Friday, July 27, 2012

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! 

Thursday, May 3, 2012

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?

Sunday, April 22, 2012

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 20th.  Then do the week of speakers and videos and finish the week on Friday the 26th 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.

Tuesday, April 10, 2012

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, 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!

Saturday, March 10, 2012

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!

Tuesday, February 28, 2012

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! :)

Sunday, January 29, 2012

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! :)

Monday, January 23, 2012

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! :)

Tuesday, January 3, 2012

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.