was 2 years, 2months, 2 weeks, and 2 days old. Thank you Jesus for miracles and the honor of holding this happy girl in my arms.

What happened last week?

That's a good question. It's hard to believe it is already Saturday. The week started off relatively normal: work on house, gymnastics, and I've still been advocating for Marie regarding positioning equipment. Then Wednesday saw the great drywall debacle. Namely, our drywall guy we had lined up wasn't going to be able to do the job so I began the process of finding another. Luckily I have a friend who knows people. I've got my fingers crossed that the drywall will get done and we'll be painting soon.

Thursday Marie had her neurologist appointment. She hadn't been to see Dr M in 6 months, and our only thing we really wanted to talk to him about was the muscle spasm she has in her right cheek. It started within the last month and doesn't seem to bug her, it's just new. He informed us that it is in fact a myoclonus jerk. In Marie's case its caused by the lesions in her brain stem (Leigh's Disease causes lesions (dead or dying tissue) in the basal ganglia and brain stem). It sucks, but really, if our only complaint in six months is that her face has a twitch we don't have a lot to complain about. Dr M smiled nearly the whole appointment and simply stated her "progression is not what would be expected". That, in layman's terms means that Marie is doing fantastic, this disease which they tell us will kill her is not progressing much at all (though at one time is was frighteningly fast). She's stable, thriving and a God given miracle. Marie has Leigh's Disease but it does not define her, she has certain obstacles to overcome but they do not control who she is. At first she seems distant and unaware but any time spent with her shows everyone she is a regular kid full of joy, naughty, deep in her own version of the terrible twos, and an immense blessing. Furthermore, she is fully with it.
Dr M noted her eyes are tracking better than they were before, and her muscle tone has increased (this may be progress, or it may be the transition from hypotonia to hypertonia). Only time will tell. For us at the moment it means she's better able to hold her head at mid-line than she was before, and she's started rolling over to her side again.
It was a good appointment, lots learned, and because of some new information I gained I may be going back to school in June to become a Certified Nurse's Assistant (CNA). Respit care has been a huge struggle for us, we just can't find anything that works. We are just to rural for most services that are offered. But, there is a program in which the state will reimburse a primary care giver for care provided, if they become a CNA. If I were to do this it would open up some new windows for us, we could pay our babysitters what they're worth (they are special girls to take on Marie and their pay needs to reflect that), and since working outside the home is not an option for me it would give us that opportunity of a second income of sorts. We'll see, nothings decided, and I don't even know if my info is 100% accurate but it may be an option and something we'll be looking into.

Last night was also a really big deal for us, Miss Josie graduated from Preschool. They had a program they put together (she was Minni Mouse) and a little graduation ceremony. Completely adorable. I have lots of photos to share. I cannot believe we're old enough to have a kid going into kindergarten.
So, that was the last week in a nutshell. Busy! Hopefully next week is a little slower but I don't count on it. Between houses, farming, kiddo's, etc this is a crazy time of year! Today should see us done spraying no till for weeds and then it's on to the next thing. Baby number 3 is doing well, wiggling all about and busy as can be itself. After Thursday's appointment and Friday's celebration Luke and I are feeling pretty blessed:)

Verse

Today's daily verse is my most favorite verse of all :)

John 14:1-4
1. "Do not let your hearts be troubled. Trust in God; trust also in me,
2. In my Father's house are many rooms; if it were not so, I would have told you. I am going there to prepare a place for you.
3. And if I go and prepare a place for you, I will come back and take you to be with me that you also may be where I am.
4. You know the way to the place where I am going."

Marie's 2 year checkup

Yesterday Marie had her 2 year check up. She did really well and actually smiled at the doctors office. Before she's always had major anxiety being there but yesterday she was actually pretty relaxed.

She weighed in at 23.3 lbs (a new record!) which puts her in the 5% on the weight chart, the first time we've even made it on there since she was about 9 months old. She is also 34.75 inches tall, which is basically 35 inches and that explains why she seems so long to us. She's in the 75% for height.

We were way behind on the normal baby shots and she needed 6 of them so we got 3 yesterday and she gets to go with me to my next OB appointment and get the next 3. Overall she's doing well with those, a little cranky and a low grade fever this morning but not too much reaction to anything yet (fingers crossed).

All in all, she's doing great, THRIVING, and showing signs of her version of the terrible twos. I'm totally amazed by her.

We're going to lay low this weekend and work on the house probably, we may have a showing for the old house on Saturday... ugh! It would be nice to sell this thing someday!

Happy Mother's Day to everyone :)

Green fields...

Wheat across the road from the farm.

Grandma's Field. If you look in the low spot you can see the wheat is a little lighter here. There's still a bit of water in that lagoon.

Filling the semi with last years binned wheat, hauling to Scouler.

Daddy's co-pilot. Josie rode with Daddy this morning, was thrilled and says she want's to go again after gymnastics this afternoon (they hand out dum-dums at the elevator). She is also really annoyed that she needs to wait until wheat harvest to ride in the combine. Can't we just take that out for pleasure cruises whenever we want to?

My co-pilot. Marie was in her sling this morning.

Filling the grain cart while the semi's gone. When Luke gets back from the elevator they then dump that onto the semi and it's half loaded. They just use the auger to fill the other half of the truck. Apparently this is much faster!

Another picture of the grain cart and big bins. The auger on that grain cart is huge (this is the one they got last year for those in the know)! It is amazing how fast it unloads!

Random favorites from the last few weeks.

Luke was testing the stations of the lawns sprinkler system and accidentally got the girls. I must have snapped a picture just as the water surprised Marie!

Tent!

An updated of sorts in no particular order:

• Marie got her hair cut by Annie again. We re-discovered that she has baby curls, they are adorable.
• Josie showed her belly button to a boy, she is not shy.
• Marie is now sleeping in her crib (!!!). We took the side rail off and put it right next to my side of the bed so she's still right next to me. Aside from one very looong night she's doing great!
• I am now a huge fan of diapers.com. Their delivery is amazingly fast.
• I am incredibly excited to get our very own Nap Nanny!!! It should be arriving next week:) The company is great to work with and I'm excited at all the uses for this. Fellow families of low tone/special needs kiddos, check it out! This is the coolest thing!
• Marie has an appointment with her neurologist next week, hopefully it goes well. She's still doing amazing, we just have a few questions. Unfortunately we've noticed a little facial tick, we're praying it's nothing. It doesn't seem to bother Marie much, but it's becoming more constant. Hard to see progression of any kind, we'll see what he says.

Whew!

It's been over a week since I updated! Things are good here, just really busy. Farming is picking up and it's the time of year that things have to get done. We've also been working on the new house a lot, and last week I spent a huge amount of time meeting with various people who help us provide several aspects of Marie's care. She's getting big and needed some new equipment so I spent a lot of time talking to people, finding things that will work for us and getting it all set up.

The good news is, it all worked out lovely:) I'll update more later, right now I'm just checking in!