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.
Wednesday, November 26, 2014
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."
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!
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!
Random Pictures From The Month
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.
Kimball Turned 3!
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!
Halloween Festivities
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.
Sunday, October 19, 2014
Milestones
- Kimball has been doing awesome with his potty training. He does great if he's naked or wearing underwear but once the pants are on, he has accidents. We haven't tried going to the store in underwear yet but I'm hoping to do that this week.
- Cora Belle just develops so quickly now, I can barely keep up! It's a wonderful kind of keep up I'm not complaining. Last week Ginette said she'd be crawling in a month. Nope! It's official as of today - crawling is her main mode of transportation! She's also started pulling herself up onto her knees and I'm shocked. I just did not expect her to develop so quickly after her surgery.
- Jan did Cora's reevaluation this week and she's at about 6 months for her eating. This week I'll get further details and a full written report from all of the therapists at the school. She passed both the hearing tests and I'm eager to see exactly where she is - the dysphagia and aspiration really sets her back but she's still made so much progress with her eating since the surgery. I'm anxious to get exact details. Oh! And pretzels, she can eat pretzels now which I didn't think would happen for several more months to come.
- This week our schedule changes with the school. Thus far, Jan and Ginette both do in-home therapy with Cora, it has been so nice! But this week we are adding occupational therapy in-home and having ST and PT at the school back to back. I'm ready and really anxious to start doing it at the school, I know they have more and better equipment that isn't very portable and I'm anxious to meet more families at the school. It's going to be great, I'm so excited for Cora!
Pediatric Pulmonology
Look at this little lady, isn't she something?!
The visit was six hours. Enough said right there! The first several hours was nothing but discussion and Q&A about Cora's health starting at her prenatal care. Yep, it took us that long to discuss her history. After that long discussion I thought he would finally make this educated declaration and tell me what the problem was or what images we need to have taken. Nope. He said he doesn't know what's wrong with her and is going to treat her like she has asthma. There is no asthma testing for children under six years of age so the only solution is to treat her with a nebulizer and see if it works. That's it?!?!?! I wasted six hours of no bathroom or food breaks to hear that? I was dumbfounded and upset. He then said that he wants to get a sweat test to see if she has cystic fibrosis and that the chest x ray from September showed abnormal blood flow in the bronchial tubes likely from her ASD. I'm happy to comply with the CF test, the more tests the better. But he didn't say anything else about the bronchial tube thing......something is not right here.
So we are back to guessing games. I'd rather they do every test and image and x ray needed to rule out other diagnosis' or potential problems. I'm really frustrated that he wants to treat her for asthma, simply because he doesn't know what is wrong. True, she could have asthma and I could be totally overreacting. But I don't feel like I am. This guy is supposed to be the best and I feel like he isn't taking it as seriously as I think he should be. I understand she isn't his first priority, but she's priority enough and I spent months on the waiting list to get into his office and an additional six hours of lengthy medical history just to be shoved out the door simply because he doesn't know. Ugh....I know I have a bad attitude about this and I really want to change that attitude but I just can't shake it. I'm still frustrated about the whole thing!
Oh and the CF test results came back on the "high end of normal" so I have to go back in to have the sweat test done again and more blood work just to be absolutely certain that she does or does not have CF.
Saturday, October 18, 2014
Old Pictures From Lance's Phone-These Go Way Back to February
Random shots from around the house, Cora is about 3 or 4 months here. Or maybe two months.....I don't know!
Oh! Poor baby....laying on a towel to soak up the horrible spit up.
This picture is bittersweet, it was the kid's first bath together and I had to take a picture of that. But it hurts seeing how skinny Cora was, how much she hated baths, and seeing her awful rash which was luckily not in it's worst stage yet. Just so many problems yet to be diagnosed and treated which makes me cringe - she was in so much pain and discomfort! I just didn't know how to help her. I guess when I look at the picture I'm also flooded with guilt.
Oh poor baby! This was the adorably cute Easter outfit Donna got for Cora and it just drowned her. She was so little because she couldn't keep anything down, I always had towels or blankets under her.
Singing Valentines!
Easter Part 2: My visiting teachers invited over their whole list of sisters for an easter egg hunt and treats. It was nice! Left to right is Julie Ramos, Liz Roe, me, Rika Stokes, Heidi Lewis, and Dana Batt. (Rika is holding Cora).
These are a few from work.
1. Lance's boss Caryn (left), pictured with Laurie
2. A few are various ones from a company bbq dinner
3. The eagle picture......This is great! Lance went to a week long trip to Portland to attend a series of manager training meetings. Throughout the week the participants all voted on who brought the most to the table - the winner was Lance and he won this ginormous eagle painting which is currently hung in his office.
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