Wednesday, February 18, 2015

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

1 comment:

Bonnie and Kempton Cox said...

Oh my gosh, I don't know how you keep all of those appointments straight! That has to be so exhausting.Good for you, though. You are doing a great job with Cora. :)