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!
Saturday, December 20, 2014
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?!
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!
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!
Friday, December 19, 2014
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 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!
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!!