wearing 4 pairs of daddy's underwear!
hooray for spring!
having an outdoor treat...juice box!
anybody home?
going for a ride around the block in daddy's BIG van (rideshare)
Wednesday, March 24, 2010
You asked for it...
I've had several people requesting new photos, so here you go. We haven't been real good about taking pictures lately...we'll try and be better!
Tuesday, February 23, 2010
Good News!
What good news we have! First of all, we picked up Ethan's glasses last week Friday. What a little cutie he is...
He has done a GREAT job of keeping his glasses on. We have told him if he wants to take his glasses off, he needs to come to us and ask for a "break". He has done exceptionally well with this (except for last night when he took them off and hid them under the couch!) and in fact didn't even ask to take a break at all today! Woo Hoo!
And Aidan has been such a little trooper through this. He is very proud to show off Ethan's glasses and to point out other people who wear glasses. He did have a little melt down this evening, but there has been a lot of attention on Ethan this entire month, so I think the poor little boy is probably allowed a melt down. I felt so bad for him, I shed a few tears myself.
Yesterday, Ethan and I made a trip to IA City for his MRI. What a brave boy he was! The staff at IA City was also amazing and made all the difference in Ethan being able to tolerate everything. Once his IV was started he was off to sleep and into the MRI scanner. When he woke up, he stumbled around like a drunk for a little while, but mom helped him walk some of it off at the outlet mall (who can drive by Williamsburg and not stop??). We received a phone call tonight with wonderful news...Ethan's brain and pituitary gland are completely normal!! It did show that his optic nerves are smaller than normal, the right side being worse than the left. This is information that we already knew from the previous visit to IA City. They said the optic nerve hypoplasia can be associated with albinism, so we will continue to await those results. It will probably be a couple more weeks before we hear any results on the genetic tests for that. In the meantime, they said to keep encouraging him to wear his glasses and return to see them in May!
Thank you everyone for all of your prayers. They've been working!
So what else have we been up to? Well, besides digging out from all the snow (with no end in sight!)
(Yep, that is our mailbox, peeking out of the snowbank, with big snowflakes continuing to fall)
We have been busy travelers this month. After 2 trips to IA City, 1 long weekend to Chicago (happy 1st birthday Kayla) and a weekend in northwest Iowa, we're pooped. But, the fun's not over yet. My mom gets possession of her townhouse tomorrow, we have TWO birthday parties to attend this weekend, and then move my mom in the next week. We'll wrap all of the up with my 30th birthday on March 7. Whew! I may just sleep through my birthday.
We'll end this blog with a few more pics just for fun. Hope you enjoy!
Ethan's new favorite meal...cereal WITH milk!
Oops, Aidan got ahold of the Sharpie!
Lounging on a Sunday afternoon
Nice outfit Ethan!
Future Techie
Thursday, February 4, 2010
"Eye" had a long day
What a day! Today we met Dr. Drack in Iowa City. She is a pediatric eye specialist that we were referred to for Ethan's eye problems. We were there from 8:30 am to 1:30 pm...whew! Ethan was such a little trooper. He cooperated with every eye exam and test that they wanted to do...including many pictures that were taken of the inside of his eyes. As you can imagine, this involved having to sit very still and to look straight forward into a little blinking light. They were all very amazed at how well Ethan cooperated with each and every test. We are very proud of him! This is going to be a long, detailed blog entry of what we found out today. We apologize if this bores some, but this is the best/easiest way for us to communicate to all of our family and friends.
Let's start with a picture of some eye anatomy...I was wishing I'd brushed up on this BEFORE going to the appointment today.
