R-Word Campaign

I know it’s been a little while, but I was waiting for the month of March to end so I could tell you all about everything at one time.

As many of you know, I am the NJHS Advisor at the middle school. Our middle school started a campaign last year called Check it at the Door. It is a campaign where we teach and model to students about leaving all prejudices, bullying, etc. outside the school building. NJHS had the month of March and we focused on the R-Word Campaign.

We started off our campaign by having a school wide assembly. I introduced myself and spoke about the girls. Some of my NJHS members introduced students in our school that have various disabilities. The point was to show the students that even though they may look different or need different things to get by in life, they are still interested in many of the same sports, music, hobbies, etc. We also had a guest speaker! His name was Shane. He is a Special Olympic Athlete and attends a high school at one of our neighboring counties. He spoke about the sports he plays and the Olympic medals he has won. Then, he spoke about what the r-word means to him. We wanted to show the student body that everyone should be treated equally and just as nicely as the next person. This may only be my 5^th year teaching middle school, but that assembly was the BEST assembly I have ever been to. I have never heard those kids so quiet and responding so well at appropriate times.

During the rest of the week, my NJHS students set up in the cafeteria during lunch shifts and asked students to sign the banner to pledge to “Spread the Word to End the Word.” When students signed the banner, they received a wonderful bracelet to show their support and share their accomplishment with others.

The rest of the month consisted of little ideas, such as passing out yellow and blue pencils on World Down Syndrome Day, wearing crazy socks on World Down Syndrome Day, and conducting a door decorating contest for those teachers/classes that chose to participate. There was no prize, just a ribbon that would be taped to the door. It was the support and creativity that mattered. Everyone who participated did a wonderful job and I hope they choose to do it again next year! J

At the end of the month, I received word from the contact that Brandon uses that there may be some extra money that we can use to make the middle school a Project Unified School. J I am so excited to say that we have decided to take on this endeavor and are working up a plan to turn in to see if we can get the equipment we need. J We are hoping to start this in the Fall. 

Trisomy Twenty What!?

The science geek in me wants to take today, World Down Syndrome Day, to explain what Trisomy 21 is and how it happens.

To begin, our sex cells (egg & sperm) go through a process called Meiosis. This is how they "reproduce." During meiosis, the number of chromosomes is cut in half (Chromosomes carry our DNA from parent to child.). This happens so a baby gets half its chromosomes from mom and half from dad. An egg cell has 23 chromosomes and a sperm cell has 23 chromosomes. 

Men produce sperm throughout their lifetime. Women are born with all the eggs they will produce. At times, when an egg goes through Meiosis, the chromosomes don't split correctly and an egg will end with 24 chromosomes rather than 23. Some scientists say the eggs are "old," because they have been "alive" for how ever many years the woman has been alive. When this particular egg becomes fertilized by sperm, the embryo will end up with 47 chromosomes. Humans have 46 chromosomes. 

Shortly after the girls were born, I read books and articles about Down Syndrome, to see if I could learn more about it and how to better Lorelei's future. For about the first month, I felt like it was my fault because my eggs were "old." Why!? I was only 27! I just didn't understand. It's truly amazing how the human body works, so why would an egg that was so young not do its job correctly? I now know better, but it took me a while to accept it. 

Back to the science...

These 46 chromosomes are split into 23 pair.

For Down Syndrome to occur, the egg that is fertilized will have 24 chromosomes and the sperm will have 23. There will be 3 chromosomes on #21, hence Trisomy 21.

Just as with anything else, Down Syndrome has a spectrum. Individuals will be affected differently and will all be different from each other. Individuals with DS are not cookie cutter, just as typical individuals are not cookie cutter. It is all a learning process and we are doing it together!

I hope you enjoyed the science lesson! :)

We hope you "Rocked Your Socks" and had a wonderful World Down Syndrome Day!

Mission Possible

We returned from a WONDERFUL cruise a few weeks ago.

 It was the Mission Possible Down syndrome Conference, and it just happened to be on a cruise ship! J It was a little hectic at times with the girls, but it was a great experience and we all had a good time. We got so much information that we had never even heard of and are still in the process of sifting through it. Most of the information was about the CMF Protocol and Neurodevelopment.

The CMF Protocol is a list of vitamins and medicines that have been studied and analyzed and used to help children with Down syndrome. Here is the link to the Protocol: 

http://changingmindsfoundation.org/documents/links.html.  

Brandon and I were a little shocked that we hadn’t heard of ANY of this from our friends or from anyone in the Down syndrome Association of Northern Virginia. We haven’t really sat down and discussed what we want to try, if anything, but Brandon did speak to our pediatrician yesterday when he took the girls and he gave us his opinion on all of them. Most of the vitamins he said would be no problem to try. As far the Prozac, he says we need to talk to Dr. Anderson at the Down syndrome clinic to get her opinion and thoughts about the process. Also, the Focalin XR would only be used if Lorelei were diagnosed with ADHD.  The use of these vitamins and medicines are said to increase the neural connections in the brain. In other words, it helps children to remember what they have learned and continue to use it and increase the complexity of the skill as they practice.

