School's Out for Summer

The kids got out of school last week and it was a crazy week in general.  That's the reason there hasn't been a blog post from me for 10 days.  Emi had her last day of school on Wednesday and Eriks' last day was Friday but because we had to travel to Indy, his last day was Thursday.  It's kind of a bummer for him because he missed his class party but that's about all he was going to do at school Friday had he gone.  

I'm not really sure what's going to happen with either kid as far as school goes next year.  I don't know if where we are moving to is going to have a program to accommodate Emi.  Talking to a family friend this past weekend when we were back in Indy, she didn't think that there was a class like what Emi is in now.  She is currently in a class where it is both oral and ASL combined.  If there isn't anything like that for her there, then she will have to go into an oral class and we will have to demand an interpreter for her.  She will not survive in an oral only class.  She will get angry and frustrated and won't learn anything.  I wish I could force her to talk more but it just isn't happening.  If we try and force her without sign, she shuts down and there is no communication.  I would love for Emi to walk up to me and say, "Mom, I want a glass of water please," but that isn't happening any time soon.  You have no idea how frustrating life can sometimes be with a minimally verbal child who still has a lot of sign language to learn.  I hope we'll find out soon what our options are for her.

As for Eriks, we've got him on the waitlist for one private school.  There are either 4 or 5 kids ahead of him for 2nd grade and they don't think there are going to be anymore openings for the upcoming school year.  There's one other school we need to call this week that we'd like him to go to.  My cousin sends his 2 children there and it's another good private school.  If we can't get him in there, I'll likely end up homeschooling him.  Not really what I want to do since I really should be working and pulling in extra income while Lane is doing his 3 yrs of law school.  We'll see what happens.  

Emi's teacher uploaded photos of her over the past 3 1/2 months that she was in school that I wanted to share.  Unfortunately, I don't think a whole lot of photos were taken of Eriks over the school year so I don't have any of him to post.  

Parent Appreciation

Today at Emi's school they had a Parent Appreciation lunch for us with pizza and ice cream that both Lane and I were able to attend.  Lane wasn't sure he would be able to get away from work but it was a slow day at the office so he did get to join me and Emi. 

I need to say (as most of my close friends and family know) I was extremely apprehensive about sending Emi to Pre-K full-time 5 days a week.  She was extremely attached to us and my fear was that she was going to be totally ticked off at us for leaving her from 8 am to 2 pm with complete strangers.  In the beginning she wasn't too happy about it and my heart broke every time I left her screaming and crying.  She did not want me to leave her.  However about 2 weeks into school she was cool as a cucumber about it.  And now, she is a completely different kid from 3 1/2 months ago.  She's bigger and more independent.  Plus she's signing up a storm and saying words and letters I never thought I'd hear from her sweet lips.  For some of those new to my blog, Emi was born profoundly deaf and can only hear with a hearing aid.  Without it she hears nothing.  She was also born with a cleft lip and cleft palate - both of which have been repaired.  The struggle has been training her mouth and lips to do what we know they can do.  In just 3 1/2 short months of school she can say the letters H, F, S and G which are very difficult for cleft palate/lip kids to get.  We're getting words and sounds that we struggled to get over the course of a years worth of in-home speech therapy.  I don't blame the therapist but I strongly believe that a classroom environment and seeing other kids do it has given her the motivation she needs.  Plus the therapists at the school are awesome.  They've even said on the last day of school when I come pick up Emi on the last day of school they're going to tell me they have no idea where she is.  They all want to keep her there.  And they have been a godsend to her.  I'm not going to miss life here but I am going to miss the DHH (deaf and hard of hearing) staff at Still so very, very much.  I could not recommend a better group of teachers, therapists and para-pros for kids with Emi's needs.

Her teacher, Miss Jenna, made a great slideshow of pictures of the kids throughout the year.  On Monday I'm going in with a thumb drive to upload a bunch of photos of Emi to have and to post here.  It was such a great slideshow.  She's had a ball this semester.

In the photos above it is Emi signing I love you.  It was so sweet.  I love it!

Overwhelmed By the Response to My Last Post

Wow!  Yesterday's post lead to over 250+ hits on my blog.  Some of the credit I have to give to a FB friend, also a fellow CHDer who linked my blog on her FB page.  I'm sure from there it got passed to others and so on. 

