Philly Trip Vol. 1

This adventure was Alexi's first road trip, and she did great. On the way out there we stopped at Gravity Hill. That's right, 1 day before she turned 6 months old, Alexi defied gravity and rolled uphill from the safety of her car seat! It was mind boggling! After that insanity, we got back on the road.

Alexi really did do a great job in the car, mommy sat in the 3rd row so she could see her the whole trip and play with her when she needed. (We had Uncle Ken and his girlfriend Crista with us so it was a full car for sure.) Alexi fussed a grand total of 0 times. She really is so easy on us.

Finally we arrived...in Atlantic City. Our first stop (aside from the amazing Gravity Hill) was our pool and spa convention there. Many of you may not know it yet, but Alexi already has a job. She works for The Pool and Spa Place in Bethel Park, PA. That's our family business, and the Atlantic City Pool and Spa Show is one of the conventions we attend to see what's new, and discuss some things with the companies that make and distribute our products.

Alexi spent the show in her Ultrasoft Carrier by Chicco. This was her first all day event in the carrier and she loved it! Not only could she look up and see mommy's face whenever she wanted, but she was getting in some head control work too. We did make sure to take her out from time to time, to really get to enjoy the show. She had fun playin' in all the exhibits (especially the Bobcat one.)

Throughout the day Alexi met a bunch of people. Every single one of them had great things to say to her, and not one mentioned Down Syndrome. In wanting to spread our message, I almost wanted to just tell people that she has DS, so they can see, that this lovable adorable baby they were playing with has DS, and that's ok. But, we decided to just let it go, and not push, our time will come when people will be able to notice it on their own, and that's when we will discuss it with anyone and everyone who wants to know more. She got so much love at the show and was talking up a storm! From walking around staring at mommy, to meeting all these new people, she just couldn't help but sing and talk all day long.

After "working" so hard for 2 days at the show, we did a little sight seeing in Atlantic City. We ate lunch at Evo, a nice little place near The Pier Shops, then took a stroll onto the beach, Alexi's first time on the beach was in Jersey, in January!

Once we finished our little beach visit, we went to the Pier shops and walked around (mainly because Uncle Ken forgot his belt and had to buy one.) Alexi's favorite store was the candy store where not only was there lots and lots of bright fun colors, but they had music playing loud, and she loves music.




This was only the beginning of our trip, so there's more to come!








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Fun Packed Weekend

We haven't posted anything in a few days, but that's because we've been pretty busy. Alexi started off her weekend with some outdoor fun. Friday afternoon was the first time Alexi had friends over to play in the snow! Don't worry, they were all bundled up tight. Alexi stayed cuddled up in her carrier on mommy, while Gavin (2) and Zachary (1) played in the 'iceys' and rode on the sled, being pulled by mom and dad. Alexi wasn't bothered by the cold at all, and loved looking around at the snow covered yard.

Alexi's good friend Hayden turned 2 on Saturday. This was the second birthday party in 2 weeks for Alexi, and she loved it! (Her friend Gavin's 2nd birthday party was last weekend.) She is one lucky girl to have so many friends. Hayden got lots of fun presents and even had some Bethel Bakery cake!! Alexi doesn't know what she's missing with Bethel Bakery yet, but mom and dad (and everyone else we know) sure enjoy it. Alexi got to hang out with some of her other friends while there and loved seeing and playing with them all.

(Left:Heather and Alexi, Center:Laura K and Hayden, Right:Laura D and Alexi)

She ended the weekend with a trip to Mimi and Papap's house. It seemed like forever since Alexi got to see them so it was nice to end the weekend there relaxing and eating some yummy food. We had Crista's famous lasagna and Alexi got to try some of the sauce. She loved it of course.

Alexi getting some tummy time in with Mimi

Alexi wants to thank everyone she got to play with this weekend! She'll be making her first road trip across the state this weekend to visit her family out there. She's gonna have so much fun visiting with everybody and getting to meet some family members she hasn't met yet! She is going to miss Zachary's 1st birthday party this weekend, and hopes he has a great one and gets lots and lots of fun presents!








