Where Oh Where Is The Sun?!

I feel like we're living in limbo. I've been packing up the house for the past two weeks and all I have left are the everyday essentials. I'm anxious to close on the house as soon as possible but I guess it'll be the first week of February at the earliest.

Cora is doing remarkably well. That little girl is a miracle through and through! Just last week Ginette asked if we wouldn't mind participating in a class that she's teaching at Eastern Washington University. She's recently gone back to school for her doctorate and she wanted to use Cora for one of her classes. She said, "It's really interesting how Cora looks on paper - lots of defects and abnormalities and specialists involved with her care. Yet if you look at her as a person, you'd never know she had anything wrong with her." Absolutely true!!! Everyday I'm shocked watching all of the things she does and how she's catching up on her milestones at hyper speeds. She's coming right along with her peers and I don't know what this next year will hold for her (surgeries?) but she's come so far and shocks me with her abilities. Oh and that smile?! She's the happiest little girl with the best disposition. She completely lights up my life!

Kimball is very anxious to go to the new house, he's already been telling me stuff he wants in the yard. We're all extremely anxious to get out of this neighborhood but it'll really benefit him the most. He's still got a little defiant/naughty streak in him where he whines incessantly and is mean to Cora, but I think the majority of that is due to cabin fever, cloudy days, and no yard.

Lance has been so busy at work, putting in so many hours at work. They're so short staffed and have been since November, it's really taken a toll on Lance. He's stressed and overwhelmed and stretched far too thin. He's got his regular managerial responsibilities as well as funeral directing, embalming center managing, sales, and anything else that needs done - at the other locations that are short staffed. He's picking up the slack for everyone without praise or compensation. But with it being about three months since he's been stretched this thin, it's taking a toll and I don't know how much longer he can last with this much pressure. He's SO good at his job and is a remarkable manager and employee; he's had several co workers who've told him if anything happens to him then they are quitting, they all love Lance. He's a good provider for us and works his tale off, not for the company so much (although they benefit from his hard work) but for the families. It's breaks his heart seeing families who don't get what they paid for or deserve when it's the company's fault for being short staffed. Anyway my point is, I'm very grateful for what he does for our family and for other families who grieve. I'm grateful that he's got the integrity and decency to do what's right on behalf of grieving families. That says a lot about a person.

Because Lance has been working so much, I don't get much of a break with the kids. I try not to complain because I know Lance needs to do what he needs to do. Tonight was so nice because he played with the kids and put them to bed without me, he hasn't seen the kids all week so I know they loved it as much as I did!

Catching Up

I don't know where the last few months have gone. The sky has been nothing but gloom and doom for weeks on end, the air is very cold, and it's still winter. Bah humbug! I need some sunshine!!!

In recent news, we are buying house which will hopefully explain my blogging absence. Over the Christmas break there were numerous car thefts out in the alley, we also found a neighbor to be a felon for kidnapping - time to move! Just last week I had to report another stolen car in the carport, I guess the alley is a good dumping place (as the police put it).

We are moving a mile south of us. BUT, it's a much better neighborhood and so quiet! Amazing that one mile can make that much of a difference. We'll be in the same ward, it has a nice big yard (big lot), three car detached garage, built in 1930, 2040 square feet, 2 bedrooms and 1.5 bathrooms (we plan to finish the basement), and completely updated. It even has stainless steal appliances and we get to keep the new washer, dryer, piano, and porch swing.

WE ARE VERY ANXIOUS AND EXCITED TO MOVE!!!

Cora Update

The xray results showed a normal spine except T2-T9 showed dextrose scoliosis to a 12th degree. That's what they told me over the phone and I haven't heard an explanation or plan of attack since then. I also still don't know if they decided to do an MRI of the sacral dimple or not. We have a doctor appointment tomorrow so I'm hoping to have all those questions answered.

I swear, sometimes the professionals can't make their minds up. A little while ago Cora was too tall and big and now she's losing weight and they're concerned about that. She lost a half pound after I took her off of the pump, the weight check last week with Jordan showed no more loss but also no weight gain either. I really don't want to put her back on the pump, that thing had become such a nuisance with Cora moving all over the crib, it more than doubled my laundry and bathing duties. If Cora didn't aspirate then it wouldn't be a problem because I wouldn't have to limit her quantity. But at least she doesn't have an oral aversion and she definitely loves to eat!

We're still working our way into the dairy products, it's been a slow process and we had a set back in December. She's ok with cheese and I'm not sure about yogurt, I think she may be intolerant but it's so hard to tell for sure! I still haven't tried cow's milk, maybe next week we'll attack that.

My Morning Cubs

  

Getting Fitted

Last week at school Cora was fitted for orthotic braces to help her walk. They're so cute! She absolutely LOVES going to school and LOVES physical therapy. For now she'll just wear these at school to determine if she'd benefit from them long term or not. If so then I'll have to get some high-top shoes or a special shoe to fit the braces as well. Currently, we go shoeless everywhere because her feet are too big/fat and her legs are too fat for boots to zip up. If I put her in a really big size then they're too clown-like and floppy for her to walk so we're doing without. I'll eventually need to find some high-top shoes for her because those offer more support through the ankle where she needs it. She's not walking on her own yet or standing on her own but she'll get there. She's definitely got the drive!

