Christmas

Another Christmas has passed us and as always, we had a great holiday. The kids really embraced Santa and was excited about him bringing them presents and filling their stockings. On Christmas Eve, Zach was convinced that Santa was not coming. He explained to us, numerous times, that one of the elves had a cough and Santa had to stay at the North Pole to take care of him. Because of this he did not want to make cookies for Santa or put out carrots for the reindeer. Later that night, Zach came down with croup and we sat in a steamy bathroom helping him breathe. In the middle of the night on Christmas night, it was Hannah. So.. needless to say.. that was not a fun part of the holiday yet seems fitting after the year we have had. Christmas day itself was nice so we are left with some great memories.

Here are some pictures from our holiday season...

The kids on the carousel at our towns "Winter Wonderland" celebration


Meeting Mr. and Mrs. Claus. While in line, Zach insisted that he would not be speaking to Santa or taking a picture. When it came to be our turn.. this is what happened...






Hannah had her first chance to ride on a horse and she LOVED it


Hannah and I making cookies for Santa (yes, I used break and bakes... don't judge.. it was a busy day!)


Hannah putting out carrots for the reindeer




Hannah putting the cookies out for Santa. This picture makes me laugh... as she was walking the plate over to the table.. one of the cookies fell... I told her she could eat it. Then she wanted to eat them all. I told her she couldn't and this was the face I got


Digging into their stockings on Christmas morning


After opening presents, having breakfast and playing with toys for awhile, we drove over the hill to Nana's house (my mom) for more presents and Christmas dinner.

Zach helping Nana make gravy


Zachary having an after dinner nap with Uncle Brian (and yes.. they were both really asleep. In fact, there was snoring)

Just when you think things can't get worse....

I haven't posted much lately. I haven't had anything funny, witty or inspiring to say. (I know, I know... you all are thinking that I NEVER have anything funny, witty or inspiring to say). Chris gave me the green light to let people know what is going on.. so here goes...

The last time I posted about Chris was when he had the loop recorder inserted. Last week he went and had the data "intercepted" as they call it. His cardiologist called on Friday to let us know the details. In the 3 week period since he had it placed, his heart stopped at least 85 times. For 4-5 seconds each time. Completely flat lined.

Eighty. Five. Times.

Now, count 5 seconds. One one thousand. Two one thousand. Three one thousand. Four one thousand. Five one thousand. Now imagine that whole time your heart didn't beat.

Doesn't seem possible, right? But ya, that is what is heart is doing. An average of 4 times a day. And generally it is not when he is sleeping.

His cardiologist also informed us that he needs a pacemaker and he needs it sooner than later. If he does not agree to have it done before Christmas time, he will report Chris to the DMV and have his drivers license pulled. He referred us to another cardiologist in his practice to discuss the procedure since he does not place pacemakers himself. After a long weekend of emotions and discussions we decided to wait and see what the doctor we are referred to says. We met with this doctor on Wednesday. He studied all the data and shows us the scans where you can see his heart stop. I asked him if he agrees with the time frame that Chris' cardiologist gave us which was before Christmas. He said that is being very generous and that it really should happen this week. Being that Chris is still on blood thinners it cant happen just yet. He has to be off those meds for a few days. We are waiting to hear from scheduling to set the date but it could happen as early as next Tuesday.

This is all very hard on Chris because he feels perfectly fine. Doesn't get light headed like they say he should be. The doctor that we met with this week said that isn't abnormal. A lot of people don't feel anything. Until it is too late.

I am really ready to be able to sleep well at night and not wake up in the morning and hold my breath until I hear that he is still breathing. 

I will keep updating as we have information but for now, please say a prayer that he continues to feel good until the surgery can happen and that the surgery is uncomplicated.

Down syndrome... a dads story

During 31 for 21 I asked Chris if he wanted to write something about Zach. He sent it to me but I misunderstood and thought it was not a final draft. Silly me. Sorry it took so long Chris! 

I remember when Zach was born.  It was one of the happiest days of my life.  All I could think about was the soccer playing Hiatt boy running up and down the field and owning the players because of stuff that I had taught him.

I was the one that got to take him to his first bath and hang out with him in the nursery.  It was a very special time for me as a new dad.  I could barely contain how happy I was and think about all the things he and I would do.  I just could not wait to watch him grow and become the boy that I longed for.