The Prozac seemed to be the most controversial. There has only been 3 studies done with the Prozac and they were all done on mice. They were all successful studies, but they were mice… Here are some links to the articles of the studies that have been done:

http://www.jneurosci.org/content/30/26/8769.full

http://www.ncbi.nlm.nih.gov/pubmed/16624293?ordinalpos=1

http://www.ncbi.nlm.nih.gov/pubmed/20592198

http://www.changingmindsfoundation.org/documents/prozac.html

I found this reaction to the CMF Protocol while conducting some research:

http://www.down-syndrome.org/statements/2106/?page=1

Brandon and I kind of fall between the let’s try it and why do we need to? We understand that people want their children to be “normal,” but shouldn’t society learn to accept everyone for the differences? Why do we need to make our children “fit” in with everyone else? I think this was the only issue Brandon and I really had with the conference. It seemed that a lot of the families are out to make their children “normal,” to fit in with everyone around them. Yes, we all want our children to be successful, but there is nowhere that says they have to be the same as everyone else. Some of the speakers referred to “our children with Down syndrome need…” Yes, they all have Down syndrome, but just like typical children, they are all DIFFERENT. My child may not need the same thing your child does.

It seemed from talking and reading other’s blogs when we returned from the trip, that a lot of these families did not have good experiences with Early Intervention. We have had a GREAT experience and Lorelei has excelled so much because of this. Due to the bad experiences, many families turned to Neurodevelopment. Here is a website that discusses the background and gist of neurodevelopment:

http://www.nature.com/news/neurodevelopment-unlocking-the-brain-1.10925

For the most part, it is being said that physical therapy and occupational therapy is not done correctly for children with Down syndrome. With the low muscle tone, these children are to do things a little differently in order to develop the muscles correctly. Read the website above for full information about the process! It’s rather interesting, but we aren’t sure if we agree with all of it.  Here are some other resources:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1367862/

http://www.neurodevelopmentcenter.com/

As of right now, we are sticking with our Early Intervention team. Lorelei is doing fantastic! We hope to start speech therapy soon and get that going. J

We would love to hear your feedback on these new pieces of information that we learned. We will continue talking and working with our doctors to get their input and thoughts.

On a side note: Lorelei does NOT have a food allergy!! J Her cheeks are just extremely dry and we have to constantly put Vaseline on them to help.

Project Unify

     During the spring of 2012 Maria came across an inspirationalarticle through our local Down Syndrome group .  It told the story of a set of triplets in Maryland.  At their high school they offered Unified Sports.  More specifically the brothers were able to compete together in Unified Bocce Ball during the winter season.  

     This gave Maria and I’s our first idea of how we could make a difference in our school system.  I went through several chains of contacts to find out more information before approaching the administration.  I called Frederick High School’s athletic director, then the Special Olympics rep for their area in Maryland. I was then passed to the Special Olympics rep for our area.  Next I went to our athletic director with the information I had come across.

     He loved the idea.  His own son had competed in the Special Olympics so he was very interested in the idea of including Unified Sports in the high school.  Our first goal was to pick a sport that would allow for great variances in ability.  We decided upon bowling.  By using the bumpers and ramps for those that needed them, ever athlete was able to experience success at some level.  The biggest problem that we ran into was trying to get partner athletes out for the sport.  We tapped into our bowling club here at the high school and they helped tremendously.  

     The experience was an interesting one in the beginning.  We had to help the partner athletes understand that they didn’t need to baby any of our athletes with challenges.  The partners weren’t there to “help” in the traditional sense of the word.  We wanted them to work together and to become peers.  By the end of the season everyone was working well together and you could see the friendships that had formed. 

     Our most recent sport is Bocce Ball and Cornhole.  We began this sport last week and are still hurting for partner athletes.  There is a core group of students that want to participate in Unified Sports but they are always in season for other sports.  This causes a conflict with schedules.  The season has begun well and the students love working together. 

    My next goal is to expand our program to other local high schools.  I would also like to get our high school more recognition in the local media for leading the way with this new program.

Game Shirts

Game for Respect

     The awareness week in October was finished off with a football game.   Here we took donations for a local organization which helps to provide job opportunities for people with intellectual or physical challenges.  We wanted the money to go somewhere local and make an immediate impact in our community.     
     I was able to get the game mentioned in the newspaper, it was in the community calendar,  it was even mentioned on the local high school football show.  The game we picked ended up being for a district championship as well.  This made us all excited about the huge crowd that would show up.    
  