An Infectious Laugh

Just........How?

I don't know how she sleeps like this. And how did the bear end up on top of her?

Random Pictures

Christmas Parties & Christmas Day

We had a lot of Christmas parties to attend this year which were all quite fun. I hosted a girls night-Christmas style and we did a goodie filled sock exchange among games and lots of yummy treats.  We also had a couples party with three of my good friends, the ward Christmas party (where I locked the kids inside the car. What a dummy!), a party of a fellow barbershopper, and a work party. 

These pictures are of the work party and the kids had a great time! The food was absolutely delicious, it was very kid friendly with the kids writing letters to Santa of what they wanted and gingerbread house constructing, Christmas bingo, a sing along led by Lance on the ukulele, and a visit from Santa.

At Ball and Dodd Funeral Home Lance works with five other people in their small office that he manages and he really wanted to do something nice for each of them. After we got their gifts ready, the kids and I showed up at work and handed the gifts out during their staff meeting. Kimball dressed like Santa and helped Lance with everything while I sat with Cora in the corner, it was cute to watch and everybody loved it.

This is our Christmas morning! And the only two pictures I got because I didn't want to be stuck to the phone or camera all day. We stayed home which I loved, it was very low key with just our little family. I made a yummy Crumb Cake and sausage with sparkling juice for breakfast. The missionaries came over mid-morning to use our ipad and computer to call home from, it was neat to be a part of their Christmas as well and help them in that regard. These are the kids with their favorite gift. We sure love the Christmas season and are so thankful for eternal families and the gospel!

Say What?!

After the geneticist appointment and her being concerned that Cora is now too tall, I called Jordan to ask her what she thought and to see what we needed to do. I'm not at all concerned about Cora's height, she's made some major growth and progress since her surgery and is definitely no longer FTT. Since she's been in the 95% for height, weight, and head circumference I asked Jordan if we could take Cora off of the high calorie diet. So she gave me a new recipe to use for daytime oral feeds and nighttime pump drips. I began hearing that usual rattle in Cora's chest a little more prominently so I new the consistency wasn't right, she was aspirating. I just experimented a little bit with her recipe until I found a thickness that looked better to me. I've kept Cora on my new recipe and she's done great with it. That aspirating is tricky business, the old vs. new recipe for higher vs. lower calories is only about a half scoop difference. That ever so slightly thinner milk was just thin enough to cause problems. I should become a chemist.

Cora does get an open cup with thickened formula in it just for practice but I wondered why we are still on purees. My fear was that because of her dysphagia she would choke on everything I gave her, no matter how small the pieces were cut up. I tried giving her a few bites of peaches and she did wonderful so I took the leap to do strictly table foods, no more purees. I thought it was a long shot in the dark and that she would definitely choke on at least half of the foods I gave her.......wrong! Cora did beautifully!!!! She's done shockingly well with table foods, I'm just absolutely stunned at her progress! I'm totally speechless and I can't begin to express how happy I am and also relieved. I thought we'd be in the baby stage of bottles and formula for at least another year because of her dysphagia and aspiration. But Cora's done and continues to do great with table foods and now eats like any other baby her age.

Last week we met with the allergist to see if we have the green light with dairy products. We have a go! We're supposed to introduce white cheese first, then yogurt, and then very slowly introduce cow's milk. Dr. Drain thinks she will most likely be lactose intolerant but time will tell. So far, Cora's done great with cheese and this week we are introducing yogurt, so far so good! If she does well with milk then we can be completely done with formula altogether. Woohoo!!!

THE BEST NEWS?!?!?!?!?!?! Since Cora was eating table foods regularly she did start to aspirate again on the table foods. So I tweaked her diet to 5-6 small meals a day instead of 3-4. She was fatiguing with the bigger meals and aspirating. Since she's been on the 5-6 meals a day she's done wonderfully and the aspirating has cleared. I got to thinking to myself, if she's eating this larger volume during the day then is she getting too much with the addition of the 12 hour G tube drip at night? So I tried taking her off the pump at night. She didn't wake up once and hasn't skipped a beat. Cora's been off the feeding pump exclusively for about 10 days now!!! Jordan is out of town so all of these questions about her thickness, lower calories, is she getting too much volume, what about milk, etc. I haven't been able to ask her. So I've just experimented and Cora has done so well. I'm so shocked!!! Jordan comes next week so I'll either get a pretty good rebuking or praise, I'm not sure which.

Cora continues to astound me with her progress and improvements, what an amazing girl she is!

Modeling New Hats

A Three Year Old's Isms

This boy is definitely a three year old. Oh my, fits and whining and lots of it. He's developed a mean streak toward Cora lately, probably because she's more mobile and has learned not to let him take her toys. He's quit taking naps (my life as I know it is over!), he doesn't listen very well, and likes to drive me crazy. BUT, he's the funniest, spunkiest, little entertainer. He loves the ABC's, singing the Wise Man, coloring and painting, putting together puzzles, and treats.