Ok, now you'll have a picture to refer to. To refresh your memory, we made the trek to Iowa City today on a recommendation from the local eye specialist we've been seeing since Ethan was 6 months old. At Ethan's last exam she noted that his eye crossing was markedly worse. There has also always been the underlying question of whether or not Ethan may have ocular albinism. We essentially found out 3 things today. So, from most simplistic to most complex:
1. Ethan is mildly farsighted. This means he has trouble seeing things that are close up. Dr. Drack believes this is causing his crossed eyes. When he is trying to look at things close up, his eyes are crossing in because they are trying to focus on the object. The plan: try glasses with him. She is not recommending any surgery at this time. If the glasses correct his farsightedness, it is possible that it will also correct his eyes crossing. Of course, there is the possibility that this isn't the root cause of the eye crossing, and we will have spent money on glasses for nothing. Overall, it is the most affordable, non-invasive thing to try. We picked out some cute little frames for him today that appear to be highly DURABLE and should have them next week sometime. My biggest fear is that Aidan will think he needs some too! :)
2. Ethan has Optic Nerve Hypoplasia (his optic nerve is smaller than it should be). The optic nerve carries "messages" from your eye, to your brain (in a fraction of a second) which then converts that message into the image that you see. AMAZING!!! You can see in the picture above, the optic nerve enters the back of the eye. The opening in the back of the eye is the EXACT SIZE of the nerve that goes into it. They took pictures of Ethan's optic nerve today. His looks like a pink circle, with a white ring around it. There should not be a white ring there. The pink circle (optic nerve) should fill the entire space. The white ring indicates that his optic nerve is not filling the entire hole it is going in to. Optic nerves exit the back of the eye, cross over each other, and then enter the brain. Right on top of where they cross, sits the pituitary gland. The concern of optic nerve hypoplasia is that since the optic nerve is small/underdeveloped, there is a chance that the pituitary gland is too. The pituitary gland regulates all of the hormones in your body. For quite some time our pediatrican has been worried about Ethan's growth rate. His weight does not even register on the growth charts, and his height in about the 8th percentile. The could corrilate with everything we found today. The plan: go back to Iowa City, have Ethan placed under general anesthesia and obtain a MRI of his brain and pituitary gland. If this would come back abnormal, we would then be referred on to a pediatric endocrinologist to assess Ethan's hormone levels. We don't have a date yet for the MRI, Iowa City will be contacting us with that date.
3. Ethan MAY have ocular albinism. As we all know from looking at Ethan, he is a fair skinned, blonde haired little boy. And when doctors do a dilated exam of his eyes, they describe the backs of his eyes as being very "blonde", or containing very little pigment. So, the ocular albinism has always been a possible diagnosis. Albinism is a genetic disorder that is a recessive gene. Adam and I have no knowledge of anyone in our families having albinism. Family members, if you are aware of anyone in our lineage having albinism, please let us know! Ok, get ready to look at the picture again. Most people with albinism do not have a macula (part of the retina that allows you to view objects with great detail). Ethan does have a macula, but its not shaped completely normal. Ethan does not have a fovea (a depression in the macula that provides acute eyesite). His retina is not completely without pigment. We learned today that people can have different degrees of albinism and that there are many types of albinism. Some people have near normal vision, while others are legally blind. Some can get driver's license, while others can not. The eye crossing that Ethan has can be a complication of albinism. The plan: there are blood tests to check for albinism. Dr. Drack tells us that this can be a long process to sort out as you might check for one type of albinism and have it come back negative, so you need to move on and check for the next type. Ethan had his blood drawn today to check for type OA2, the type Dr. Drack thinks he would most likely have. The blood is sent to a lab in Boston and will take 4-6 weeks before we have results on that test.
Wow, we walked out of there today saying "I thought his eyes were crossed?" We sorta feel like we just uncovered the tip of an iceberg today. We were very impressed with Dr. Drack. She was very knowledgeable and quick on her feet when coming up with diagnoses. For a couple hours it seemed the diagnoses were changing with every test that was performed. We feel very confident that we are at the right place to get things sorted out. We will go back to see Dr. Drack in 3 months. In the meantime, we will try the glasses with Ethan and pray that is the answer to his crossed eyes. Once Dr. Drack has the results of the MRI and genetic tests, she will be contacting us by phone. Please say prayers for Ethan that everything turns out good.
So, you ask, where was Aidan in all of this? We made the decision to leave him at home with Marie, Nana, Grammy, and Chrissy watching him (no, it did not take all 4 of them at once to watch 1 child...just 4 people to get all of the hours covered!). It was such a long day for Ethan that we are confident that was the right decision. We are told that Aidan would ask about Ethan and then say "EYES!" Aidan was a very, very good boy for everyone. We will need to make plans for Aidan to get to have a special day away with Mommy and Daddy.