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Pop-Quiz for Alexi!

Okay, so it wasn't a pop-quiz, we knew it was coming, but Alexi had her first re-evaluation by her Early Intervention Coordinator to see how she is progressing. The verdict is....drumroll...she is doing fantastic! Did we expect any less from our little girl? Of course not, but it was so nice to see how excited our Coordinator and Developmentalist were over Alexi's progress.

Alexi hadn't seen her Developmentalist for 4 weeks between the holidays, and dad having to do snow removal on appointment days. They sure did miss each other. It was a fun 'reunion' though as Alexi showed off all of her new tricks. From talking, to her head control, to reaching out grabbing toys, she "has really come such a long way" in these last 4 weeks.

Our Coordinator hasn't been here since our very first EI meeting. She thinks Alexi is pretty awesome, too. We love how excited everyone got over Alexi's success. They both seemed kinda pleased about our efforts, as parents, too. In fact, they both took the time to compliment us, and took a couple minutes to let us know they can tell how much we are doing between sessions. I'm not gonna lie, it was great to hear that, too. To know that our hard work is being noticed, because that means it's making a big difference for Alexi.




We get our thanks every day though. Alexi thanks us by working so very hard at accomplishing her goals.

One of the greatest things to come from our meeting, is an increase in therapy sessions. Alexi is now going to see a Physical Therapist (along with her current therapists) to keep her progressing as much as possible. This means one more new friend for Alexi! The OT and PT will be working on the same things as each other for a little while, as Alexi is a bit young for when the two really become different. But getting started on PT now not only gives us an extra meeting between current sessions, but also gives us an extra perspective, and possibly some new approaches to add to her exercises.

Sorry if this blog sounds like I'm bragging, but it probably sounds like that because I am. My daughter rocks! I'd gladly shout it from the rooftop, but I live "in the sticks," so typing it here is gonna reach way more people than my 1 neighbor (and they've already met her, so they know she rocks.)








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What's that you say?

"There is a reason God gave Alexi to you......5 months in and you guys are already showing why!" - Cassandra Williams

Cassandra probably didn't think twice about how to word this, but it came out in a way that shows 2 key things. Alexi is a person, an individual, not lumped together with anyone else. This is important to us, that people see our child, and all children, as individuals. Not just lumping kids together by race, religion, or disability.

The second part of this statement says that Kerith (my wife) and I are doing a good job ourselves(from what Cassandra can see.) It is so very often that we hear this statement made slightly different, but with whole different meaning. "God gives these special children to special people."

We disagree. We genuinely appreciate the compliment, and rarely correct anyone who says it to us, as it's "no big deal." But there are parents out there that don't take advantage of all the wonderful help that is available to us, as parents of children with disabilities. This help can make a world of difference in a child's life and the adult life that follows.

Another very common response to finding out Alexi has DS is, "Oh that's ok, they are always so happy." This one couldn't be more wrong, and I knew that long before Alexi. We know it's ok, but kids with DS can have these moods: happy, excited, pleased, stubborn, angry, frustrated, sad, lonely, embarrassed, and many many others. Sound familiar? Kids with DS have all of the typical emotions that children have.

Another misconception is that "They don't even know they're different." This can be true for many kids that are intellectually disabled, but not true for kids with DS. These kids know it, and at times, it bothers them. It effects each child differently (go figure) but every person with DS I have come across knows they are different, and most work very hard to try and overcome that.

We really are put in an awkward situation. "Do we correct them so they can see things in a different light?" Or "Do we let it go so as to not offend them, or make them think we don't appreciate the compliment?" I assure you, we appreciate that people's hearts are in the right place. Like I said, we generally 'let it go.' Maybe we shouldn't, who knows?

So thanks Casandra for saying the 'right' thing, we're giving it our best and appreciate the support!