     There were a few volunteers that sold t’shirts, had people sign the banner, and took donations.  My parents were even among this group.  Unfortunately we fell short of my donation goal.  I was hoping for over $1,000 but only raised about $400.           The reason was mainly on my shoulders. I was not aware of the toll that this event would take on me.  Trying to plan everything out on my own was not the best thing for my stress levels.  For those of you that know me, you know how high strung I am at all times.  You should be able to imagine how this event was.  I should have asked for more help from the beginning.  In my drive to make a difference I forgot that things are much easier when you ask for help.  I was actually coaching during the game so no matter what I planned beforehand I was useless during the event.  I guess I was under the idea that things would just magically work out.  I felt that everyone would feel strongly about our cause and come running to donate.  I’m not sure if it wasn’t placed properly around the field, if we didn’t give enough information, or just poor planning all around.    
   Let’s just say that next year Maria and other teachers will be in charge of a lot more. 

     As mentioned in the post a few days ago, we had a lot going on this past fall.  I had football season going on, organizing and running the R-Word campaign, organizing and running the Game for Respect, a few public speaking events, and organizing our first Project Unify season.  During all this I was leaving Maria to almost act as a single parent.  Any football coach, wife to a coach, or family member of a coach knows the time that goes into the season.  While at school I would plan these events (during my planning period only) then go to practice.  I usually made it home in time to read the girls a bedtime story.  My “early” Thursdays were nice because I also got to help with baths.  Maria is an amazing woman for all that she puts up with and does every day.  But I notice it and realize how lucky I am a little bit more during football season.  

     

Public Speaking

Speaking

     Along with the awareness week I gave a 30 minute talk during the school day.  I spoke with 8^th, 9^th, then 10^th graders.  Our administration is understandably against whole school assemblies.  Needless to say I was nervous on Monday about what I would say and how it would go. 

     This was going to be the largest group of people I have ever spoken in front of and this time I was speaking about something very personal.  I talked about Lorelei, her experiences, and our expectations.  The session was led off by showing an r-word video produced by Special Olympics Virginia.  I then explained how fortunate our daughter is.  They were astonished when I gave the statistic that 93% of fetuses are aborted if they test positive for Down Syndrome.  Even now this stat is amazing to comprehend.  I then told of Lorelei’s surgeries and struggles.  But I was never far off from mentioning her successes and how well she is doing. 

     She would always finish the show for me by strutting her stuff onto the stage so I could hold her in my arms and wave hello.  I left each group with a final thought that Lorelei, or any other person, is not defined by having Down Syndrome.  After all it is something that she has.  It is not who she is.  I also wanted them to not feel bad for someone with Down Syndrome nor for Maria and I.  I wanted them to understand that she was just like them, a child growing up and learning as she goes.  It just may take her a little bit longer to learn it.

   The sessions went better and better each time.  I got more confidence and things flowed easier.  By the end of the week the administration commented that they felt it was the best and most informative sessions the students had gone to in a while.  They were even impressed at how well the students acted during the session.  This made me feel even better about it. 

     Maria will be speaking to the middle school during their awareness week and r-word campaign on March 5th.  It’ll be a younger crowd but we expect them to do just as well with the cause. 

Here are some pictures of the banners that the we and the students signed.

Both Banners

First Banner

 Second Banner

   

Next up: Game for Respect

The awareness week was finished off with a football game where we took donations for a local organization.  This organization helps provide job opportunities for people with intellectual or physical challenges.  Tomorrow I’ll let you know how that went.  

New Ideas

     This fall began a mission of Maria and I’s.  By no means is this mission our own idea nor are we leading the way. We are simply following examples set forth by other people.

     In October the high school that I work for held an awareness week for people with disabilities and a fundraiser football game that we called The Game for Respect. We also began a program called Project Unify at the high school. The middle school which Maria works at is also holding an awareness week this spring. R-Word The awareness weeks were ideas that we got from a campaign called “Spread the Word to End the Word”. I contacted our local Special Olympics representative to see how we could work together. I threw out the idea of having students sign a banner and take the pledge to stop using the “r-word”. For those that may not know we are talking about the word “retard” or “retarded”. They loved this idea so much they were willing to buy and send me 700 wristbands to give to the students when they signed the banner. So this whole campaign was completely free to myself and the school. Anyone that works in a public school system knows that free makes things A LOT easier to get accomplished.

     The week went well. I had volunteers from my Wildcat Buddies help to inform students about the banner and what it meant. The guidance department even gave me a list of all the students in the school. As students came to sign the banner they had to give us their name and we would check them off, sign, and then hand over a bracelet. Our goal was to have the entire school sign the banner. Of course we had to go searching some students out. I even went and addressed some students directly if they were against signing the banner. I simply would ask what they were against and then explain what this pledge and this word meant to me, Lorelei, and some of their fellow students. Every student that I spoke with saw that our cause was justified. We finished with only about 30 of the 750 students not signing the banner. It was a great accomplishment for our first go around. We are hoping the middle school has similar success.

Speaking
     Along with the awareness week I gave a 30 minute talk during the school day. I spoke with 8th, 9th, then 10th graders seperately. Our administration is understandably against whole school assemblies. Needless to say I was nervous on Monday about what I would say and how it would go...

 To be continued ...