With that, I think everyone in this house can say "eye" have had a long day! Thanks for everyone's thoughts and prayers for us so far...keep 'em coming!
Let's start with a picture of some eye anatomy...I was wishing I'd brushed up on this BEFORE going to the appointment today.
Ok, now you'll have a picture to refer to. To refresh your memory, we made the trek to Iowa City today on a recommendation from the local eye specialist we've been seeing since Ethan was 6 months old. At Ethan's last exam she noted that his eye crossing was markedly worse. There has also always been the underlying question of whether or not Ethan may have ocular albinism. We essentially found out 3 things today. So, from most simplistic to most complex:
1. Ethan is mildly farsighted. This means he has trouble seeing things that are close up. Dr. Drack believes this is causing his crossed eyes. When he is trying to look at things close up, his eyes are crossing in because they are trying to focus on the object. The plan: try glasses with him. She is not recommending any surgery at this time. If the glasses correct his farsightedness, it is possible that it will also correct his eyes crossing. Of course, there is the possibility that this isn't the root cause of the eye crossing, and we will have spent money on glasses for nothing. Overall, it is the most affordable, non-invasive thing to try. We picked out some cute little frames for him today that appear to be highly DURABLE and should have them next week sometime. My biggest fear is that Aidan will think he needs some too! :)
2. Ethan has Optic Nerve Hypoplasia (his optic nerve is smaller than it should be). The optic nerve carries "messages" from your eye, to your brain (in a fraction of a second) which then converts that message into the image that you see. AMAZING!!! You can see in the picture above, the optic nerve enters the back of the eye. The opening in the back of the eye is the EXACT SIZE of the nerve that goes into it. They took pictures of Ethan's optic nerve today. His looks like a pink circle, with a white ring around it. There should not be a white ring there. The pink circle (optic nerve) should fill the entire space. The white ring indicates that his optic nerve is not filling the entire hole it is going in to. Optic nerves exit the back of the eye, cross over each other, and then enter the brain. Right on top of where they cross, sits the pituitary gland. The concern of optic nerve hypoplasia is that since the optic nerve is small/underdeveloped, there is a chance that the pituitary gland is too. The pituitary gland regulates all of the hormones in your body. For quite some time our pediatrican has been worried about Ethan's growth rate. His weight does not even register on the growth charts, and his height in about the 8th percentile. The could corrilate with everything we found today. The plan: go back to Iowa City, have Ethan placed under general anesthesia and obtain a MRI of his brain and pituitary gland. If this would come back abnormal, we would then be referred on to a pediatric endocrinologist to assess Ethan's hormone levels. We don't have a date yet for the MRI, Iowa City will be contacting us with that date.
3. Ethan MAY have ocular albinism. As we all know from looking at Ethan, he is a fair skinned, blonde haired little boy. And when doctors do a dilated exam of his eyes, they describe the backs of his eyes as being very "blonde", or containing very little pigment. So, the ocular albinism has always been a possible diagnosis. Albinism is a genetic disorder that is a recessive gene. Adam and I have no knowledge of anyone in our families having albinism. Family members, if you are aware of anyone in our lineage having albinism, please let us know! Ok, get ready to look at the picture again. Most people with albinism do not have a macula (part of the retina that allows you to view objects with great detail). Ethan does have a macula, but its not shaped completely normal. Ethan does not have a fovea (a depression in the macula that provides acute eyesite). His retina is not completely without pigment. We learned today that people can have different degrees of albinism and that there are many types of albinism. Some people have near normal vision, while others are legally blind. Some can get driver's license, while others can not. The eye crossing that Ethan has can be a complication of albinism. The plan: there are blood tests to check for albinism. Dr. Drack tells us that this can be a long process to sort out as you might check for one type of albinism and have it come back negative, so you need to move on and check for the next type. Ethan had his blood drawn today to check for type OA2, the type Dr. Drack thinks he would most likely have. The blood is sent to a lab in Boston and will take 4-6 weeks before we have results on that test.
