We found them, thank goodness.
I stumbled upon this recipe a few weeks ago, and Ben and I have stopped looking for a pancake recipe to call our own. Here it is!
1/2 cup all purpose flour
1/2 cup whole wheat flour
1/4 cup flaxseed meal
1 1/2 tsp. baking powder
1/2 tsp baking soda
1/2 tsp salt
1 1/4 cups buttermilk ( I have just been using regular milk and adding a TBSP or 2 of lemon juice)
1/4 cup pure maple syrup
1 egg
Mix the dry ingredients together, the wet ingredients together...then all together. Butta your pan and sizzle away. You can add walnuts, nutmeg, or cinnamon to spruce them up for the season.
You can thank me later! :)
Wednesday, September 7, 2011
Friday, September 2, 2011
Health Update
Hey! Just wanted to give you guys an update on ellie's health progress. We went to Vanderbilt last month for a Genetics specialist to see the little gal. We had a full genetic counseling session to determine possible causes of her health issues. Then we met with Dr. Morgan, her pediatric genetic specialist. I am so thankful that she is in his good hands.
Dr. Morgan did indeed conclude that ellie has a genetic disorder. He did not confirm what it was, but sent her in to get blood work done, looking for a specific disorder, Holt Oram syndrome. This is a hand-heart syndrome. Patients with this genetic disorder always have a hand malformation, along with a septal defect in their heart, both of which ellie has. This makes the most sense for her. The doctor said that the test could come back negative, but that if it did, it would only mean he would look for what else it could be. So basically, she has something, and we just need to figure out what it is. He took a look at both of our hands, and since we have no visible malformations, said she probably did not inherit it from us, but rather through a gene mutation. This happens frequently in this disorder, he said.
I feel okay about this news. I feel like knowing something at all is so much better than knowing nothing, and having nothing make sense. If ellie has Holt-Oram, she will function normally mentally, and her physical disabilities will be limited to her hand problems (but her upcoming surgery (ies) should dramatically help her hand function.) She could also inherit electrical problems with her heart, such as fibrillation problems. Having this disorder will mean she will see a cardiologist regularly for EKG's for the rest of her life to make sure her heart is functioning properly. (This would not be a cardiovascular heart problem, but an electrical problem...has something to do with how the signals fire to regulate it). Her worse case scenario would be that she could have a pace-maker. This would also mean that she would have a 50% chance of passing this on to her children. This piece makes me the saddest, because it will affect her life the most dramatically. I hate to think about her having to make decisions based on this possibility...but I suppose that is a pre-mature worry.
Dr. Morgan reassured us that, if she does have Holt-Oram, and since we know about it so soon, it will be manageable throughout her life. Technology is such that, should she need them, heart medications and ekg's will regulate any potentially life threatening problem. Also, detailed sonograms are already available to be able to detect heart problems and hand malformations in the womb. So, when and if she does have a baby someday, they can know and have the correct specialists on hand if the baby inherits holt oram. And since this technology is already available, I am in good spirits that even better technology will be around in 20- 25 years! :) This is all such beautiful news to my ears!
We should be finding out the blood test results in a couple of weeks. If she tests positive, Ben and I will be tested for Holt-Oram. Obviously, if we did pass it along, we too will have a 50% chance of passing it along to future babies. We are not too worried about this prospect at this time, though. We will re-visit Vanderbilt after this to address the next steps. Most likely, it will involve a referral to a cardiologist, and the continuation of seeing her hand specialist in Louisville. Ellie will see the hand specialist this month to determine when her first surgery. Please pray for this, as I am the most anxious about her surgeries and recovery right now.
I feel like so many of my friends have unknowns in their lives about their children's health. This just points me to lean on Jesus, because nothing is ever certain, and our bodies and those of our children are SO fragile. I pray that I will hold ellie out to my Lord with open palms, saying "Lord, your will be done mightily in her life."
Dr. Morgan did indeed conclude that ellie has a genetic disorder. He did not confirm what it was, but sent her in to get blood work done, looking for a specific disorder, Holt Oram syndrome. This is a hand-heart syndrome. Patients with this genetic disorder always have a hand malformation, along with a septal defect in their heart, both of which ellie has. This makes the most sense for her. The doctor said that the test could come back negative, but that if it did, it would only mean he would look for what else it could be. So basically, she has something, and we just need to figure out what it is. He took a look at both of our hands, and since we have no visible malformations, said she probably did not inherit it from us, but rather through a gene mutation. This happens frequently in this disorder, he said.
I feel okay about this news. I feel like knowing something at all is so much better than knowing nothing, and having nothing make sense. If ellie has Holt-Oram, she will function normally mentally, and her physical disabilities will be limited to her hand problems (but her upcoming surgery (ies) should dramatically help her hand function.) She could also inherit electrical problems with her heart, such as fibrillation problems. Having this disorder will mean she will see a cardiologist regularly for EKG's for the rest of her life to make sure her heart is functioning properly. (This would not be a cardiovascular heart problem, but an electrical problem...has something to do with how the signals fire to regulate it). Her worse case scenario would be that she could have a pace-maker. This would also mean that she would have a 50% chance of passing this on to her children. This piece makes me the saddest, because it will affect her life the most dramatically. I hate to think about her having to make decisions based on this possibility...but I suppose that is a pre-mature worry.
Dr. Morgan reassured us that, if she does have Holt-Oram, and since we know about it so soon, it will be manageable throughout her life. Technology is such that, should she need them, heart medications and ekg's will regulate any potentially life threatening problem. Also, detailed sonograms are already available to be able to detect heart problems and hand malformations in the womb. So, when and if she does have a baby someday, they can know and have the correct specialists on hand if the baby inherits holt oram. And since this technology is already available, I am in good spirits that even better technology will be around in 20- 25 years! :) This is all such beautiful news to my ears!
We should be finding out the blood test results in a couple of weeks. If she tests positive, Ben and I will be tested for Holt-Oram. Obviously, if we did pass it along, we too will have a 50% chance of passing it along to future babies. We are not too worried about this prospect at this time, though. We will re-visit Vanderbilt after this to address the next steps. Most likely, it will involve a referral to a cardiologist, and the continuation of seeing her hand specialist in Louisville. Ellie will see the hand specialist this month to determine when her first surgery. Please pray for this, as I am the most anxious about her surgeries and recovery right now.
I feel like so many of my friends have unknowns in their lives about their children's health. This just points me to lean on Jesus, because nothing is ever certain, and our bodies and those of our children are SO fragile. I pray that I will hold ellie out to my Lord with open palms, saying "Lord, your will be done mightily in her life."
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