Well Hello There

So … apparently Maria and I have discovered that we are not destined to be professional bloggers.  Our last post was all the way back in July just as football season was fast approaching.  To catch everyone up on recent events, and some not so recent, I plan on creating several posts hitting different topics from the past months.  

To get started I’ll mention our last visit to UVA.

Back on January 25^th we took Lorelei to the Kluge Center down at UVA for her meeting with Dr. Anderson.  Lorelei took a few moments to get warmed up but then performed excellent.  Our fear was that she was doing these wonderful things at home like climbing on EVERYTHING and communicating through signing but would be too shy and not show this to the doctor.  There was no disappointment on this day.  She did very well as the doctor would pull animals out of the barn and Lorelei would sign many of them.  Ofcourse she would go with “dog” on anything she wasn’t sure of but would soon hit the correct sing if she heard the word.  After about an hour with Dr. Anderson she told us that Lorelei was doing wonderful and to begin working on coordinating different ideas such as what animals say. 

Lorelei’s eyesight is also the next big step.  We are hoping to get her vision checked soon so to be sure she isn’t having troubles.  Nothing has really seemed apparent but we are just trying to be proactive. 

Let me add in the finish that Lorelei’s ability to do the things she can has been nothing but amazing to us.  She works so hard and wouldn’t be where she is without the great example set by Mikaela, the hard work and love of Maria, and the dedication and caring that Bethany has shown our two angels.  I can’t thank all of you enough.

Long Time....

We know that it has been an extremely long time since we have posted.  This summer has come and gone in a blur and I don't know if we have had much time to just sit and breathe.

We did go on our first family vacation with some of our very best friends (also on their first family vacation).  We went to the beach for a week and we had a BLAST!  :)  Mikaela LOVED the sand, water, and everything about it.  Lorelei was not too convinced.  She liked to eat the sand (Yuck!), but was not too thrilled with the water. Everyday, Lorelei would play for a while and then end up falling asleep.  :) It took us about 2 days to get the routine straight with two toddlers and a baby, but once we got it, it was smooth sailing.  We believe that next year will get easier and all of us are already looking forward to it! :)

We spent a week with Grandma and Grandpa Erwin while I had to attend class on campus (I have decided to pursue my Doctorate degree).  I think the girls enjoyed spending so much time with the grandparents and I know that the grandparents enjoyed that! J

The girls then spent a long weekend with Abuelo and Abuela while Brandon and I took a vacation on our own.  Everyone enjoyed that trip! J

Grandma and Grandpa Wakefield just left this morning! We had a wonderful time with them and are so glad they were able to come and spend time with the girls as it’s been a year since they had seen them and A LOT changes in a year.

Mikaela is growing like a weed.  She is walking/running everywhere and won’t sit still for ANYTHING.  She is a handful, but so funny.  She loves her sister and they have begun to interact even more and it’s just fantastic to watch! J Today, they were playing with a hat and when Lorelei got it she would keep it away from Mikaela and they were both just laughing up a storm.  I am so thankful that they have each other!

Lorelei is doing fantastic!! She is walking more than crawling now (WOOHOO!!), and is only 17 months old!  THAT IS AMAZING!! J She does where little orthotic boots for half of the day just to be sure that her bones grow correctly because she turns her feet in a bit.  Other than that, she is ahead of the game and she is having a great time getting there.  Her tubes in her ears are doing great.  We haven’t had any issues (knock on wood) with anything! J We go back to Dr. Early in November to get them checked out and be sure everything is still okay.  When we went to the Down Syndrome Clinic in May, they drew some blood to check her thyroid.  One of the numbers did come back a little high so they endocrinologist suggested to put her on medication to prevent any issues with hyper or hypo-thyroidism.  She has been doing great with the medication and I believe it has helped.  When we had gotten her results back she had stopped eating as well as she was and we believe that was the culprit.  There are not problems eating now!  We will get the numbers checked again next month to be sure everything is still okay.

God has answered my prayers and we are beginning to become advocates for local families. J We met the family that the NICU had contacted me about a few months ago.  J We had them over for dinner earlier this month and their son is ADORABLE! J We hope to keep in touch with them and start a good support system.  I was contacted by the NICU again last week about another family. I have called them and am waiting to see if I hear back. I am hoping we will have a great group of parents in the near future! 

Busy Weeks

The next couple of weeks should be fun.  

It’s 5:00 am and Maria and her mom are packing the car for the trip.  Maria got Lorelei out of the crib and right on cue Mikaela woke up screaming. Lorelei is currently in route with mommy through the fog and mist to the University of Virginia to have a few things taken care of.  She has failed the hearing test in her right ear ever since she was born.  The amount she has failed by is very small though.  They feel that cleaning her ears of wax will help her to pass the test.  To no surprise a 14 month old baby will not sit still while a doctor sticks things in her coffee stirrer sized ear canals.  Therefore the doctor this morning will put her under anesthesia, clean her ears, and then test her hearing through brain function while she sleeps.  If he finds that there is water behind the ear drum he will install tubes for the first time.  He has told us that he would like to stay away from this if possible.  I am simply waiting to hear the results now.  That’s it for this week.