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Oral Exercises

Here's a video of the oral exercises we do before each feeding. We've been doing these since Alexi was 3 months old (1 month gestational) and had some truly amazing results! We highly recommend that anyone asks their OT about these simple tools!

Thanks for watching!









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Occupational Therapy Take One!

Here's our first video of Alexi workin' with her Occupational Therapist. Alexi had already been 'training' hard for a good bit before I remembered to get the camera out, so she was gettin' a bit tired out, but we'll be sure to keep the highlights comin! Hope you enjoy.

We are very fortunate that Pathways of Southwestern Pennsylvania sends our therapists right into our very own home for Alexi's sessions. We are also quite lucky to have started out being assigned a great coordinator, and 2 very knowledgeable and caring therapists. Thank you Pathways!







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Why Blog About Alexi?

We try to keep things lighthearted around here. Life's just more fun that way. But, as you may have noticed, we feel it is pretty important to get our message out that Down Syndrome is ok. Why is this so important to us?

"Nothing in life is to be feared. It is only to be understood." ~Marie Curie

Sure, we want to make certain people are comfortable with Alexi, knowing that she is more typical than, well, her own father. But, we also think it is important for people to know how awesome life is with these kids, so that we can hopefully save a few lives.

How can we save lives by spreading awareness about Down Syndrome?

Well, there have been amazing breakthroughs in science and medicine that allow mothers to have a simple blood test to determine whether or not the child they are carrying has Down Syndrome. This is much safer than past testing which could have resulted in a miscarriage, just for having the test, no matter if your baby had DS or not. This is also much more reliable testing. The previous testing left a 40% chance of a false positive, meaning 4 out of every 10 babies "diagnosed" with DS, didn't really have it at all. The risk factor and inaccuracy made a lot of people decline the test (as my wife and I did) because there was not much to be gained, but you could lose your baby (which was not acceptable to us.)

"It sounds to me like babies are safer now."

They are much safer from the test itself, but not from their own parents. It has been a proven trend that the birthrate of children diagnosed with DS has dropped dramatically. This has been the case in every single country that the testing has been made available to. In fact, 9 out of every 10 babies diagnosed with Down Syndrome through prenatal testing are terminated. A 10 percent survival rate? We don't think that would be the case if people really knew what life could be like.

It was announced in October of 2011 that testing is approved for 20 major metropolitan areas in the US with more widespread availability in the coming months.

We are in no way against the testing, or pushing a political agenda. We know the choice is in the hands of the parents, well mother really. We also think the testing is a fantastic breakthrough and a great tool to aid in preparation. We are simply here to encourage people to educate themselves before making any decisions.

"But life would be so different than we always hoped for." Yup. It will be different alright. But not worse. We would change absolutely nothing. Alexi has given us a completely different set of experiences that we wouldn't have had any other way. Our lives were changed, but they were definitely changed for the better. We've met some amazing people, and become better people ourselves.

I'm not saying there aren't tough times, in fact, finding out was our toughest. But that was because we were uneducated. Knowing what we know now, things would have been much easier for us, this is what we want people to know. Down Syndrome is OK. We're not saying it's better than having a typical child, but we're definitely saying it is not any worse.

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Before She Was Born

So there's alot of things to be afraid of when your expecting a new baby. My wife and I definitely had quite a few things we were worried about. I think it is normal to think "Are we really ready for this?" or "Are we 'adult' enough ourselves to be parents?" Fears like this are probably pretty typical.

We had one particular fear in this house, that we weren't even capable of bringing ourselves to discuss with anyone else. We thought about asking the doctor, but decided against it as it was a little too embarrassing to bring up, even to the doctor. I mean, could you imagine..."What if our daughter came out...."

"A Browns fan???"

Go STEELERS!!!

The Steelers are done for the season but Alexi has had a blast cheering them on and is looking forward to next year.

As you can see, they are always "#1" in Alexi's heart!