We were so ready to go home and start our life with our new born when the news was told to us about the possibility of Down syndrome. The way the doctor told us made me want to reach out and shake her for more information other than that the social worker would come in and talk to us.  The social worker was actually a blessing in disguise.  I do not remember her name but we got more information from her and what was going to be happening to us as a family then the doctor provided in the whole 30 minutes we saw her in the 3 days she came to check on Zach.  We were told we were moving to the NICU and that he would remain there until his jaundice was good enough for him to go home with us.  We were also told that it unfortunately be 2 weeks before we had conclusive proof if he truly had Down syndrome.

We cried…A LOT!  We were not prepared for this.  We asked all kinds of questions of doctors and nurses who came into the room.  We did not believe what they were saying and they must be wrong because so many doctors did not see the markings and the traits that are associated with Down syndrome.

Zach was moved to the NICU and we went home quick to grab a change of clothes and rushed back to the hospital.  We met the head of the NICU who was very cold and very straight forward with us.  She told us that Zach would never play any contact sports and that he was not really going to do much.  The one good thing that she did for us in the beginning was pulled some strings so that the conclusive test would be done before the end of the weekend and we not go home without knowing for sure.

We spent just about every waking moment with Zach and even woke up at 2 am to feed him and for Jen to pump.  The nurses were awesome and super understand and friendly.  I think that they understood that this was a child whom these parents loved more than can be imagined.  The nurses knew that physically there was nothing we could other than to be there for their child and love him unconditionally.

I think that it was Saturday when the head of the NICU called us over and gave us the news that she had received the test results back from Stanford.  The tests came back positive for Trisony 21 and that she was sorry.  She was still very cold and reserved.  I was not a big fan and I remember thinking and even telling Jen how much I was not a big fan of hers.  We cried I think at the realization that what we kind of dismissed as a false reading was coming true.

Zach’s bilirubin finally got to level’s that the nurses and doctors in the NICU felt were ok for him to be released.  It was at that point that attitudes and feeling changed. The nurses who were always sweet became happier for us being able to take home our son.  The head of the NICU became a totally different person.  I think that she was so used to having to deliver bad news she was always in her cold doctor form and now we got to take home our son she was very excited for us and talked to us like new parents.  We were very excited!

While he was in the hospital I decided I was going to give up all my physical activities that I did for fun.  No more soccer because from what I was told Zach would never play sports of any kind.  It was not until after we left the hospital that I found out that Down syndrome was not a burden or hindrance but more of a different life experience.  Zach was healthy and there were several well documented cases of kids with Down syndrome playing sports and even excelling at them. 

Today Zach is on a special needs soccer team.  He has played now for almost 3 years on this team. He is still small and probably one of the youngest on the team at 6 but he is out there chasing after the ball with his mom and dad and sister on the sidelines cheering him on.  I am still playing as well and it does bring a sense of joy to see him out there running around and having such a good time.  I think that in a few years when both he and his sister are playing in different leagues that he will be a force on the field and a scoring machine.

I look back at all of the fear and worry that I had when I was told he would be just a kid who did nothing and it makes me smile because I never met that kid and the only child that I see is one that is going 100 mph from start to finish whether it is soccer or school or even life.

Zach's teacher...

In October I mentioned to Zach's teacher that I was doing the 31 for 21 and if she so felt inclined, to write a little blurb about Zach. She emailed it to me today and it filled my heart with joy to read it.

Teachers, especially special ed teachers, are truly unsung heroes. Zach's aides and teachers mean so much to our family and I am so thankful for them.

Zach Hiatt embodies exuberance as well as heart.  Zach is in my class at school, and I am lucky enough to be Zach’s teacher. Zach’s smile just lights up our room.  Every morning, he’s got the greatest hello for everyone.  When he shares something during group time, his story is punctuated with gestures and demonstrations like when he says, “I’m Buzz Light Year, to infinity and beyond!” with a swish of his cape and a leap.

Not only is Zach exuberant, he’s got a great heart. One day, I was having some medical issues so I took the morning off of school to see a specialist.  When I returned, the sub teacher was finishing reading a book to the students.  I quietly sat down on the floor next to Zach.  Zach beamed and leaned into me and said, “Rhonda, we missed you.”  My heart melted.  It felt good to be missed.  Then Zach said, “Where were you?” and I said at the Dr.’s office.  Zach then said, “Are you, O.K., Rhonda?”  When I told him I was O.K., Zach said, “Did the Dr. give you a lollipop?” That cracked me up.  It felt good to laugh.