Next week Lorelei will make another trip to UVA for an appointment at the Kluge Children’s Rehabilitation Center.  This will be her one year checkup to see how she is developing.  We are all very excited for this appointment.  We have no idea what they will say but are hoping to hear something about how she’s doing wonderful and even possibly “above par” for a child her age.  Ofcourse as long as they don’t tell us that she’s behind somewhere in the developmental process or find something wrong we will be extremely happy.  She is up to the point of cruising along the couch, walking while holding your hands, and even standing independently for a short period of time.  We’ll see what they say. 

Also in week two of this adventure we will begin a process that we were first exposed to through the Noah’s Dad blog.  We have attempted to put Lorelei on the treadmill to help her learn the function of walking.  You never realize how heavy 20 pounds are until you lean over a treadmill in a squat position and are holding the weight out in front of you.  She gets heavy quick.  So now our physical therapist has created an apparatus that stands over the treadmill.  It will support Lorelei so we can work on her foot movement and not focus so hard on holding her up.  We are hoping this advances her walking even faster.  There you go … week 2 in the books!

Now if you don’t mind … it’s time for some random thoughts. 

At my high school it is approaching that time of year when the seniors are working their way out of our system.  Yesterday was the senior cap and gown class picture.  We have one student from the special education classroom that is going to cross the stage this year.  He was all decked out in his maroon cap and gown like all the other male seniors.  You could even tell he was doing his best to sit nice and tall in his wheelchair.  As I looked at our modest number of around 200 seniors and how they all looked so nice and as one big group I noticed something.  Let’s call it the “Cut Out Effect”.  Off to the side of the front row I see a student slightly away from the rest of the group.  He is all dressed to be in the picture and I am sure he is in it but maybe only slightly.  This is my senior student who’s in a wheelchair.  When looking a little closer I felt that something was wrong.  It bothered me that this student was put on the outskirts of the group.  To me this epitomized the apparent mentality of our school and most of society.  “Let’s separate this kid that’s a little different from the rest of the group, not INCLUDE him.”  I am not saying that he should have been in the middle of the picture and the focus of everything.  I would just like to see these students incorporated into the group.  Put him a few students in or something.  It became even more apparent to me how segregated these types of students are from the general population when the seniors finished their picture.  As they all walked away from the bleachers, all 200 seniors walked directly past the student in the wheelchair.  Not one of them acknowledged him being there.  No one looked at him.  No one said hello.  NOTHING!   Am I reading too much into this?  After watching this scene unfold I was speaking with another teacher.  I understand that I may be more aware of this sort of thing due to my personal situation.  But am I too aware?  Am I too politically correct now?  Am I making a big deal of nothing?

What do you think?

Inner Battles

While having a conversation with another parent of a child with Down syndrome they said “we are very proud that our son has Down syndrome.  Our daughter introduces him as ‘my little brother and he has Down Syndrome’”. 

The battle that I find myself fighting is where I stand in this thought process. I am in no way saying that these parents are wrong or anything of the sort.  It just causes a question in my mind. 

 I am very proud of Lorelei and am in no way ashamed of her having down syndrome.  However, I never feel that I want to introduce her as this.  To me she is not a “Down’s kid” nor does it define her.  She is just another kid.  She will learn and play along with everyone else.  She may end up being a little slower to do so but that’s nothing new.  Children progress at such varied rates anyways.  She already can stand, cruise along the couch, sign “more”, “dog”, and “all done”.  I am a proud parent … correction … we are very proud parents of a child with Down syndrome. 

This leads me into another debate that I am having with myself and I discussed this with Maria a few weeks ago.  It was really brought to my attention after another conversation I was having with a parent of a child with Down syndrome.  He informed me that in school systems in VA, siblings of children with disabilities are labeled as “high risk”.  For those of you that don’t know this means that they are likely to fall behind academically and socially.  It makes me almost feel bad having a shirt or sticker that says “proud dad of a child with down syndrome”.  The struggle isn’t because I have a disagreement with this statement. On the total opposite end of the discussion I am very proud of Lorelei.  The struggle arises when I think about Mikaela.  I never want her to feel that I am supportive of Lorelei and not her.  I want to be sure to show that I love both of them, am proud of both of them, and am in full support of both of them.  I want a shirt that says “proud dad of two amazing daughters” with the Down syndrome ribbon in the background or something along those lines. 

Some victories to tell you about:

I have begun a campaign at the high school I work for to create a few “Unified” sports programs.  It appears that we will be beginning a Unified Bowling team at the high school.  It will be a varsity sport pairing an athlete with intellectual disabilities along with an athlete from the general population.  We are the first high school in this entire part of VA to try a program like this.  The whole point is to get these kids working together and to allow the students that are usually in a self-contained classroom to get out and interact and show off their abilities to students that they normally couldn’t work with.  I’m really excited and am hoping to have a winter indoor bocce-ball team and a spring track and field team.  We’ll see how it turns out.