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Alexi's Night Out

Having a child is by far the most exciting thing that has happened in our lives. But mommy and daddy still need to enjoy a night out with friends. We got invited to go bowling and had no sitter options so we immediately declined. One of our friends said, "You know, it IS non-smoking there..."

We hadn't even considered taking her with us, but this provoked the question, "Is it OK to take a 5 month old to a bowling alley?" We weren't sure if it was "socially acceptable," but social acceptability has never been quite right for us.

"Is this safe for Alexi?" Well the only drawbacks we could think of were the loud noise and making sure we gave her the attention she deserved. We knew we could balance bowling, conversations with friends, and playing with Alexi. Heck, we knew our friends would be playing with her too. The thing that may make a bowling alley a bad decision for some parents is the noise. They are pretty loud, but Alexi never seems to mind loud noises. I blame it on her first 59 days of life being spent in the NICU.

So we decided to go. She was definitely the only baby her age there, but I am so glad we went! Alexi had a blast watching all the different color lights, seeing people, and even seemed to like the sound of the ball going down the lane and hitting the pins (which didn't happen every throw from our group by any means.) Alexi had a bunch of fun, then fell asleep right there in her car seat, not a bother in the world.

She had a blast, but mom and dad had the best time bowling we've ever had! It was awesome to be out, doing something fun, being with friends, and having our little girl there with us. We still don't know if this is typical for parents to do, but we recommend it to anyone who's child doesn't mind loud noises. Alexi loved it and we sure had a good time goofin' off as parents.

Alexi's NICU Video

This entry is just a little video we made of the clips we had from Alexi's NICU stay at West Penn Hospital. We would really like to thank the entire staff there for the amazing care they provided Alexi, as you can see in our NICU blog entry. Enjoy.

Thanks for watching!!!

What is Down Syndrome?

I know most people out there have at least an idea what Down Syndrome is, but do they really have a good understanding?

Down Syndrome is often associated with the unique facial features and intellectual disability.  These are both part of the condition, though that is not all DS means.

First, let's get the technical stuff out of the way. There are 3 types of Down Syndrome; Trisomy 21, Mosaic Down Syndrome, and Translocation Down Syndrome. Trisomy 21 is what Alexi has, and is what causes DS in 95% of effected people. Trisomy 21 is a genetic condition causing each cell to have an extra copy of chromosome 21, creating 3 instead of the typical 2. Thus the name Trisomy 21. This is also where we get our name, Designer Genes, as Alexi's genetic makeup is designed a bit different.

Right from birth we knew our daughter looked like others with DS.  What we soon discovered was, she actually looked more like the two of us than just fitting a mold of DS features.  She has her mothers nose, my mouth, her mothers hands, and unfortunately for her, she may have my head.  She does have two almond shaped eyes that make DS a little easier to spot, but those beautiful eyes are blue.  Go figure, with a blonde hair blued eyed dad, and a blonde hair blue eyed mom, she came out blonde and blue.

Down Syndrome has some other physical characteristics that may be less known.  One of these characteristics is low muscle tone.  This is part of what makes development a little slower for these kids.  Lacking the muscle tone makes every movement and every bit of coordination a little bit harder to master.  Our Alexi was premature, which also causes low tone in babies.  We can't say for sure how much of her tonal issues come from prematurity, and how much comes from DS, but it makes no difference really.  Alexi has definitely had a tough time with coordination and strengthening, especially in her core.  She knows life no other way, so it's all just typical for her, and she hasn't had a complaint yet.

Another physical characteristic that is less known would have to be the oral cavity.  Alexi, and those like her, were born with a smaller oral cavity.  Her whole mouth inside is a little bit undersized.  This makes speech development and even just keeping the tongue inside the mouth difficult.  Have you ever noticed that people with DS have a hard time talking?  Ever notice that their tongue may be sticking out of their mouth a lot?  Now you know why.  With early intervention programs this is one thing we are seeing first hand, can be overcome with therapy.  Alexi's Occupational Therapist gave us some simple oral exercises to do before each feeding, that are dramatically changing the shape of her pallet.  At 5 months, Alexi is able to keep her tongue in her mouth and is even showing beginning signs of healthy speech development.