I never in a million years thought my ramblings would lead to the response I received.  I am humbled and honored.  It's always been important for me to be an inspiration to my children but I never thought that I could make such an impact on the life of another CHD patient or the parent of a CHD patient.  I never thought I (yes, little 'ol me) could give hope to parents of children with CHD that their own children will live fairly normal lives.  When I was younger I was determined that I was going to be a wife and mother even if it meant adopting my kiddos.  Reading these words has really touched my heart and caused some joyful tears.  Thank you!  Thank you!  Thank you!

Here are some words of wisdom that I received via email or via reading them on fellow CHD friends FB page.  I hope they don't mind that I'm posting their words here.

"DO YOU HAVE ANY IDEA HOW AWESOME IT IS TO SEE YOU DOING SO WELL AND SO HAPPY?  I love it!!  It was so inspiring to read your blog and you are exactly the way I hope my *J* will be."

"My daughter is going to be 2 next month and has HLHS...People like you give me such hope for her future...I have to be honest, you are the 'oldest' person I have ever found with HLHS."

"Stories like that give me hope for my daughter's future."

"Reading this blog I can't tell you...I'm in tears."

"Thank you so much for sharing this...It really means a lot to me to read her blog." 


I also wanted to add an important piece of info that I left out.  Not on purpose but it just didn't cross my mind at the time.  With my HLHS diagnosis, among my other heart problems, I was never a candidate for the Glenn or the Fontan procedure.  I have unrepaired HLHS.  I have 3 shunts, only 2 of them are currently working.  One closed off when I was about 21 or  22 yrs old after having been functioning since I was 8 days old.  That's one of the reasons I am so puzzling to congenital cardiologists because I never had the typical HLHS repairs done.  They can't figure out why someone so anatomically incorrect, without the major heart rerouting/reconstruction is functioning so well.  I can only thank God for that.  He knows what he's doing when it comes to me.

I'm going to be blogging a lot about my kids and hubby still, but I plan on adding more "me" content.  I have lots of good childhood stories to tell other CHD patients and CHD parents.  I'm even thinking about a Q&A blog post.  CHD parents or patients who want to know my life's experiences, limitations, etc.  I'm willing to give you first hand experience.  Granted each CHD patient is different but we have so many similarities.  So if you have a question, send me an email and I'll compile them and put together a post for sometime in the future.

Again, thank you from the bottom of my heart for reading my blog.

Adult Congenital Heart Association Conference (LONG Post)

I haven't talked much about my health.  Not because I haven't wanted to, but because I've never wanted to make a big deal of it.  I just want to be "normal".  The truth is, I'm not "normal".  At least not physically and anatomically.  My heart is not normal.  It will only be normal if and when the time comes to have a heart transplant.

Why am I discussing this now?  Because from April 28th - May 1st, for the first time in my life, I truly felt normal.

I went to Los Angele$ for the 6th annual ACHA conference.  My whole life I knew there were others like me.  Kids who were born with heart defects that would keep them from being "normal".  When I use the term - what "normal" means to people like us - are people who can walk multiple flights of stairs without getting winded, run multiple miles on end, swim laps like they're being chased by sharks.  Does that make sense?

I'm going to try and give you a little lesson on CHD anatomy.  People who have CHD (Congenital Heart Disease) have limitations.  Our hearts and lungs can't keep up because they don't function the way anatomically correct hearts can.  Many of us are missing chambers to our hearts.  A normal heart has 4 chambers, most CHDers have 2 or 3.  My heart has 2.  I have a ventricle and an atria.  Most of you reading this have 2 of each.  Due to the lack of the 4 chambers that a normal heart has, my 2 chambers have to do twice the work.  Our blood doesn't circulate properly and get the full amount of oxygen it needs.  People with normal hearts have O2 saturation rates of 97% - 100%.  CHD patients average 80% - 85%.  Like I said that's average.  There are those with lower and higher rates.  My "normal" saturation rate runs between 83% and 87%, which is really very good.  With that being said, too much higher and it could actually be bad.  I could continue typing for days and still not cover it all but I figured I had to give you some basics to understand.  My actual medical diagnosis is as follows - Mitral Valve Atresia, Multiple VSD (ventricular septal defect), Hypoplastic Left Ventricle (aka Hypoplastic Left Heart Syndrome or HLHS), Transposition of the Great Vessels (TGA), Pulmonary Atresia, Atrial Fibrillation.  Quite a mouthful isn't it?

