A little over a week ago I decided to put together a team for Alea for this weekend's buddy walk. We had been so busy with getting Alea home from the hospital that I hadn't really thought about it much. When I did think about it, I figured I was too late to the game and wouldn't be able to raise much anyway. I had written a post to refer people to a friend's team to raise money as it would go to the same cause. I then thought that it would be a good thing for EC and Keena, so I decided to create a team. The money is raised for the Utah Down Syndrome Foundation (USDF).
I set the goal at $500 knowing it would be a long shot at best to reach in just over a week. About 20 hours later, I checked the page and was blown away to find we had exceeded our $500 goal. It did not stop there. The goal has been blown out of the water. Who knew we would come so close to $1000. I am humbled by the generosity of people. I want to thank all of those who have donated. I cannot express in words what it means to me and my family.
The money raised will directly benefit Alea this next year as it goes to support the our USDF chater in their efforts to provide outreach, training, support, education, information, and activities for individuals with Down syndrome, their parents and families, and the community. As we learn more about Down syndrome and how to help Alea be her best, we will be leaning on USDF for education, training, etc.
If you would like to still make a donation you can here, http://www.firstgiving.com/awalkwithourangel .
Again, as a family we thank you for your kindness and support. For those we don't know, anonymous or otherwise, we are so grateful for your investment in our Angel Alea.
Love,
Chris, Jodi, Keena, EC and Alea
Thursday, September 23, 2010
Tuesday, September 21, 2010
My kid has a geneticist...neener neener neener :)
Update on Alea
Life as we know it, is starting to take form. We are adjusting to having a cute little baby at home. This last week, we had an appointment with a geneticist. As with previous experiences at Primary Childeren's Hospital, we were very impressed. Dr. John C Carey took all the time we wanted. I think he spent an hour and fifteen minutes with us answering all of our questions. He really helped us understand more about Down syndrome.
Major concerns with children who have Down syndrome are heart, thyroid, digestive issues. Alea is only presenting a problem with her heart, but it is structurally healthy, and it is just the Pulmonary Hypertension that we need to heal. It is getting better as she grows stronger each day. We meet with the cardiologist this week to see if she can get rid of her oxygen.
He told us that if we decide to have more kids, the chance of having another baby with Down syndrome is the same as any other woman at the same age. I think at our age there is a 1 in 400 chance. The possibility increases with age. He did say that if someone has a baby with Down syndrome in their 20s, there chances of a second baby with the 3 chromosomes become higher than normal.
Did you know that your kid has a 1 in 5 chance of being obese? Did you know 1 to 2 children develop cancer each year for every 10,000 children in the United States? Did you know that out of 1000 births, nine babies will have some form of congenital heart disorder? Did you know cancer has become the leading cause of death due to disease among children? Did you know that your child has a 5% chance of being ADHD? Did you know that as many as 1 in 110 kids have autism? OK, ENOUGH WITH THE SCARY STATISTICS. Think how you would feel if you were called into the Dr.'s office and given these statistics before you took your baby home. Scary!
He made the point that the difference between when we took Karina and Elise home and when we took Alea home was the perceived necessity by the medical world to tell us all of the statistical possibilities Alea has of getting health issues more common with children who have Down syndrome. He said for example the chance of Alea getting luekemia is greater for her than it is for our other two girls, but the possibility is still rare, less than 1%. Does this make sense? I guess what he wanted us to know is that all kids have health concerns, we were just being told most of them at once with Alea, which I must admit, was a little overwhelming. I thought it was an interesting perspective.
Life as we know it, is starting to take form. We are adjusting to having a cute little baby at home. This last week, we had an appointment with a geneticist. As with previous experiences at Primary Childeren's Hospital, we were very impressed. Dr. John C Carey took all the time we wanted. I think he spent an hour and fifteen minutes with us answering all of our questions. He really helped us understand more about Down syndrome.
Major concerns with children who have Down syndrome are heart, thyroid, digestive issues. Alea is only presenting a problem with her heart, but it is structurally healthy, and it is just the Pulmonary Hypertension that we need to heal. It is getting better as she grows stronger each day. We meet with the cardiologist this week to see if she can get rid of her oxygen.
He told us that if we decide to have more kids, the chance of having another baby with Down syndrome is the same as any other woman at the same age. I think at our age there is a 1 in 400 chance. The possibility increases with age. He did say that if someone has a baby with Down syndrome in their 20s, there chances of a second baby with the 3 chromosomes become higher than normal.