Some of the toughest physical characteristics that are common with DS are ones that we have not had to deal with.  There are many health concerns including heart and intestinal problems that can be detected soon after birth.  Alexi passed all of her tests with flying colors.  There are increased risk of thyroid problems, Alzheimers, and other conditions which it is far to early to detect in Alexi, but we are ready for whatever may come our way.

Lastly I bring up the intellectual disability.  DS is probably most associated with this aspect of the condition.  Although it is a key characteristic, I believe that people may not understand that it is not as severe as they assume.  The clinical description of the intellectual disability considers it mild to moderate.  People with DS may come across difficult to understand in such a way that makes them seem to have a slower intellect than they really do.  Remember the oral cavity?  Having a reduced pallet makes speech much more difficult, as their tongue seems giant in their mouth.  This makes the speech sound less intelligent (and possibly a bit lazier) than what is really being said.  Ever watch a kid with down syndrome play?  They seem a bit less intelligent because their coordination may be off.  But remember, they have had a physical disability since birth that causes their coordination development to be much more challenging.  This is a result of the tonal issues they deal with.  These issues can also be helped with physical therapy, which Alexi will begin as soon as she's old enough.

I'm definitely not saying that people with DS aren't a bit slower to learn.  They typically are.  In fact, without early intervention, children in the first years of life can take twice as long as typical children to reach their milestones.  Down Syndrome causes mild to moderate intellectual disability.  That, combined with a few physical disabilities that make things more challenging for them, just seem to make things appear more severe.  At least they did to me.  Hey, maybe you already knew all of this?  Maybe I was the only one mislead by labored speech and a bit less coordination?  Just in case I wasn't the only one "slower to learn" this stuff, I figured I'd share what Alexi has taught me along the way.  I have so much more to learn, but couldn't have a better teacher.

How are we gonna tell everyone???

Once we accepted and appreciated our situation, we weren't sure how to tell people.  This has to be one of the hardest parts for families in our situation.  We wanted people to know not to feel sorry for us, but be happy for us, just as they would for any typical baby.  We did not, however, want to relive the experience hundreds of times.  We decided that a letter to everyone was the best way to spread the news.  Below is an exact copy of the letter we sent to family and friends that we knew would be a part of our daughters life:

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• Ever since Alexi had decided to join us early, we've had a pretty wild ride. Some big scares at first, followed by some truely outstanding progress. One thing that we've known since birth, we decided to hold off on telling everyone until we got the test results back. This one obstacle, isn't one she can just push through and be done with like the rest she has dealt with so well. Alexi has an extra copy of chromosome 21 giving her 47 total, instead of the 46 we all have. This means that she has down syndrome, Trisomy Down Syndrome is what the initial test shows. We would love to address everyone personally with the news but decided that it is just too difficult to make that many phone calls.
  
  The work load of making the calls is all we are trying to avoid, we are in no way upset to talk about it with people. We would love to hear from you and be even happier to answer any questions you may have. We are not experts on this at all and have so much to learn but can answer anything we know the answers to.
  
  Now for the mixed emotions. I know this feels like bad news to most of you, hell it definitely felt that way to us at first. Honestly noone ever thinks it would happen to them...we felt cheated, and mourned the loss of the idea of our perfectly normal little girl. Then we met her.
  
  Alexi had her swollen face (from all her excess fluid she's been losing quite well) and it showed all of the features you associate with downs. It was hard at first seeing it in her, but we soon became just overwhelmed with the joy of knowing we hadn't lost her. Our mourning we felt was over the idea of a typical newborn. Just that, an idea.
  
  Mourning is a much easier process when you get to see your perfectly unique little angel right there in front of you, breathing, heart beating, and squirming around. It's easier because we hadn't lost anything real, just that idea. We now have a whole new adventure that we never even considered. One filled with extra joy and some special moments that will be unique to people in our situation.
  