I feel so privileged to be Zach’s teacher, and I often wonder, “Who’s teaching who?” because I learn so much from Zach’s love of life and his tender, good heart. I love watching him grow up and learn new things—every day it’s something new with Zach!  The latest thing is “I got it, Rhonda.”  Thank you, Zach, for all you bring to all of our lives!

Teacher Rhonda

Thank you Teacher Rhonda. For everything that you do.

Chris' surgery...

Sunday afternoon Chris, my mom and I drove down to the Burbank/Glendale area and got checked into our hotel. Took part in the hotels complimentary happy hour and then took a walk to find dinner. After that we called it and night and we all went to bed. Monday morning we were to report to the hospital at 10am to get checked in and for things to get going. When the hospital called me on Friday to go over the pre-admitting stuff, they also informed me that he was scheduled for a transesophageal echocardiogram, or TEE, at 12pm. They also needed to do pre-op lab work.

We left the hotel at 9am, not knowing what to expect from LA traffic. We made it to the hospital fairly quickly and the thoughtful guy Chris is, he went and filled the van up with gas so we didn't have to worry about it when it was time to make the drive home. We parked at the hospital and headed in to find admitting. We got through admitting about 9:30 and the guy who did all our admitting paperwork walked us to a lobby and told us to wait there and someone would come get us. We waited a very long time but there were also others who were there for tests and what not who had been waiting over an hour so while we were annoyed we didn't think anything of it. At 10:50am my cell phone rang. It was a nurse from the Short Stay area calling to see where we were. Once we rushed to where we should have been all along they got things going. The drew his blood, started his IV and got him hooked up to the monitors. They explained that the doctor performing the TEE wanted the blood work back before they could proceed so they were rushing that process. Things were moving right along and on schedule to start the TEE at noon. The specialist doing the surgery came in around 11:45am to check in with him. Shortly after they informed us that his blood work had been lost at the lab and they would be coming to re-draw it. They called the doctor doing the TEE and let him know things would be delayed about an hour. Shortly after, they found the blood. It had gotten stuck in the tube between the nurses station and the lab. By this time the doctor had already delayed getting there for the TEE and the specialist doing the surgery was not happy. Blood results were finally in and they inform me that they are going to do the TEE and then take him right in for surgery so it would be about 4 hours or so until the doctor came to talk to me.

We decided to grab some lunch while we waited but first we were going to unload some of the stuff we had in the car. We had a laptop, Chris' PSP, magazines, etc. Too many things to be dragging around the hospital that we weren't utilizing. We asked a nurse where the cafeteria and she explained that they had some food for sale but that their main cafeteria was under construction. We decided that since we had so much time, we would leave and grab some lunch and come back. We paid the $6 daily max for the parking garage. The parking garage that does not have in and out privileges. I drove around for a bit and found an El Torito. It was packed but we went for it anyway. We sat down and decided on their lunch buffet. The server came by and informed us that it was $3 Margarita Monday. Yes Please! I took a couple sips and it was heavenly. Cheap low quality tequila was just what I needed to take the edge off. I told my mom I felt guilty for not being at the hospital but admitted that it was a great distraction. I was getting a plate of food when my cell phone rang. I stepped outside to take it since it was really loud and crowded (It was $3 margaritas after all). It was the hospital. The nurse was frantic asking where I was. Long story short... they forgot to have Chris sign the consent form. FOR THE SURGERY. And being that he was already sedated he could not sign it. So I needed to sign it. And they couldn't start the surgery until I signed it. I told her I was on my way. I went back inside to tell my mom and decided that I couldn't have been very far from the hospital and I wasn't going to deal with parking and leaving again so I decided to jog/walk back to the hospital. I grabbed my handy IPhone, pulled up my GPS, and took off. It was a little less than a mile away. I probably made it back faster than I would have driving. As I am walking in the hospital my phone is ringing again. It is one of the doctors in the cath lab looking for me. Because... you know... Chris is LAYING ON THE TABLE. I sign the form. Asked 5 times if there is anything they could possibly need for me to be there for and walked back to lunch.