Did you know that your kid has a 1 in 5 chance of being obese? Did you know 1 to 2 children develop cancer each year for every 10,000 children in the United States? Did you know that out of 1000 births, nine babies will have some form of congenital heart disorder? Did you know cancer has become the leading cause of death due to disease among children? Did you know that your child has a 5% chance of being ADHD? Did you know that as many as 1 in 110 kids have autism? OK, ENOUGH WITH THE SCARY STATISTICS. Think how you would feel if you were called into the Dr.'s office and given these statistics before you took your baby home. Scary!
He made the point that the difference between when we took Karina and Elise home and when we took Alea home was the perceived necessity by the medical world to tell us all of the statistical possibilities Alea has of getting health issues more common with children who have Down syndrome. He said for example the chance of Alea getting luekemia is greater for her than it is for our other two girls, but the possibility is still rare, less than 1%. Does this make sense? I guess what he wanted us to know is that all kids have health concerns, we were just being told most of them at once with Alea, which I must admit, was a little overwhelming. I thought it was an interesting perspective.
Monday, September 13, 2010
This Week in Review
This week was a good week. Alea is growing more and more everyday. Her sisters love spoiling her. We met with Kids on the Move and they came over and walked us through some of the process for Alea's early intervention. We will probably meet with them sometime this week. We had a friend come over and take some pictures of Alea. She cooperated for the most part. I have thrown in a picture from my daddy daughter date to the Utah State Fair with Keena and EC. I am tired tonight, so the week in review is a short one. Thanks for all your support. Feel free to drop a note, we like to hear from you.
Now this week in pictures
Thursday, September 9, 2010
What is Normal?
In one of the classes I am taking for my masters, a professor told us that in counseling it probably isn't the best to use the word "normal". I remember thinking it a bit extreme and oversensitive. My opinion hasn't changed, mostly because I have come to realize that normal is so relative and is unique to every individual and situation.
I ran into a friend in the store the other day who asked how things were. I told her that we were trying to re-learn how to parent a newborn after 7 years on the bench. She laughed and said, "Trying to adjust to the new normal?" She hit it on the head, that is exactly what we are doing, and it has nothing to do with Alea's Down syndrome. It has everything to do with, "Holy cow I don't remember this stuff being so exhausting".
Those who know me, know that I am a thinker. I always have something in my mind I am churning. I admit, I tend to over think things quite often. I have thought about what she said to me on Saturday through today, almost a week later. Isn't it normal to be adjusting to a new normal? Aren't we all trying to adjust to a new normal? If we aren't, shouldn't we? I see life as a constant effort to better yourself with change. A video game of sorts, where no matter how good you get at the level you are on, there is always the next level. LOL, seems kind of silly that after all that thinking I came to that conclusion. Oh well, you all know I am anything but normal.
So enough of the deep thoughts with Jack Handy, how about the good stuff, an Alea update. She is so cute. You really should schedule to come meet her. We have been spoiled by friends and neighbors. One of the worries I had/have is, due to the diagnosis and hospital stay, the newness and excitement of having a new baby would get lost somewhere in the shuffle. That has not been the case, in fact quite the opposite. We are so glad that our family and friends are so anxious to come and meet our little angel.
I learn more and more about DS everyday. I had no idea that they are so fragile, and their health is always a concern. There are so many things I could be worrying about as I read others blogs or articles about the syndrome. It can get a little overwhelming, but I can't seem to go there for some reason. I am just grateful she is here. After we lost Austin, people would always ask if I wanted a boy. My truthful answer was always the same, "I just want it to be healthy". For the most part that is what we got. Of course there is the hypertension and the worry and dangers that surround that, but she is home. She is eating good, nursing in fact, which I have heard is sometimes a challenge for babies who have Down syndrome. She would be our best sleeper if the dr. wasn't asking us to wake her up at least after 5 hours to feed her. Did I mention how cute she is?
Sometimes the thoughts above cause a little guilt. Am I hoping that her case is minor, or am I wishing she just didn't have it? Am I hoping that she is a healthier than a 'normal' kid with Down syndrome? Interesting questions indeed. Do I wish she didn't have it? That is a tricky one I guess. Would things be easier for her if she didn't? Absolutely! But after a month with her, I guess it seems 'normal' that she has it, so no sense wishing for something that isn't or never will be (at least in this life). I have come to the conclusion that I am just like any 'normal' parent. I want the best for my daughter. As with all of our children, we want what is best for them and want them to do their best. That is sufficient for me, and Alea will be no different. I guess that means, she is normal.