  If you haven't seen how she's doing, check my status's and messages from earlier, she's doing GREAT. I would tell you again but that's just bragging.
  
  Please dont hesitate to call or message us, as we are anxious to get to talk to everyone and move forward in this new adventure. If you want our conversation private, start a new message to one of us, but this is not a secret. There are alot of people we didnt get to reach with this letter so if anyone asks about her, and you are not comfortable telling them, have them give us a call.
  
  Again we would have loved to call all of you but writing a letter was much easier on us, and PLEASE don't hesitate to call."

This approach worked very well for us and encourage anyone going through a similar situation to use/change our letter as they see fit, if they want.

The begining, the very begining...

My wife and I had been trying to get pregnant for several months.  We were really hoping for a summer birthday as I build swimming pools for a living and wanted our child to have pool parties.  (The things that seemed important then...)  We were unsuccessful for several months and decided to take a couples months off from trying, and just enjoy being able to have a drink through the holidays.  Sure enough, as we got through the 1st of the year, my wife started feeling a little light headed at work and decided to take a test.

We did it!!  The next 7 months were pretty typical, aside from the fact that my wife experienced an unusually pleasant pregnancy.  Instead of gaining weight, we both decided we needed to be better role models and "got healthy."  We ate better and exercised more (under close watch by the doctor.)  My wife never really got morning sickness, and I felt a little ripped off that I never had to run out at midnight to get her ice cream and pickles.

We found out at 20 weeks that we were having a girl.  I thought I wanted a boy, but couldn't have been more excited to get the nursery done now that I saw my little girl.  Then one July day, my wife's back started to hurt.  She thought nothing of it for a while, but eventually called me and told me we had to go to the doctors.  I jumped in my truck and sped off to our house to pick her up.  It turns out her back pain, was labor pain.

What?!?  We still have 10 weeks.  We haven't done any of the final preparations.  What are we going to do?  Well we got to our hospital and the doctors gave her meds to stop the labor.  She was transferred to a hospital better suited to handle a premature baby and underwent more testing.  It was found that our little girl had a pleural effusion, which meant she had fluid surrounding her lungs.  This meant we had to take my wife off the meds and let her go into labor.  We were so nervous.

The meds were stopped over night and my wife began labor once again.  At 7:02 am about 4-5 nurses and doctors came into our room to check on my wife, but didn't say much.  They were soon followed by a half a dozen or so more people.  They were all very concerned and talking to each other, but didn't have time to talk to us.  The only thing I remember hearing was "she's dropping."

My wife was rushed out of the room and into the OR.  Our daughter needed an emergency C section.  They took my wife out of the room at 7:07 and the next 7 minutes of my life were the longest imaginable.  At some point a nurse came back in to tell me my wife was having the C section and they would update me as soon as they could.  At 7:14 my daughter was born.

Alexi gave out a cry and was rushed to the NICU (neonatal intensive care unti.)  Luckily for me, our room was on the way to the NICU and the nurses were kind enough to stop outside my door.  I'll never forget the feelings I had when one came in and said "would you like to see your daughter?"

There she was, more beautiful than I could describe.  I snapped the above picture at this exact moment.  Alexi.  Her name is Alexi.  While the NICU staff tended to Alexi, I was at my wife's side waiting for her to "come to."

As my wife regained her consciousness, one of the NICU doctors came in to talk to us.  She said Alexi was doing fine, and they believed the pleural effusion was going to be completely fixable.  "And I just want you to know there is a good chance she may have Down Syndrome."  And she continued to speak, but i didn't hear another word she said.

I was dumbfounded. I saw her, she was perfect.  This couldn't be.

In a letter to family and friends, I better explain the emotional roller coaster that followed, but the moment I laid eyes on her, I knew.  Down Syndrome wasn't an imperfection.  It was a part of her, a disability yes, just like being short is kind of a disability.  She was my perfectly unique little girl and life together was still gonna be awesome.