This particular day he wanted to put his underwear on by himself, how do I not get a picture of those little cheekers?!

 This is our paper plate snowman we made together during Cora's nap, he's hung on the wall now.

Defying The Odds

A week and a half ago Cora went for a little "walk" at school. It was her first time ever walking and Ginette had her use these parallel bars. (Aren't they cute? All of their medical equipment and gear are all pint sized for the little ones like Cora, it's so cute). I was shocked that she did so well and she hasn't quit moving ever since.

A few days after this therapy appointment I wondered to myself why I hadn't let Cora play with her car/bike/walker thingy. So I put her on it for the first time and away she went! Again, proving the doctors wrong who said this would never happen. Go Cora!

The Dream Team

Cora has got THE BEST therapists, teachers, nutritionist, and doctors on her side. The ones that work with her weekly are these four awesome ladies who have seen Cora since she started at the Guild School at four months old.

Introducing: Ginette, physical therapist and encourager extraordinaire. Because Cora has made so much gross motor progress so quickly, the sessions with Ginette are my favorite because I love to see the new things Cora does that I usually don't notice. And Ginette is the Queen of Encouragement, she is always so positive and happy and has nothing but optimistic things to say. She always gets the biggest kick out of Cora's very happy-go-lucky nature and huge grins. When Ginette laughs, everybody laughs. She's got a contagious personality.

 

Meet Jan, speech pathologist and aspiration/feeding expert. Jan has been my go to gal for all my aspiration questions and concerns.  A lot of people ask me why Cora has speech therapy when she can't even talk, what does Jan do the whole hour? Initially she really helped me with all the feeding issues Cora had, which were no small issues. I've had to call her a few times after hours or on the weekends in desperation of help, pre surgery. One time I was about ready to take Cora to the ER because of her breathing but I called Jan before I went and she talked me through everything and saved me a trip. She's also the one I tearfully called and begged for some kind of GI help and specialist referral, I knew what was wrong with Cora's digestion was major and I didn't know how to help her. Jan promptly gave me the referral. She's been so wonderful and also a pro with encouragement. She's been very complimentary of my motherly instincts but I attribute that more to Heavenly Father helping me with this complex baby. Either way, Jan has been a God send!

Our latest addition is Virginia, occupational therapist. She started therapy with Cora at the beginning of November (ish) and although I'm still getting to know her, she's also awesome!

This session I had to get a few more pictures because Kimball was just so cute. Virginia brought a smaller stool for Cora to sit on so Kimball quickly ran to his room to get his big stool to sit on, perched right next to Cora, and joined in all the fun.

 Meet Jordan, nutritionist/dietitian and nerdy math expert. Initially she was treating Cora once a week and since August has only been coming once a month. It's sad that we don't see her as often anymore, but a good thing, that means Cora is doing well! She helped me out a lot before Cora had her surgery and tried to figure out why Cora was almost at FTT (failure to thrive). She's been wonderful to pick her brain about the G tube questions and all the initial set up with first the NJ tube and then post surgery with the G tube. She takes height and weight measurements at every appointment and continues to tweak Cora's diet at every appointment. She's so smart and nerdy and an absolute delight!

Downtown Views of Spokane

This picture was taken at St. John's Cathedral on their memorial terrace.

 These bottom two are taken from a doctors office on Stevens and 6th avenue.

Barbershop

Lance came home from work one day with these flowers for me. Just because. I'm hoping it won't be the only time, but they were sure beautiful and smelled wonderful. I felt so loved.

The Pages of Harmony had their Christmas show a few weeks ago and it also included dinner, a few raffles, and a silent auction. They didn't expect so many people to show up so they were four tables that didn't get any spaghetti. I guess that's a good problem to have in some ways. The best part was Kathleen, she's Lance's office administrator at work and boy was she very happy to be there. She whooped and hollered quite loudly after every song, she gave standing ovations on almost every number, she praised God after every song, and yes she drank a little too much wine. At the very end she actually interrupted the program and went to the front stealing the microphone from the director. She talked about how wonderful the guys sounded and how warm her heart was and she just had so much love in that room. Then she mentioned Lance, "my amazing boss, Lance Cox, sings with you guys and isn't he just great?" I think Lance wanted to die at that moment. In all, it was a great show, including Kathleen whom I gave a standing ovation to.

Bathing Blues

 The kids really enjoy bathing and Cora has especially taken to drinking the water. Yeah, gross to drink the bath water but that's not my main concern. Water consistency is too thin for her so she aspirates big time every time she gets in the bath. I finally took the cups away but then she turned the boat into a big cup. Naturally, I took the boat away as well. Now as soon as she's in the water she'll bend in half and just stick her whole face in the water and start gulping. I'm not sure what to do about it any more, needless to say her baths are long enough for her to get clean and that's it. I hate taking her out early because she loves it so much but I don't know how else to keep her from drinking the water. Silly girl!