Now that I've given you a little lesson on CHD, back to the conference in L.A.  As I was saying, being there made me feel normal.  How many conferences can you go to and get compliments on how pretty your chest incision scar is?  It's totally different than being gawked at by people trying to figure out why I have this huge scar that starts at the top of my chest and goes down.  At the conference we all knew why we had those scars - heart surgery.  Simple as that.  And to us it's no big deal.  It's just a part of who we are.

I met some awesome, awesome people.  Some very inspiring people.  I've never felt sorry for myself but I've had way too many occasions where I have felt very frustrated having a CHD.  Seeing some of the accomplishments of others has made me realize that despite my limitations, there is so much more I can do.  One of the CHD doctors at the conference is a CHD patient himself.  It was his own heart condition that gave him the drive to work in medicine.  One of the CHD patients that I met is in med school working on becoming a pediatric cardiology surgeon.  Another patient I met biked 20+ miles to raise money for CHD.  The list goes on and on.  I didn't even realize that CHD patients could do this kind of stuff. 

There's one couple I met in particular that really gave me the drive to want to do more as a CHD patient and in the CHD world.  Jeni is a CHD patient who like me has HLHS.  Nick is her husband and so in love with Jeni.  It was so cute the way he looked at her.  Both have this incredible passion about CHD.  They both volunteer/work at a camp specifically designed for kids with CHD.  Many of the younger, and when I say younger, I mean in their early to mid 20's CHD patients went to these heart camps and in turn have volunteered their time as adults at these camps.  Some of them are still involved with heart camps.  I didn't even know there were camps for CHD patients out there.  I don't even know if they were around when I was a kids because I so would've wanted to go.  As a kid I think it would've made me much more comfortable in my skin.  One of the most mind-blowing things that both of them are doing this summer is they are biking from San Francisco to NYC to raise money for CHD research.  Nick is actually doing the majority of the biking.  Jeni said she was just biking out of the big cities with Nick.  The rest of the time she was going to be in a support vehicle.  They will be biking through northern IN at the beginning of July not long after we move back and I'd really like to be there to cheer them on.  Plus, I want Lane to meet them and I want them to meet our kids which they loved seeing multiple photos of. 

There are things I didn't expect from this conference.  The first is how emotionally draining it was.  Not in a bad way.  I had so many conversations that involved tears.  Tears because we have dealt with so many of the same issues.  Not being able to have biological children because it could kill us.  Short hospital stays that turned into longer hospital stays.  One of the big ones is how much our "normal" friends take all the stuff they can do and their lives for granted.  Don't get me wrong, I complain about things and I know there's some stuff I take for granted.  It's just our human nature.  There are days I complain a lot.  But there are 2 things that really bother us CHD patients.  The first is milestone birthdays - 30, 40, 50...  If I had a dollar for every time I heard someone I know complain about turning any one of the above ages, I'd have a condo in the Caribbean I could escape to.  For us CHDers, hitting milestone birthdays is a BIG, BIG deal.  I was thrilled to turn 30.  In 4 yrs I will be turning 40 and can't wait.  Not many people get excited about turning the big 4-0 but I am.  It means that those doctors who told me I would likely not live to see my teens were wrong.  I'm still here and I'm a wife and a mom and I'm still breathing!  There are other things I want to be that I'm working on.  Photographer is one of them.  It really makes me sad that people don't look forward to getting older.  We CHDers celebrate it.  It means we've been given one more year of seeing the sunrise.  Smelling the flowers.  You get it.  A small FYI, it's fine for you to complain about milestone birthdays to people who don't have major health issues.  It's not OK to complain to us!  The other thing that really bothers us is you'll never be faced with the likelihood of a heart transplant.  I'm jealous that it's not a weight on your shoulders.  I can almost guarantee you that most CHDers when we go to see our cardiologists are worried that we're going to be given the news that our hearts aren't functioning as well as the last time and the prospect of surgery or transplant is on the horizon.  A few of us CHDers at the conference actually joked though that you can put us under the knife, but don't bring a needle anywhere near us. 