I am also working to have a disabilities awareness week where students can take the pledge to not use the word “retard” anymore.  I hope to also have a few speakers and show some informational videos.  I chose October because as you all know it’s National Down Syndrome Awareness Month.  The week would begin with the Buddy Walk in Washington DC on the 20^th.  Then do the week of speakers and videos and finish the week on Friday the 26^th with a benefit football game to raise money for the local workshop that helps find and provide jobs for people with disabilities.  I’m really hoping that this works out.

Meeting New Families

I feel like I have so much to write that I have no clue where to start! :)

To update, both girls are doing fantastic! :) Mikaela is still only taking a few steps on her own, but we will get her walking soon enough.  Lorelei is pulling herself up all over the place, bear crawling, and has even gotten bold and is standing without holding on to anything for 30-45 seconds at a time. We are making progress and are so excited about it. :)

We had a wonderful break with Grandma and Grandpa Erwin and Abuelo and Abuela.  We enjoyed a lot of family time and taking lots of pictures! :)

While we were in VA Beach, we got together with two other families that I met through Facebook.  Both families have a boy with Down Syndrome.  One boy is 7  months old and the other will be a year old later this month.  Thanks to Noah's Dad.com, we all "met" and have been keeping in touch with each other.  We finally got to meet in person and had a wonderful time!  It was refreshing to talk to others that know what you are going through and where you are coming from and feel the same you do.  Meeting families that may be having a harder time than we did/are, also puts everything in perspective.  I feel like what we had to go through is so minuscule compared to others!  My heart just goes out to those families.  I wish I could do something for them, but I will just be here if they need me.

We also took the girls to the beach for the first time.  We went for a photo shoot so we didn't really "play."  Plus, it was chilly and windy so we didn't want to keep the girls out there very long.  Lorelei wanted to eat the sand.  Mikaela wasn't sure what to think about it. :) It was fun to watch them play and just makes me more excited for our trip to Myrtle Beach in June.

I received a message today from one of the nurse practitioners at the NICU.  She was asking if I would be willing to talk to a mother who recently had a baby boy that was born with Down Syndrome.  I was so ecstatic when I read the message! :) That is what we want to do! Brandon and I want to be advocates.  I am not a writer and find it hard to find time to blog every day, so I don't think we will be getting any recognition for that.  I will not be writing a book like the recent Bloom:  Finding Beauty in the Unexpected by Kelle Hampton (a FANTASTIC read!!), so I won't be telling my story to people that way.  I want to tell my story in person. :) We haven't been through a lot compared to other families, but we still have a story and it will continue for a very long time.  I want others to know that this is okay and that we wouldn't want it any other way.  I want to get the word out there somehow!  I want others to know that if they are lucky enough to have a child with Down Syndrome, it will be okay!

Flying Off the Radar

Let me begin with one of our usual posts ... the girls are doing amazing!  Maria and I just purchased a new camera so that we can capture all of the girls' amazing moments.  It's a really nice Canon camera which you can attach different lenses to and that sort of thing.  Tonight we took 100 pictures just messing around with the girls.  It's actually kind of ridiculous.  In a way it's really weird as well.  All of my youth I grew up with a camera in my face thanks to my loving mother.  I always said that I would never do that or take as many pictures as she does. Now look at me, photo expert starting day 1!

New developments at school.  I have recruited several athletes at our high school to form a group called "The Wildcat Buddies".  We spend time doing crafts, playing games, and eating lunch with the students in the special education classroom.  (Even typing "special education classroom" somehow seems wrong.  There's gotta be a better way to say it.)  So far I'm loving it and I believe the students are really bonding and having a great time.


NOW... to the whole thing that drove me to write this post and fly off the radar for a bit.  Somehow I have missed the coverage in the news about a lawsuit case taking place out in Oregon.  In a short and rough synopsis a couple (Ariel and Deborah Levy) filed a "wrongful birth" suit against a hospital.  Apparently they didn't do the test appropriately to determine the odds of the child having Down Syndrome.  Since the test came back negative they had the child.  The couple said had the test come back positive they would have aborted the child.  So they sued for the $3 Million to cover the extra costs of caring for their daughter.  ARE YOU FREAKING KIDDING ME?! I completely understand that there is a malpractice situation involved.  I agree with that completely but don't drag your child into it.  Think about it.  That little girl will grow up for the rest of her life knowing that her mommy and daddy didn't really want her because she's different.

