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!

Spreading the word... guest blog

I was approached by a friend to do a guest post on her blog in honor of Down Syndrome Awareness Month. She is an amazing writer and I love reading and following her blog Mandyland.

I am completely touched that she wanted to do this. Her and I are both members of our local moms group and while I feel like I "know" her well virtually, we had only met a small number of times. I feel honored and proud that by reading my posts during 31 for 21 she wanted to spread the word about DS as well. I feel like my mission to spread the word is being fulfilled!

Please click here to read our joint post.

I knew it would be ok....

My cousin Danielle is 9 days older than me. Growing up we had shared family birthday parties, "Jeni/Dani nights" and we always got the same birthday and Christmas gifts. We would try to open our gifts at the same time so that we could both be surprised by more than just what color it was. When we were teenagers we went down two very different paths and while we probably wouldn't have hung out in the same crowds if we went to school together, it didn't much matter. If I had to pick any person that I would like to be more like... it would be her. I will never forget when we were all getting ready for her wedding. All of us bridesmaids were stressing about our hair and makeup and getting jitters before the ceremony started. She was the one to calm us all down and to be the soothing presence in the room. I love her dearly.



After Zach was born and we were told he might have Down syndrome, I thought about my cousin Dani and I knew it would be ok.

15 months earlier Dani gave birth to her beautiful baby boy Gabriel Tomas. Gabe came into the world 16 weeks early. He spent as many weeks in the NICU fighting for his life. Nurses and doctors urged Dani to "let him go". As if that was possible. I cant speak for her but I am sure Dani knew that he was meant to live and that this was her child and that was all that mattered to her.

Family and friends surrounded them with love and prayer and eventually they were able to take their sweet baby boy home. Sure he has health problems and has endured hospital stays and surgeries but the number of lives this little boy has touched is immeasurable. I am so thankful that she did not "let him go" because when I was faced with the challenge of accepting Zachary into my life I feel like I channeled her strength and I just knew that it would be ok. I knew that Zach would be accepted and that there would never be a shortage of love for my boy.

I feel like her and I have an even deeper bond than we ever did before. That we get it. We know that we can bounce questions off each other about IEPs or how to possibly make coffee wake us up faster and everything in between. I know I can call her at 6am to ask about seizures and she knows she can send me text messages with pictures of her kids butt to ask if a spot looks like a staph infection. I wish there wasn't 300 miles between us and that we could spend more time together and our kids could create the memories that we have of family dinners and gathering at the grandparents house.

Dani and I have had the unofficial conversation (we really need to get that in writing) that if anything were to happen to Chris and I that her and her amazing husband Omar would raise our kids. I cannot imagine anyone else, with such genuine hearts, that would love and raise our kids the way we would want.

Dani & Omar with Zachary


The boys.... this was possibly their first meeting...


The boys were not happy to be laid down together... this was the best we could do...






I love you Nani Bit Bit!!

31 for 21 ... Single Dad Laughing

The other day I posted a link to a story on Facebook from Single Dad Laughing. I posted this entry that I had read with tears in my eyes. It is inspiring and a great reminder to anyone who spends time with children.

Today I am linking to him again for his beautiful, heartfelt words for his sister, who had Down syndrome. The way he talks about her is so touching and real.

Please take the time to click here and read it for yourself. I don't think you'll be disappointed.