We finished up pretty quick and got back to the hospital. We expected to wait another 2+ hours to hear something so we set up camp in the waiting room. Shortly after someone called the volunteer desk to ask if anyone was there for Chris. I got a sinking feeling in my stomach. The doctor came out and sat down to talk to me. He explained that they were not able to do the ablation. He said, several times, that Chris' heart is "very abnormal". When they went in they shocked his heart back to a normal rhythm and his heart rate was low, which I could have told them would happen. Then he started looking around and he explained that all of the electrical currents in Chris' heart reacted very abnormally when he went near them. Because of that he did not feel comfortable doing the ablation because he felt there was no way he would have gotten off the table without a pacemaker and at his age they obviously want to do everything they can to avoid that. He called Chris' local cardiologist and discussed what was going on with him and they both decided that they wanted to implant a loop recorder. Basically what this does is record every beat that his heart makes. It is not attached to his heart the way a pacemaker or a defibrillator would be. Every so often he will check in with his cardiologist who will download all the information and can see exactly what his heart is doing at all times of the day. Chris has always had a pretty low heart rate but they want to see what is going on at night. This will hopefully buy him at least 5+ years without needing a pacemaker. Because Chris was sedated and could not consent to this procedure they could not do it until the following morning. I was finally able to see him a couple hours later. He was starving and uncomfortable. He had to lay flat on  his back for hours after they surgery because of the incision sites. They went in on both sides of his groin so he was pretty uncomfortable and had to have 10 lb sandbags on each incision site to help the blood clot. After feeding him some dinner I called it a night.

At 7:30 am this morning they placed the loop recorder. It was a fast procedure and Chris was awake through the whole thing. Afterward he had to be watched at the hospital for about 5 hours and then we were able to come home. His chest is really sore and it is hard on him to not be able to pick up the kids and we have to constantly remind the kids to be gentle with daddy. Zach and Chris rough house quite a bit so it is hard for Zach to understand and I feel like we are constantly on edge that he is going to charge Chris with a slam hug. We will followup with Chris' local cardiologist later in the week and talk about where we go from here.

The latest with us...

I completely failed at hitting 31 for 21. I think I barely hit half. In my defense, I have had a lot going on and I really feel that I succeeded in my mission. I think I truly raised awareness and helped educate people on Down syndrome.

Now on to my excuse as to why I failed...

The last few months have been a challenge, to say the least. The time has finally come to update blog world on what is going on.

For those of you that don't know my husband, my 37 year old husband, had a stroke. Ever since then, we have been consumed with doctor appointments, decisions, and lots of stress. After the failed attempt at converting his heart his cardiologist referred us to an electrophysiologist to talk about surgery.  There are no electrophysiologists in our county. Our HMO referred us to a doctor in the Los Angeles area which is about 3.5 hours away from us. We traveled down there a few weeks back and met with the specialist who informed us that he needs the surgery and he needs it soon. The surgery that he needs to correct his heart abnormality is a Cardiac Ablation. On top of that, he also informed Chris that he needs to be prepared for a pacemaker. He said there is about a 95% chance that he wont need one, but that it is something that is a possibility. In the state that his heart is in, for a guy his age, he should have a heart rate close to 200. His is in the 70s. The fear is that when they correct the abnormality and get his heart beating in a normal rhythm his heart rate will be so low that a pacemaker will be necessary. Which is exactly what happened when they did the cardioversion back in August.

After many phone calls and schedule changes we have a date. Chris' surgery will take place next Monday November 8th. Anyone that can spare positive thoughts and prayers, please send them our way that he wont need a pacemaker and that the surgery will be successful.

Happy Halloween!

This year Zach insisted on being Dance A Lot Robot and Hannah wanted to be Jessie. I am so thankful I know a very talented woman!

Frugal Halloween

A wonderfully talented friend made the kids costumes again this year. Pictures of those to come after Halloween. The one thing I needed for Hannah's costume was a hat for her Jessie costume. Online they sell for around $12-$15 plus shipping. And, they have been out of stock everywhere for months. A friend of mine told me she saw red cowboy hats at the Dollar Tree. I picked one up and tonight attempted to make it look like Jessie's with the white string weaved around the edge. It is not perfect and there are a couple differences from the "real Jessie". I am pretty happy with how it came out and the total cost was A DOLLAR!

Supplies:

• Red hat from Dollar Tree

• Black Sharpie to mark spots for holes

• Ruler that I found in the kids crayon box

• Hole punch

• Clean white shoe strings that Chris had (which can still be used since I did not cut them)

• Jessie doll for inspiration

Bullying

Never have I had such a fire in me to write about something that is on my mind yet my words do not seem to do my feelings justice. Please bear with me, I hope at the end of this to have a point, if not... enjoy the ride.