I also didn't expect that I'd have so many instant friends.  There is no judgement in the CHD world.  We all have different types of defects, but we all have hearts that are sick.  I didn't have to worry about what someone was going to think of me.  I didn't have to impress anyone.  As I said at the beginning of my post, I felt normal.  I also fell in love with the CHD community.  This group will always have my back and I'll have theirs.  Their support is amazing.  I am so thrilled to be a part of it.  We compared surgeries and medications and how both made/make us feel.  Normal.  To a non-CHDer it would've been boring and over your head in about 30 seconds.  We talked about this stuff for hours!  Conversations didn't want to end.  I don't think any of wanted the conference to end either.

My one regret about the conference is that Lane wasn't there.  I was happy to have some time to myself but it would've been an awesome experience for him to meet other spouses of CHDers and to learn many of the things I learned.  It's one thing to be there physically and hear all this information.  It's another thing to try and regurgitate it to someone who wasn't there.  It's very difficult.  I still haven't been quite able to wrap my head around it all and it's only been 10 days since the end of the conference.

The next conference isn't for another 2 years and I'm already looking forward to it.  That's just how incredible it was for me.  I didn't take a lot of photos but I want to share the few that I did.  I miss my new CHD family so much.  To my CHD friends who will read this post, thank you for being like me and becoming my friend and sharing your lives and stories with me.

 My new friend Jeni.  She is so amazing and I want to be more like her.

 CHD patients and their spouses.

 Downtown LA skyline from my hotel room w/ zoom lens.  After living here for 3 yrs and how typically smoggy it is, I was surprised that I could see it that well.  Some of the locals I met at conference said that LA has been working on the air quality.

 Manhattan Beach Pier

On the Hollywood Strip.  The famous theater was advertising the new PoC movie coming out.

For those of you who want more info on Nick and Jeni's ride from Frisco to NYC, here's the website.  They would love your physical or monetary support. The CHF would love your support.

Bike4theCHF


Here's some CHD facts:
Approximately 40,000 babies are born every year in the US with some form of CHD (that equates to approximately 1 out of 125 born are born with CHD). 
There are approximately 35 different types of CHD.
CHD is THE #1 birth defect among babies born in the US.  More than any other birth defect.
There are approximately 800,000 adults and children in the US living with CHD.
CHD research is drastically underfunded, ie. very little money goes to research to make life better for those living with CHD.

Disney Part 3

Time to wrap up our Disney adventure.  We spent our final full day in WDW at the Magic.Kingdom.  We weren't there the whole day.  We did the park in the morning, went back to the resort for the afternoon and then went back and nearly closed out the park when we left about 11:30 pm.

We started the day with breakfast at Chef Mickey's.  I used to love this place for breakfast but this time I was extremely disappointed.  The kids however, loved it.  What made this trip to Mickey's not so good was not the food, although for what we paid, it should've been better but it was a lot of other little things.  First, we were seated in an area of the restaurant that was freezing cold.  Second, we had a horrible server.  It took forever for me to get the Diet.Coke I requested.  I had to get up to use the restroom and when I came back, the server had cleared my plate.  The plate that was still half-full.  She didn't even bother asking Lane if I was finished.  She just took my food.  I was ticked to say the least because I didn't want to get up and stand in line all over again.  Towards the end of breakfast, Emi decided she had to go potty and Lane took her.  After my plate clearing incident Lane said, "Don't let her take my plate."  Well when she came around, she actually asked if she could take Lane's plate.  I told her he was still working on it.  Two minutes later she came back again and asked.  I told her no.  Seriously!  You just came by and asked.  Lane was still with Emi and I got busy with Eriks.  The next time I looked up, his plate was gone!  I recounted the tale to Lane when he got back with Emi and he was not happy.  Needless to say, I don't see a return trip to this restaurant in the future.  Huge disappointment.  I did get some great shots of the kids with the characters.

With bellies full, we headed to the park.  We rode the train around the park.  Emi fell in love with trains on this trip.  She couldn't get enough of the monorail so getting on the train and riding around the whole park was awesome for her.  I'm sure she could've ridden the train all day.

We briefly caught up with our BIL & SIL who were there with my SIL's mom & SIL's younger sister and her family.  It would've been great spending time with them but they were wrapped up in chaos of their own with a party of 12 going all over the park.  The older kids were on a mission and the parents were at their mercy.

After splitting from Lane's brother and his gang, we took the kids on a bunch of rides.  We wanted to try and do what we could before heading back to the room for the afternoon.  The kids got to meet Rabbit from Alice_in_Wonderland.  I got one of the best pictures.  It was so sweet and Emi couldn't get over signing and saying, "rabbit," about a bazillion times.