I ran into a friend in the store the other day who asked how things were. I told her that we were trying to re-learn how to parent a newborn after 7 years on the bench. She laughed and said, "Trying to adjust to the new normal?" She hit it on the head, that is exactly what we are doing, and it has nothing to do with Alea's Down syndrome. It has everything to do with, "Holy cow I don't remember this stuff being so exhausting".
Those who know me, know that I am a thinker. I always have something in my mind I am churning. I admit, I tend to over think things quite often. I have thought about what she said to me on Saturday through today, almost a week later. Isn't it normal to be adjusting to a new normal? Aren't we all trying to adjust to a new normal? If we aren't, shouldn't we? I see life as a constant effort to better yourself with change. A video game of sorts, where no matter how good you get at the level you are on, there is always the next level. LOL, seems kind of silly that after all that thinking I came to that conclusion. Oh well, you all know I am anything but normal.
So enough of the deep thoughts with Jack Handy, how about the good stuff, an Alea update. She is so cute. You really should schedule to come meet her. We have been spoiled by friends and neighbors. One of the worries I had/have is, due to the diagnosis and hospital stay, the newness and excitement of having a new baby would get lost somewhere in the shuffle. That has not been the case, in fact quite the opposite. We are so glad that our family and friends are so anxious to come and meet our little angel.
I learn more and more about DS everyday. I had no idea that they are so fragile, and their health is always a concern. There are so many things I could be worrying about as I read others blogs or articles about the syndrome. It can get a little overwhelming, but I can't seem to go there for some reason. I am just grateful she is here. After we lost Austin, people would always ask if I wanted a boy. My truthful answer was always the same, "I just want it to be healthy". For the most part that is what we got. Of course there is the hypertension and the worry and dangers that surround that, but she is home. She is eating good, nursing in fact, which I have heard is sometimes a challenge for babies who have Down syndrome. She would be our best sleeper if the dr. wasn't asking us to wake her up at least after 5 hours to feed her. Did I mention how cute she is?
Sometimes the thoughts above cause a little guilt. Am I hoping that her case is minor, or am I wishing she just didn't have it? Am I hoping that she is a healthier than a 'normal' kid with Down syndrome? Interesting questions indeed. Do I wish she didn't have it? That is a tricky one I guess. Would things be easier for her if she didn't? Absolutely! But after a month with her, I guess it seems 'normal' that she has it, so no sense wishing for something that isn't or never will be (at least in this life). I have come to the conclusion that I am just like any 'normal' parent. I want the best for my daughter. As with all of our children, we want what is best for them and want them to do their best. That is sufficient for me, and Alea will be no different. I guess that means, she is normal.
Sunday, September 5, 2010
Week In Review
What a week. Looking back to a week ago tonight we were so excited for our baby Alea to come home. we finally brought her home on Monday. She is an amazing little girl. The instant spirit that entered our home when she arrived is truly amazing. There is no doubt that she is one of Heavenly Fathers most choice spirits.
This last week we have been relearning how to parent. It has been 7 years since we brought a little baby to our home. The two older sisters love their sister very much. They go and check on her every 2 minutes to make sure she is ok. As for Jodi, she is trying to get rest when she can. Alea is a pretty good sleeper though. I think she would sleep through the night if we would let her. The doctor wants her getting her feedings every 4 hours though.
The hardest thing about having her home has been the oxygen chords. We are getting better at lugging them around the house. In a way it is like house arrest, as we can only go as far as her oxygen chord will reach. They do have a travel tank, but the Dr. has told us that we shouldn't take her out much until 3-6 months. He actually said, "I wouldn't take her to church until she is 5, but we know that isn't practical". Who says we have to be practical? What has been an eye opener for me is how dangerous illness is for a baby who has Down syndrome. We are being super careful!
Well, not sure what to add. I am going to be doing another "In their own words" in a couple of weeks, so if you want the girls perspective on anything let me know and I will ask them. Thank you everyone for your support.
Now this week in pictures:
Friday, September 3, 2010
In Their Own Words
I want to have this as a regular feature on the blog. I will interview the girls about their thoughts and experiences being big sisters to our angel. In this first edition, they were interviewed the night Alea came home. They share their excitement as well as their new understanding of Down syndrome.
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