I'm so angry and my heart is beating fast just typing this post.  It's ignorant people like this that make me want to do amazing things. Sure Maria and I had to face those thoughts and deal with our emotions when we found out that Lorelei had a 1 in 16 chance of having Downs.  But we did it and have realized that no matter what Lorelei can or can't do she is and will be an amazing person.  She has already at only 1 year old changed people's perceptions of what babies with Down Syndrome or any other disability can accomplish.   People like this couple will be the driving force in my becoming an advocate for Down Syndrome and other disabilities.  I want to show the world that Lorelei is not a burden.  She is not a punishment to Maria and I because God is mad at us.  She is the total opposite.  She is an amazing blessing that strengthens us.  God chose Maria and I to be in this situation for a reason. He did it because we are strong enough and loving enough.  We will make a difference not just in Lorelei and Mikaela's lives but in a larger arena.With her help this family will be stronger and I plan on carrying that strength to others.  So in the end thank you Levy family. Thank you for being so heartless and exemplifying the fears of apparently 90% of the females that get positive Down Syndrome tests back.  You have reinforced my drive to make a much larger difference and do amazing things in these children's lives.


Again, sorry for flying off the radar for a bit.
And ... I love my wife!

A Year Ahead

I can't believe the girls will be a year old on Thursday! The time just really flies by! A year ago we were trying to stop my labor, but the girls were ready to enter our world...and they definitely know how to make one heck of an entrance!

The leaps and bounds we have conquered still amazes me! Mikaela is so close to walking, but being so stubborn! Lorelei is bear crawling, which is amazing and ahead of the game! :) It is hilarious to watch her!

You know, before having kids, it was hard to imagine my life with them. Now, it's hard to imagine my life without them. It a,ages me how much they can teach you and how they make you look at the world in a whole new light!

We will have a fun filled weekend with family and friends, cake and ice cream. :) We have a photo shoot on Sunday that I hope to share some of the pictures with you all! I hope to write on Sunday to share our first birthday party experience! :)

Changing Lives

So, my in-laws were in town this weekend, so Brandon and I took advantage and went out on a double date last night with some very good friends of ours.  We got on the discussion of having children with special needs sometime during the night, because everyone loves to talk about their kids as much as possible. :)

Our friends were telling us that they always used to worry about having a child with special needs, because who doesn't.  We all know, that we are all uncomfortable with children with special needs at first and we always think "I wonder how the parents deal."  The conversation went on to giving Brandon and I so much credit.  They said that after meeting us and spending so much time with us and our family, that they don't worry about that anymore.  They now understand that no matter what, every child is a blessing, and they don't even think twice about it.

I know that we are friends, and they are "supposed" to say things like that, but it made me smile from ear to ear and it made me feel like we are making some kind of difference in the world.  We hope that we can continue to make a difference in other people's lives as we raise our children and show them off to the world. :)

Both girls are doing great.  We had 2 sets of grandparents here yesterday, so it was a full house and the girls got ALL kinds of attention. :) We have gotten Mikaela to take a few steps on her OWN when she is the mood! I am thinking she will be walking in the next month or so.

Lorelei has the army crawl down pat!  She has now taken to getting on her hands and her feet!  Kind of like the Downward Dog position in yoga.  We are not sure what she is trying to do, but I sent a picture of it to our PT and she said that it just shows how much stronger she is getting. :) We have noticed that Lorelei will do things when she is ready, so we know the crawling will come....when she's ready! :)

Over the Snow!

So, the girls and I have decided that we are over waiting for snow and want warmer weather so we can enjoy the outdoors! :)

Everything has been going fantastic! Between work and the girls, I don't feel like I get two seconds to breathe by myself and I am sure that Brandon feels the same way.  Both girls had check ups last week and are both a little over 20 lbs.  Only a month and a half to go and they will be a year old! I can't believe that!

Mikaela is cruising right along.  Right now, we are trying to get her to stand on her own so she can start taking a few steps when she is ready.  She will stand for a few seconds and then plops down, but we are getting there. :) She is just as mischevious as ever!  She even has the grin to match it! :) She is constantly climbing over and into everything, including her sister!

Lorelei has been doing very well.  She is now crawling in her own way.  She has an army type crawl going.  She will get herself in the crawling position ALL the time and rock back and forth, but never goes anywhere with it.  We are working with her on that now! :)  She has had several doctor appointments lately to determine if she has a mild hearing loss.  The conclusion we finally came to today is that she needs tubes.  Her ear canals are so small that even when the tiniest bit of fluid gets in there, she loses some of her hearing.  We are not sure if we will wait a little until she grows some, or just go down to UVA and do it ASAP.  I am worried that if we wait, it will impact her speech and we don't want that. :)

Other than that, everything is the same! Brandon and I are doing the Polar Plunge the first weekend of Feburary.  Him, the actual plunge, and I, the 5k.  All proceeds go to the Virginia Special Olympics, so we hope to make this a yearly thing and contribute to Lorelei's Special Olympics in the future! :)

New Year, New Developments

It’s a new year and more posts on this blog would be nice.  Therefore I am making it my goal to post more often.  As of yet I’m not sure this page has really done everything that I hoped it would.  I wanted this page to provide hope and support for other families if they are having a difficult time.  Ofcourse what else is to be expected when you are blessed with twins than to have your whole world be consumed by babies!  Free time is almost non-existent.  That being said let’s update everyone.