This morning I was trying to decide what to blog about. I haven't quite met my blog-a-day for the 31 for 21 and I really wanted to post something today. I came across a post with this link. I thoroughly enjoyed reading this article for many reasons. For one, we live in a small town and I have always had this dream in my head that if we stay in this town that Zach will be known, accepted and loved in our community. Two, the peer advocates is an awesome program that I just might be writing a letter to our school district about. 

Back to my first point. At Zach's latest IEP one of the biggest points I stressed, and that mattered most to me, was inclusion. Zach is in a special ed class at his school and having integration with the "regular" 1st grade class is something that is at the top of my priority list. I know a lot of parents who have kids with IEPs read this and might feel I am short changing him when it comes to the academic goals but of course that is not the case. I have such faith in Zach's IEP team that I knew that would not be something I needed to be worried about. They've got his back. When Zach meets goals before the dates we have set, they are the first ones to set new goals. Anyway, back to my point.... inclusion... last year it did not happen nearly as much as we'd hoped. A big reason for that is budget cuts and the Kindergarten teachers having close to 30 kids per teacher. I get that, but it doesn't mean I still wont push for more time for my kid. Not only do I think Zach learns a lot from other kids his age... I truly feel that Zach's social skills are going to get him further in life than any other skills he will learn. When Zach is older, I feel that him being able to be active in the community and having a lot of friends will take him very far. Being able to go out to dinner and display manners and be socially comfortable will help him live a fulfilled life. 

Now to talk about my second point. Peer advocates. This is something that should be happening at each and every school in America. From junior high through college. In my naive brain, I cant imagine it would take much, if any, funds to operate. Kids volunteer their time and they have meetings on lunch hours or as an elective class and a couple teachers or parents in the community give their time. Today has been called a day to prevent bullying. Millions of people (I included) wore purple today to support the teens who have recently taken their lives because of bullying. They were bullied because of their sexual preference. Because being a teenager isn't hard enough, now throw into that coming to grips with feelings that are perceived by some as wrong or bad. Now on top of that you are bullied. And not just playground teasing or snickers in the halls when you walk past the cool crowd going to your locker. No, times have changed. Now, even the ones who didn't have the nerve to make fun of you to your face have the anonymity of the Internet. They can cowardly sit behind a faceless computer screen and poke fun at every single thing that you feel self conscious about. And they can post it for your entire school and community to see or read.

I am in no way perfect. I am sure I was mean to someone from time to time. I was bullied for being the fat kid so I in turn bullied someone else to take the attention away from me and to try and make myself feel better. I like to think I was above that but I'm not. It is a vicious cycle. I do know that I was not a truly mean hearted person and I had a conscious so any teasing I dealt out was pretty tame.

Today I read something on Facebook that has bothered me all day and is the epitome of irony. Someone I love posted a reminder last night to wear purple to help raise awareness of bullying and in honor of those who committed suicide. Such a smart young girl to stand up for what she believes in. Right? She got several comments of support and then I read comments from her own flesh and blood, someone who should do nothing but love and support her, about how she got details wrong. Not only was her grammar picked apart, but her interpretation of the message. You could tell by the exchange of words that this is not an isolated incident. It pains me that so many people are disrespected by those who should be their biggest advocates. It is no surprise that people become depressed. I just hope the kind words that were said were taken to heart and she truly knows how much she is loved. And I hope that every other teenager whose family members put them down have someone to turn to for a positive influence.

If every student that recently committed suicide had an advocate in their school to stand up for them, or even just a supportive ear, maybe their family would not be grieving the way they are tonight. Suicide has got to be the hardest form of death to process. I know. My dad committed suicide 6 years ago and it is something I think about every day. It is something that I don't know you can ever fully have closure for. There are always the "what if" questions and the "could I have done something differently"  thoughts. I can only imagine how the parents of these young kids feel. It is senseless. It is unacceptable. 

Be the change that you want to see in the world. 

Unless you are a mean person, then just lock yourself in your house until you have a positive epiphany and please, please... don't pro create.

As heard....

This morning Zach was in his room picking out his clothes for school. He had been in there for a couple minutes so I went to make sure he wasnt pulling all the clothes out of his drawers. He was standing in front of his closet holding 2 shirts. One had a flying baseball on it and one had a stick figure playing drums with the saying "I Rock". He said "Mom... I need help choosing my shirt". I said "well, do you feel like a baseball player today, or a rock star?"... He smiled and said "baseball player"and put the other shirt away.

Love that kid!