Saturday, December 20, 2014

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!
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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!

Friday, December 19, 2014

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!


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Family Time

Lance had the whole week after Thanksgiving off of work which was SO nice! We got to spend some time together and do some fun things that we never get to do. We gave Kimball a glow-in-the-dark bath, made snowflakes, put up and decorated the tree, took both kids to the dentist (which was an awesome experience and I'm not being sarcastic), and went to the Mobius Science Center for kids which was super cool! Lance and I went on a date to see How The Grinch Stole Christmas on Broadway and that was fantastic!!














Wednesday, November 26, 2014

Cora Update

I haven't taken Cora back to the pulmonologist because I was so frustrated with the last appointment and I didn't want the same disappointment. I was supposed to get her back in to retake the sweat test and also do a blood test for CF, I finally did that this week and haven't heard the results yet. I did try the asthma treatments for three weeks as recommended and I saw no difference at all so I stopped giving them.

My personal theory is that Cora's rattle in her chest and upper respiratory are from aspiration. I know we've addressed her main aspiration issue due to dysphagia and I still think that part is under control. What I think she's doing is aspirating on trace or even large amounts of saliva. In fact, I'll go as far as saying that I guarantee that's what the problem is even if no doctor agrees with me. There's no test you can do to confirm or deny that she's aspirating on saliva. Her saliva just pools in her mouth and she can't control it. When she's teething (and sticking out her tongue 24/7), her rattling and respiratory starts to clear because the saliva just drips down her tongue, soaking her shirt in a matter of seconds. I know you can suction out extra saliva, give a medication that dries it up, and even have a surgery procedure to remove saliva gland(s). I don't know that any of those are a good option for her, I'm going to wait until I talk with the pulmonologist about it again but this time I'm taking Lance with me.

Last Monday we had an follow up appointment with her geneticist, Dr. Martin (who unfortunately is retiring in March and she's the only geneticist in Spokane), and everything went quite well but she does have two new concerns. She asked if anybody had taken a further look at her sacral dimple and extra folds in her bum crack, to which I replied no. I didn't think it was a concern and no doctor has ever said anything about it other than it's existence. She wanted to do an ultrasound of it to make sure the anatomy is normal and to cross out any possible abnormalities such as spina bifida or a tethered cord. I mentioned this to Ginette and she said since we're doing that we might as well get an xray of her entire spine. This week we got an ultrasound and xray done, I haven't heard the report of the xray and the ultrasound was inconclusive. Cora's bones had calcified (which is a good thing, that's what they're supposed to do) and they couldn't get a good look at the spinal cord. The next option is to do an MRI which they aren't sure if it's worth the sedation right now or not. I'm waiting to hear the final word on both of those issues.

Sunday, November 23, 2014

Winter Wonder

Kimball was so excited to see the first snow fall of the season, he was perched up on the couch for a good 20 minutes watching it fall. He was really excited to build a snowman and catch some "star flakes."


Sweetness

Cora very rarely reminds me of a Pettingill but this shot looks a lot like me

Date Night

It has been a very long time since Lance and I had a date and with it being the holidays, we decided that in lieu of gifts, we would go to a few shows instead. We both REALLY wanted and needed a vacation but since that isn't possible, a few dates will do instead. After we celebrated Cora's birthday we went to the Trans Siberian Orchestra concert which we've heard a lot of great things about. I thought it was going to be like a symphony orchestra but it was a rock concert. I was little shocked since I wasn't expecting that and completely overdressed. But we had a really great time together and loved the concert!


How Can One Sleep Like This?


Cora Turned 1!

Wow. I can't believe this day has come, Cora turned 1 year old!!! I was hoping this day would come but didn't have any guarantee and at times any hope. I had a long journey of heartache, confusion, and denial. I didn't have any close family to lean on that could help me with Kimball or accompany me to doctor appointments.

I'm thankful for long phone calls with family, girl nights with friends who helped me dissect and analyze what the problems were, what the doctors were saying, what my motherly instinct was telling me, and what the Lord was telling me. I've never in my life leaned so much on the Savior and his tender mercies for which I'll be eternally thankful for. It has been a year of countless miracles and Cora is still here. She's a fighter! She's so strong and determined and utterly fearless. She's got something that's out of this world and I'm not saying that because I'm biased. She's absolutely incredible and keeps proving the doctors wrong at every corner. I don't know how I got so lucky to be her mother. I'm just so incredibly grateful! I'm SO GRATEFUL that she's still here, that she's improving, and that she's mine for eternity.

Happy birthday baby girl, you made it!