Wednesday, September 23, 2015

Cora Update

Cora had an appointment with her dietitian on Monday. She's gained 1.5 pounds in a month since having the Gtube removed. Excellent! We are starting to reduce the caloric density of her milk, she's been on 40 calories since the whole food allergy ordeal in the spring. We'll see in the next six weeks if she continues to gain on her own.

She's had her orthotics for two weeks now and I've already seen a big difference. She still prefers to scoot or crawl but whenever I see her on the ground I always tell her, "Cora, stand up" and she immediately gets up and walks. This week she does that more on her own which is nice. I did have a few concerns about the orthotics wearing her ankles raw and the back of her leg so we went back and after remeasuring, they're going to make a new pair but slightly bigger. Oh, and out of curiosity even though insurance covered the orthotics, I asked the receptionist how much those little things cost. I was assuming $2-500. Those buggers cost $1500!!! I was quite surprised, I didn't think they'd be nearly that much.

The next few months we have ophthalmology and neurology follow up appointments. It has been so nice that the doctor appointments have finally slowed down a bit!!! I almost don't know what to do with all the extra time, but it has been so nice, especially for my nerves.

She started her new group therapy class at school and I'm so glad she gets the extra social interaction since she's such a social butterfly. There are about five other kids in her class and she absolutely loves it!

Overall she's been doing really well and it's been several months since we've had any complications arise. I'd like to keep it that way. She's developing quite the personality thanks to Kimball teaching her a lot of funny faces. She's such a darling little girl!!

Tuesday, September 22, 2015

Car Troubles and Missing Daddy

Last week Lance actually got a removal to Twin Falls so he was happy to do that one. He left Monday late afternoon. Tuesday afternoon he made the drive back home only to make it as far as Mountain Home finding he had engine problems. The alternator was to blame and no mechanic garages were open as it was after hours. He continued driving hoping to make it to Boise to stay with Allison for the night. Which sort of happened......

He made it about three miles short of Allison's house and the van broke down, literally, right in front of my Aunt Linda's house! Lucky for him! Jack and Linda were on their way out but Sarah was there to help him. He got the van towed to a dealership and Allison picked up Lance for the night.

The next day, no news from the dealership.

The next day after that, Thursday, no news from the dealership so Lance had it towed to a different mechanic.

The hiccup is that he's officiating a funeral service in Spokane Friday morning, he's got to get home. So he bought a plane ticket to Spokane and came home that evening. Friday morning the mechanic called and the van was fixed and ready to go $750 later. Lance worked the funeral service and then boarded another plane back to Boise to stay with Allison Friday night.

It happened to be Johnny's 70th birthday that weekend and the whole family was surprising him on Saturday. Needless to say, the kids and I missed the surprise party and Lance drove the van back home to Spokane on Sunday. Lance vowed to never work with dealerships again and he didn't make any money on that removal, BUT he made it home safely and that's all that matters. Happy birthday, Johnny!!!

***Today, Lance went to the temple with the youth in our ward to help do a baptism session. I bathed and tucked the kids into bed and Kimball was convinced that Daddy was never coming back. He kept saying, "I miss Daddy" over and over and over and no matter how much I reassured and promised that Daddy would be back in a few hours, he still didn't believe me. The kids really miss their Daddy! I guess the back and forth so much over the last week really confused them and Daddy is always much more fun than mom.***

Saturday, September 12, 2015

AFO's

These are Cora's new orthotics or specifically AFO's. Aren't they so cute and little? She'll be wearing these every day, all day for the next year or until she grows out of them. When she does walk her feet are pointed outward with the bottom of her feet in. These orthotics will help give her that additional balance, confidence, and straighten her feet out so she's walking properly. I'm really hoping that within a week of wearing these that she'll just take off walking. She's so close and she knows how to do it and that she can do it. If these don't work then we'll have resort to a little baby walker/gaiter to help her. But everyone is confident that this will be the last step and she'll just take off. Fingers crossed!


Cora's Walking

This was Cora's very first independent steps. Of course, she went back to crawling and we are still working on it. Walking isn't her main mode of transportation yet but she'll get there!
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Siblings

This is the only picture I have of them in their matching shirts together. We made these for the 4th of July this year. Never mind Cora's tired look as she was a bit under the weather.

Wednesday, September 9, 2015

Good Bye, Gastrostomy Tube

 Last month we had a long anticipated doctor visit with the GI specialist and co-treatment with our dietitian. I was looking forward to this appointment since March because I knew they would decide if now is a good time to remove Cora's gtube or not. The general rule is, you have to not use the gtube for at least 6 months. Here are Cora's stats:
  • Has not used the gtube for nutrition since December
  • Had a set back in the spring; she was really sick, starting to lose weight, and classified as failure to thrive. We learned she has four major food allergies and once we addressed those she started putting weight back on again.
  • During the spring set back we used the gtube for water. We did 8 oz bolus' once a day for two weeks.
  • She's still in 75-90% for height and weight. She put back on the weight she'd lost in the spring and is now caught up nicely!
We got the green light from both the dietitian and Dr. Z to remove the gtube!!! Here are the pictures, it wasn't a big deal at all and no procedure. They just pulled it out, put a dab of glue on the stoma and put two steri strips across it. Easy.


