Sweet Relief!

This girl is a climbing machine – Kimball was and has never been a climber so it’s very new for me. She may be a slow crawler and doesn’t walk yet but she knows what she wants and will get it eventually. 

This doctor appointment was one to remember. Usually, cardio appointments end up being a long four hours. Not only was this one under two hours but we received fantastic news! Cora doesn’t have to have heart surgery!!!!!! The ASD and pulmonic stenosis are correcting themselves, much to the doctor’s surprise!

As soon as I got in the car I lost all composure, I was so overcome with gratitude and humility and I knew it was all because of our Heavenly Father. Cora is truly a miracle baby and continues to prove to us the opposite of what doctors tell us. She’s incredible and I’m completely elated!

The Plague

Wow, what a tough couple of weeks it has been! We have all been sick, sick, sick. I've missed a month of church (although I went last week and regretted it, I was out in the hall with a cranky Cora for all three hours and was in tears by hour 2.5), we've missed three weeks of therapy, missed everything outdoors; it's been pretty miserable. One night I had the stomach flu which recurred a few days later (luckily nobody else got that!), all of us have had colds at one point, Kimball had viral pneumonia (I have no clue how he even got it), and I still have no idea what's going on with Cora. I spent one day deep cleaning the whole house to sanitize and get rid of the awful germs, I feel like we've been hit with the plague.

While I took Kimball to the doctor I managed to get him to do the Pettingill eyebrow. And I'm so proud.  :)

Catch Up

I feel like it has been forever since I posted last. In short, after we moved into the new house everybody has been sick, especially Cora. Kimball had viral pneumonia (I have no idea where he would have picked that up from) and I have no clue what's going with Cora. I've taken to her to several doctors and even a 1:00am trip to the ER and I have zero answers. We've had a lot of changes in the past month and finally some spring weather, hallelujah!! I'll post more as time allows and hopefully soon.

Cora The Dare Devil

We did a follow up with the allergist last week and found she IS allergic to milk. I'm supposed to continue cooking with milk to give her those trace amounts of milk and after she's been on a probiotic for a month, introduce a half ounce in one beverage a day for a week and then increase to a whole ounce, etc.. The slow introduction should help her system not to be so "shell shocked" and break down those proteins easier. She's definitely allergic to red meat. Last night I made a tune casserole type dish not realizing how much milk was in it and she paid for it today, poor girl. I should've realized it had milk!

I'm still waiting to hear if she's supposed to have an MRI on her spine or not, the two doctors wanted to let Dr. Piston make that call (Guild School doctor). Since we were in chaos living out of boxes and moving, I pushed some important doctor appointments back, I didn't want to unnecessarily overwhelm myself with the move. And I'm glad I did because both kids ended up sick anyway.

Today at therapy Ginette asked about her purple hands and feet - they are always purple! I don't know why they are and no doctor has an explanation for me. They aren't cold to the touch, at first I wondered if it had to do with blood flow or oxygen but both the cardiologist and pulmonologist said no. Ginette was wondering today if she has sensation in her feet. Maybe the purple hands and feet are associated with the spine?  Maybe it's associated with the HCC or the other brain abnormality? I have no idea. I'm part of a few support groups (for lack of a better word) on facebook and one mother actually brought it up and wondered if there were other people who experienced the same thing. I followed that trail for a bit and nobody has an answer. It's really strange. I never realized it until I was facetiming mom back when Cora was an infant and she asked why her hands and feet were so purple, she could see them on the video. So, I don't know what that's about or how concerned I should be about it nor do I know where to start finding answers.

A few weeks ago we had a pulmonology appointment but this time I requested a different doctor since my first experience with that department wasn't the greatest. Dr. Rai was just ok and thorough as well but she changed medications without telling me why or explaining what it was for. I was supposed to discontinue the nebulizer medicine which I'd already quit doing because Cora certainly won't sit still for 10 minutes and certainly not with a pesky mask over her face. I'm really grateful that Dr. Drain is so wonderful and amazing (and my favorite doctor) because I kept the pulmonology notes for her to give me a second opinion. She's just so awesome, explained things way better than the pulmonology doctors, and I'm wondering if I still need to see pulmonology since I'm not getting anywhere with them.