Wow, we walked out of there today saying "I thought his eyes were crossed?" We sorta feel like we just uncovered the tip of an iceberg today. We were very impressed with Dr. Drack. She was very knowledgeable and quick on her feet when coming up with diagnoses. For a couple hours it seemed the diagnoses were changing with every test that was performed. We feel very confident that we are at the right place to get things sorted out. We will go back to see Dr. Drack in 3 months. In the meantime, we will try the glasses with Ethan and pray that is the answer to his crossed eyes. Once Dr. Drack has the results of the MRI and genetic tests, she will be contacting us by phone. Please say prayers for Ethan that everything turns out good.
So, you ask, where was Aidan in all of this? We made the decision to leave him at home with Marie, Nana, Grammy, and Chrissy watching him (no, it did not take all 4 of them at once to watch 1 child...just 4 people to get all of the hours covered!). It was such a long day for Ethan that we are confident that was the right decision. We are told that Aidan would ask about Ethan and then say "EYES!" Aidan was a very, very good boy for everyone. We will need to make plans for Aidan to get to have a special day away with Mommy and Daddy.
With that, I think everyone in this house can say "eye" have had a long day! Thanks for everyone's thoughts and prayers for us so far...keep 'em coming!
Sunday, January 24, 2010
Just for Fun!
Thought we'd post some just for fun pictures of the boys. Nothing new and exciting here...just hoping and praying spring will come soon!
Sexy boots!
Playing "daycare"
Future drummer!
Saturday, January 9, 2010
Warm and Gooey!
What have you been doing on this cold January Saturday?
We've been making cinnamon rolls!
But, my recipe is TOP SECRET! Ok, I'll share with you...but only you! Don't go telling everyone about these, okay?!?!
Pioneer Woman's Cinnamon Rolls
4 cups whole milk
1 cup oil
1 cup sugar
2 packages active dry yeast
9 cups all purpose flour
1 teaspoon (heaping) baking powder
1 teaspoon (scant) baking soda
1 tablespoon (heaping) salt
1 cup melted butter (make sure you use butter, not margarine)
2 cups sugar
Lots of cinnamon
Mix the milk, oil, and sugar in a kettle and scald the mixture (heat until just before it boils). Turn off heat and leave to cool 45 minutes. When the mixture is lukewarm to warm, but NOT hot, sprinkle in both packages of yeast. Let this just sit on top for 1 minute. Then add 8 cups of flour. Stir the mixture together. Cover and let rise for 1 hour. After rising for 1 hour, add 1 more cup of flour, baking powder, baking soda, and salt. Stir the mixture together. (At this point, you could cover the dough and put it in the fridge until you need it...overnight or a couple of days. Just punch it down if it starts to overflow the bowl. But really, what are you waiting for...your family wants these rolls NOW!)
Sprinkle rolling surface generously with flour. Take half the dough and form into a rough rectangle. Then, roll the dough thin, maintaining a rectangle shape. Drizzle 1/2 cup melted butter over the dough. Now sprinkle with 1 cup of sugar and lots of cinnamon. Starting at the end opposite you, begin rolling the dough in a neat line toward yourself. Keep the roll relatively tight as you go. Pinch the seam to seal it. Grease your pan (or, if making caramel rolls, place caramel in the bottom of the pan). Begin cutting the rolls 1/2 - 3/4 inches thick, laying them in the pans. Don't overcrowd the pan! Repeat this process with the other half of the dough. Let the rolls rise for 30 minutes. Then bake at 375 degrees for 18 minutes. Invert onto wax paper and enjoy!
Maple Frosting
1 bag powdered sugar2 teaspoons maple flavoring
1/2 cup milk
1/4 cup melted butter
1/4 cup brewed coffee
1/8 teaspoon salt
Mix together all the ingredients and stir until smooth. It should be thick, but pourable. Then, generously drizzle frosting over warm rolls.
Caramel
1 stick butter1 1/2 cups brown sugar
2 tablespoons dark corn syrup
2 tablespoons whole milk
Place ingredients into a saucepan and allow to melt over low heat until combined. Allow to boil for a few seconds, then remove from heat.
It doesn't sound like spring is right around the corner...so, happy baking!
Tuesday, January 5, 2010
SNOW MUCH FUN!
Before the temperatures became frigid, Mom bundled us up and we went for a walk around the block...we LOVED the snow!
Now, back inside where it's warm for a little snack!
Monday, December 21, 2009
Merry Christmas!
The stockings were hung by the chimney with care, in hopes that Saint Nicholas soon would be there.
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