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
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!
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!
Cora's pose is hilarious, it's like she knew I was taking a picture.
This pretty lady went from crawling to pulling herself up to standing in a matter of weeks. Her progress astounds me.
This cake was pretty impressive but it was super easy to make so I can't take too much credit. Kimball loved it! It's so hard to believe he's going to be a Sunbeam in a month, it's crazy! He loved everything about his birthday including helping blow up balloons and hang streamers and it's the first thing he told people for a solid week whenever he'd see someone - friend or stranger - that he turned three. Happy birthday big buddy!
This year we painted pumpkins with Kimball which he absolutely loved. He loves anything that is artsy probably because it involved making a mess, but we had fun painting these for family night. My smiley face isn't very creative. I was the flower to my lady bug and Kimball was Elmo for Halloween. We had the ward party a week before Halloween which was kind of nice having it done early but I still took the kids trick or treating for a few hours on the night of.