Here's the happy girl after the appointment!
Here's how the scar looks today, it kind of looks like a second belly button. The scars above and below it are from the stitches she had for 2 months that was holding the gtube in place while the stoma formed, and the inch long scar to the left of it was the incision scar from the surgery.
However, I was not prepared to deal with all of the emotions that came with removing the gtube. Anxious, happy, thrilled, nervous? Sure! Oddly enough, it felt like Cora was losing a limb. It felt like we were leaving a part of her behind when we left the hospital and she wouldn't be complete again. I felt sad because this gtube was literally her lifesaver! It saved her life and has been a part of her for 1 year and 3 months. And just like that, it's gone. I bawled. I almost felt the need to have a funeral, some sort of proper good bye and showing my respect. I couldn't believe how attached I had become to this little medical device and here I was sitting in the car in the hospital parking garage, just bawling my eyes out because I had to mourn this loss. I was so incredibly happy, it IS a good thing to have it removed because Cora doesn't need it because she's thriving so well on her own. But I was just so sad to say good bye, I needed more time to cope with this separation. And I shocked myself, I had no idea that I would feel this way until it hit me like a brick wall. The whole processing of it was just bizarre.

Needless to say, Cora is doing great without it. This is proof and this is how she eats every meal, like she's completely ravenous!
When we got home from the appointment I took Cora in to show Lance the good news. I said, "Cora, show Daddy your button." She lifted her shirt to show him and looked up with the most perplexed look on her face! She kept looking at her belly and up at us with inquisitive eyes as if asking us, "Where did it go?!" She realized it was gone and she still lifts up her shirt and looks at me wondering where it went.

Lance's New Project

I was surprised to find out that Lance sold his Smart car and within two days he bought this cute little thing. And I have to admit, it really is cute. It's a 1973 VW Karmann Ghia. This is an actual photo of Lance driving out of the guy's driveway. He drove it about 3-4 miles to fill up on gas before we headed back home (another 20 miles) and the car wouldn't start back up. So we had it towed to our house where it has sat and is now officially Lance's project. He sure is having a good time with it and I'm glad he has this little hobby to escape the world.

Entering a New Decade - I Turned 30!!!

These are my beautiful birthday flowers from Lance. It was a pretty low key day, Lance was busy at work but I had a few hours to myself in the evening. My present from Lance is pretty awesome and he couldn't choose the best one so he let me pick between these four options:
  • $300 spending cash
  • Lasik eye surgery
  • A new iphone
  • A 24 hour getaway - hotel, massage, spending money - no kids, no husband
Of course I picked the last one because I can't imagine anything better right now than not having to get up with the kids, getting to sleep in, or getting to eat my own food while sitting down without sharing it with anybody. I have yet to redeem this gift but I'm making a list of things I'm going to accomplish by myself and Lance is currently trying to work out the on-call schedule so he can be with the kids for 24 hours. YAY FOR ME, thanks Lance!!!!!

(When I asked Lance where he's getting the money to pay for any one of these, he apparently sold the smart car which I didn't know). 

Random Photos

These two have been getting along so well lately and I love it!
When school was out we'd walk down to the high school and the kids would ride their bike/car in the empty parking lot. Turns out all they really wanted to play with her these bike parking thingy's.

We went to Splash Down as a family, a little water park here, and although it was a bit chilly we had a blast! Kimball even went down the big slides with Daddy, he thought that was awesome.

 I found this slide on Craigslist, it's a huge hit!
Much to our shock, Pokey is not a male. We learned this when we found a little baby Guinea pig in her cage. Hmmm! Kimball named this little guy Baby Pokey or Little Pokey.

Washington Fires

The wildfires in Washington this year have been really bad, to the point that we couldn't go outside or have any air come into the house or car. You could see ash everywhere and it was like living in a permanent campground. The state authorities said the air quality hadn't been this bad since Mt. St. Helens erupted in the 80's. However, the fires make beautiful sunsets! My camera wouldn't focus because I was so zoomed in on the sun, but I kind of like this photo that way. There's no filter and the sun was just a wonderful magenta color.
The picture is from the news and is a shot of downtown Spokane. The top picture is a normal day and the bottom picture was one of the worst days during the wildfires. It was awful! The fires are still going but the Lord is mindful of His people and answered the prayers of the Spokane Stake who fasted for rain. The air is finally back to normal - almost.

Friday, September 4, 2015

“The things you do for yourself are gone when you are gone, but the things you do for others remain as your legacy.” 
- Kalu Ndukwe