                When we last posted we had just taken Lorelei to the Down’s Clinic at UVA.  Since then the girls have been doing amazing.  Mikaela is still thriving and getting into everything!  She pulls herself to stand and walks along holding on to stable objects all the time.  She crawls over everything including Lorelei.  She has begun to be able to pick up small objects with her index finger and thumb which is awesome.  She has also begun to realize consequences of her actions.  She now has figured out that if she bangs things together they make noise.  This has been a ton of fun for mom and I. 

                We have seen simply the beginning of the girls fighting.  When one girl has something the other one wants it.  This usually results in thievery and someone upset.  It’s an ongoing process and is funny to watch.  Don’t let yourself be fooled into thinking “poor Lorelei” because she takes things from Mikaela just as often as she has them stolen. 

                Lorelei is doing wonderfully.  She was very fussy the past weeks and we never felt a tooth coming in on the top of her mouth.  Out of curiosity I checked the bottom of her mouth and found a tooth beginning to come in on the bottom left side.  It is unfortunate that they’re not coming in the order they should but atleast they’re coming in.  We often hear of children with Down Syndrome taking much longer to get to this point so we are excited.  She has like her sister begun to try and use her index finger and thumb to pick up some small objects.  This is not always done with success.  She is still more comfort using a “raking” technique to pick up something but we are working on the skill with her at every meal time.  Lorelei can stand against the couch or when you hold her hands which is great.  The girls watched a whole episode of “Dora the explorer” the other night while standing against the couch.  I have a sneaking suspicion that mom and I will learn all the songs eventually. 

                Lorelei has also taken to eating food with great enthusiasm.  The old days of fighting with her to keep it in and not push it out with her large tongue are now gone.  She can’t get enough food most days.  A very exciting new development is that she has begun to crawl forward a little.  She usually does this when she wants something that is front of her.  She used to roll to the sides and pivot to get there.  It’s not all coordinated yet, arms and legs.  She uses her ankle flexion and extension more than anything else but is starting to get her knees under her and push forward. 

                Most of these new developments are blessings that come from Lorelei’s determination to move along with her sister.  We work with her every day as does our nanny but it really comes from LC (Lorelei Cristina).  She has done some amazing things so whenever a therapist comes to see her they all say “wow, she looks great” or “she is doing so well”.  These little girls are amazing and push Maria and I to keep those expectations high.  They have leaped over every bar set for them so far and I’m sure they will continue to do so.

Long Lost Update

Wow! Things have been so busy lately!

Yes, football is over, but these girls don't let us stop for a second! When, they do go to bed, Brandon and I are both too exhausted to do anything productive. :p

Lorelei had her first appointment at the Down's Clinic at UVA in November.  They evaluated her and just checked to see where she is right now.  She was 8 months old at the time and Dr. Anderson said she was at the 7 month level.  Her exact words were "She looks great!"  We could not be happier or more excited.  We and Bethany are working so hard to be sure she gets what she needs so she can be right along with her sister!  Lorelei is sitting up now! :) She cannot get into the position on her own, but if you sit her on the floor she will sit and play! :) We are working on the crawling now!  She can get on her knees.  She can pull herself up on her hands, but she hasn't figured out to put both together yet, but I know we will get there soon enough.  She babbles away all day long! It's so funny.  We will babble to her and she will have a conversation with us.  As my mom said, she is probably frustrated and thinking that we have no clue what she is trying to tell us! :)

Mikaela is all over the place!  She gets into EVERYTHING! :) She is crawling everyone.  She is pulling herself up to stand and she has even taken steps along the couch already!  The child is crazy!  She is going to keep me on my toes and butt heads with Brandon all the time!  She has three teeth coming in right now so she has some uncomfortable days.  Other than that, she is Mikaela! :) Nothing else going on with her.

We all had a great First Thanksgiving as a family of four! The girls even had a lunch of sweet potatoes, turkey and mixed vegetables! :) 

 Until next time! :) 

Late Night E.R.

Last night we had our first trip to the emergency room as parents.  It began yesterday with our girls going to the pediatrician for their last serious of shots.  They also received the flu shot.  The doctor was very impressed that Lorelei was meeting all of her milestones so far.  She has been rolling over for months now, both girls have been trying to crawl lately, but Mikaela has found a little more success than her sister.  Both girls also have their front 2 bottom teeth coming in.  So it has been exciting to say the least.

The girls went to bed fine but Lorelei woke up with a temp. of 103 and we immediately took her to the hospital. When we arrived she was at 104.  They gave her tylenol and by the time we saw the doctor 3 HOURS LATER she was back to normal.  It was weird seeing both girls wide awake and trying to play and crawl at 1 am.  We finally got out of there at 2 am and things have been fine.

We know every parent goes through the trips to the ER but ofcourse our case felt different.  This was our girls.  The past few months have been amazing and trying at the same time.  The girls have made leaps and bounds in their abilities to sit, stand, crawl ... and Maria has been there for it all.  If there was ever a down side to being a dedicated coach, it's that you miss so many things with your children.  My wife has done an amazing job.