I also have yet to reschedule Cora's cognitive evaluation, again postponed because of the move. This Friday is her cardio follow up, I'm nervous because I can guarantee that Cora will not sit still for at least 30 minutes for the echo. No way. I know that if they don't sit still then you have to reschedule the appointment and kids have to be sedated until they're old enough to cooperate. Not looking forward to that but I'm eager to know if the pulmonic stenosis is still improving and if the ASD is still an unchanged open hole.

I've only recently tried to be more consistent with baby sign language, I've been encourage by her ST to do so but never did it with Kimball so why Cora? But I figured I should in case she does have some type of speech delay or is nonverbal altogether. This week she's got down "more" and "all done." She does the usual mamamamamama or dadadadada or tststststs but doesn't associate mama or dada to either myself or Lance. I know by this age they start communicating a lot but I don't see much. She definitely loves music, especially with any motions and gets her arms going.

Cora is my dare devil! She can't walk on her own yet but boy does she climb everything! Kimball was never a climber and still isn't a big risk taker with those things, but Cora is definitely all in. Our new stairs are exposed on the side (no railing) so I have two gates blocking the stairs - one for the front and one for the side because she will climb over the side wall. Now she watches Kimball and tries to climb up the couch and climb over the side wall about 6 steps up. Crazy girl. Normally I wouldn't care if she falls but her reflexes are not at all where they should be (also why she can't go down the stairs) so I know she won't have that instinct to tuck and roll to minimize injury or anything. Heck, maybe one of these days I will play it tough and see how she does on her own

Adventures In Our New House

The signing, funding, and recording went well with the house and we got the keys as planned Wednesday afternoon. That gave me a few hours to check out the house and clean before we moved in the next day. The house was left totally immaculate, not a crumb or spec of dirt or even spider web was found. Whew! That took a lot off my plate. Even the garage was completely web/dirt free.

Lance had the weekend off so I used him until he was so tired he couldn't pick up one more box; I wanted as much of his help before he went back to work, especially with the heavy stuff. Thursday afternoon the missionaries came over at 2:00 and the four of us started loading all the boxes. We loaded/unloaded the boxes just in time for me to pick up some pizzas and head back to the duplex where more men from the ward were meeting us to load the furniture. We were all done by 8pm and the missionaries stayed the entire time, we wouldn't have gotten it done without their help! The following pictures are a few adventures from the first two days of living here.

Cora is quite the dare devil, she climbs EVERYTHING with such glee and absolutely zero fear. She's found a new little cubby that's just her size.

This is our fruit room - my new favorite room in the house! I've always wanted a place to put food storage besides cupboards or boxes and now it's all neatly lined out so I can see exactly what I do and don't have. Awesome!

This boy has been in paradise with our new yard. This is the view from the front porch; we have the front yard and a small side yard with no backyard. I like that the house sits back up off the street, to the right is the driveway with our detached three car garage.

In our negotiations, I requested that we keep the washer, dryer, piano, and the patio swing. Probably an odd request but they gave it to us! Kimball loves the swing and it's super comfy. :)

Our new piano, it's been lovely having music in our home again!

Wink, Wink

Too Sweet For Words

Little Everyday MOMents

The first thing Kimball does every morning is investigate the garbage to see what goodies Lance and I ate the night before once the kids are in bed. The evidence is usually in the garbage and Kimball usually wonders where it went. Just because it's garbage doesn't mean he won't lick the last few drops of ice cream.

Ah, a cold wintry day after church. He still wants to play in the mud and dirt despite the weather, this boy needs a back yard so desperately.

 Cheese-it and chocolate milk with bubbles, anyone?

 My little Charlie Chaplain girl.

This is what three year old boys do with their peanut butter and jelly sandwich; they ball it up and try to bounce it on the floor. That was fun cleaning up. But look at those innocent eyes!

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.