About 6 pm, after dinner, we headed back to the park to ride more rides and watch the Electric_Light_Parade.  The near sunset that we saw after heading back into the park was beautiful and I couldn't help but take a photo.

The nice thing about going back to the park in the evening is that although it's still busy, it's not as busy as it was during the day.  The other nice thing is that it starts to cool off and it's not as hot.  The wait for the rides is shorter.  We got to ride a ton more rides than during the day.  We got to ride even more while everyone was watching the first parade and the fireworks.  We did catch the end of the fireworks as we were going to start scouting a place to watch the parade.

Here are a few photos from the parade.

Emi actually crashed before the parade so she missed the whole thing.  Eriks really enjoyed it but he was so tired afterward.  When we got them back to the room, they both crashed hard.

The next morning we had some time before check out and decided to enjoy the pool for a few hours.  The afternoon before we packed up most of our stuff so we would have the morning to let the kids have a little bit more pool time.  We definitely have water babies and the kids will likely spend every sunny and warm day this summer in my parents pool.  We could not get them out of the water.  We finally did get them out and went back to the room to change and check out.

Well, that's it in a nutshell.  Trip was fabulous but we are going to lay off Di$ney for awhile.  At least trips with the kids.  It's fun but very draining and I'm ready to spend more vacations at the beach chillaxing!

Disney Part 2

I, in no way intended to go this long between posts.  I had planned on posting early last week and then the dreaded stomach bug hit me and I was done for the next 48 hours.  All of us got the bug, but Eriks started it and of course, I got it the worst!  I was so very, very sick.  My mom flew in on Tuesday to help while I was away and her first day here she ended up taking care of the kids because I was still sick from the night before and Lane got sick that afternoon after picking her up from the airport.  My mom was a lifesaver that day!  After 48 hours of feeling like death and fear it would never go away, I was packing for a trip out West and then hopping on a plane Thursday morning.  Jet leg kicked my butt after getting back earlier this week.  I think I'm finally to the point where I feel almost normal again.  Almost.

So continuing on with our fun Spring Break trip...

Tuesday morning it rained all morning.  It was also quite cool that day.  We watched TV in the room during the morning.  There really wasn't anywhere we wanted to trek to in the rain.  We knew the rain was going to be there all morning so we decided that was going to be our 1 day not hitting the parks.  Once the rain let up late morning, we headed to Downtown.Disney for lunch and some shopping.  No pictures taken at DTD that day.

Wednesday we went to Epcot.  The weather was sunny and the temps got very warm that day.  The kids had a great day.  We started out in The Land.  Checked out the Nemo ride and watched the dolphins swim.  Emi liked that.  She thought it was funny watching them.  Rode Living with the Land and then had lunch.  We ended up getting fastpasses earlier that day for Soarin' because that ride is always packed.  Emi's too little still to ride it so Eriks got to ride it twice.  He first went with me and then once we got done, he went with Lane while I hung out with Emi.  When Eriks and I rode it, we ran into a family from our school.  The kids recognized Eriks and started talking to him.

Once we were done with the Land, we wandered over to Future World.  Wandered around looking at the flowers since the Flower and Garden Festival was going on.  The kids got their faces painted and then wandered back into World Showcase.  Rode some of the rides back there and then it was time for our dinner reservation.  After dinner we decided we were done and ready to go back.  We had been on the go since before 9 and it was already after 6:30.  We sat on the balcony for awhile and then got the kids ready for bed.

I'll wrap up our trip in the next post.  We only have 1 more day of our vacation and we wrapped it up in the Magic.Kingdom (aka. the Happiest Place on Earth).

Enjoy the photos!

I need to backtrack a little bit.  I forgot that in my Disney Part 1 post we ended up at Epcot after spending the day in DHS.  I think the reason I forgot is because I hadn't yet uploaded the photos from my other camera.  Our dinner reservation was at Chefs.de.France in World Showcase.  One of the highlights of dinner is we got to see Remy from R@tatouille.  The kids loved it!  So here are the photos I didn't post from that part of our day.  Sorry!

 Eriks imitating one of his favorite villains! 

 Remy is animated!  He moved and looked at the kids and interacted with them.  He squeaked when he was talking.  It was really cute.  I wanted to take him home!

Emi and her ice cream!  Actually this was raspberry sorbet but this is her addiction.  She'll take ice cream over any other dessert you offer her.