Chris turned 38 yesterday! We celebrated on Sunday (since we both worked yesterday) with my first attempt at lasagna and ridiculously chocolaty chocolate cake. Surely he would not have asked for items that needed to be baked had he known we would be having a crazy heat wave and he even said several times that we could have something else for his birthday dinner but I wanted to give him what he asked for so... lasagna and cake it was! It was 106 at our house on Sunday. Yesterday there was record breaking heat and was 113 where we work!
Right around his birthday last year is when the bumps in the road of our lives started. I don't think I even had the time or energy to blog about it all but here is a quick recap...
Chris had some issues arise at work that resulted in him almost losing his job which caused a huge amount of stress and tension.
While vacationing at Disneyland, had to take Zachary to the ER with breathing problems, told he has asthma.
My grandmother went through months of health problems and weeks in the hospital and almost died. Twice.
Chris appendix almost burst and had emergency appendectomy
Papa Don passed away
Zach had a seizure
Chris had a stroke. Learn of Chris' heart condition and in the near future will be exploring the options on how to treat going forward.
Can I please get off of this roller coaster?!?!
Tuesday, September 28, 2010
Friday, September 24, 2010
Sleepover!
This weekend we had Max and Molly spend the night. Their parents have saved us a few times by keeping our kids and we wanted to repay the favor. The kids had a blast. Zach and Max have been friends for a really long time. It is cute to see how they have grown.
The gang (I love the way Hannah and Zach are looking at each other. And the fact that they chose to set up camp next to each other)
The boys
The girls
Siblings
The gang (I love the way Hannah and Zach are looking at each other. And the fact that they chose to set up camp next to each other)
The boys
The girls
Siblings
Friday, September 17, 2010
Proud Mom Moment
Last night we went to a picnic at Zach's school. It was nice to have time to sit and chat with his teacher and one of his aides. It warms my heart to see the relationship they have with him and experience the love they obviously feel for my boy. They are such a huge part of Zach's life and I was glad to be able to talk with them in a relaxed setting. Since I don't get to do the drop offs and pick up's because of work I rarely get a chance to talk with them face to face. Emails and notes back and forth in his backpack can only do so much.
Anyway... on to the proud moment...
His aide says to Chris and I "He is the smartest kid with Down syndrome that I have ever met. And I have worked with a lot".
Can I get an "Awwww"....Or how about a "Hell Yes!"
I could tell she was completely sincere. Like she was saying "this kid is going to do big things, no doubt about it". (For the record... that was not a direct quote from her.. that was just what her facial expressions would have said had they been able to talk)
I have always known my kid was brilliant but I also have limited experience with individuals with Down syndrome so it is hard to know where he falls in comparison. Not that you should ever compare kids but... you know what I mean?
Here is a picture of him from last night working really hard at the hula hoop.
Anyway... on to the proud moment...
His aide says to Chris and I "He is the smartest kid with Down syndrome that I have ever met. And I have worked with a lot".
Can I get an "Awwww"....Or how about a "Hell Yes!"
I could tell she was completely sincere. Like she was saying "this kid is going to do big things, no doubt about it". (For the record... that was not a direct quote from her.. that was just what her facial expressions would have said had they been able to talk)
I have always known my kid was brilliant but I also have limited experience with individuals with Down syndrome so it is hard to know where he falls in comparison. Not that you should ever compare kids but... you know what I mean?
Here is a picture of him from last night working really hard at the hula hoop.
Sunday, September 12, 2010
Happy 3rd Birthday Hannah Rose!!
Dear Hannah,
It is hard to believe that 3 years has passed already yet I cant believe it has only been 3 years. You fit so perfectly into our family. You bring such an energy to our lives and you and your brother are the best of friends. You understand what he is saying better than we do. You can out talk and out smart most kids your age and ask quite often if you can go to school. However, you don't want to just go to any school, "Princess School" is what you ask for. You have a way of melting my heart with your smile and the sweet things you say. You love to give us kisses when you know we need them most.
You also have a way of making me want to run screaming from the house. You have an attitude. A big one. You also have a shriek that makes us cringe. If you don't get your way, it generally results in a long drawn out crying fit that does not end until we can come to some sort of compromise. You run us. And you know it. But I know this just means you are going to be a strong minded young woman and I wouldn't have it any other way.
I love you more than you will ever imagine my sweet girl.
Love,
Mommy
You wanted a party this year and you asked for a princess party so that is what you got!
It is hard to believe that 3 years has passed already yet I cant believe it has only been 3 years. You fit so perfectly into our family. You bring such an energy to our lives and you and your brother are the best of friends. You understand what he is saying better than we do. You can out talk and out smart most kids your age and ask quite often if you can go to school. However, you don't want to just go to any school, "Princess School" is what you ask for. You have a way of melting my heart with your smile and the sweet things you say. You love to give us kisses when you know we need them most.
You also have a way of making me want to run screaming from the house. You have an attitude. A big one. You also have a shriek that makes us cringe. If you don't get your way, it generally results in a long drawn out crying fit that does not end until we can come to some sort of compromise. You run us. And you know it. But I know this just means you are going to be a strong minded young woman and I wouldn't have it any other way.
I love you more than you will ever imagine my sweet girl.
Love,
Mommy
You wanted a party this year and you asked for a princess party so that is what you got!
Saturday, September 11, 2010
Project Surf Camp
I have been behind lately on blogs but did not want to forget to post about this. Zachary had the opportunity to participate in an amazing program this summer called Project Surf Camp. This is an awesome non profit organization that takes individuals with special needs surfing. They operate on donations from participants that are only a fraction of the operating cost but they will never turn a camper down if they are unable to pay. They recently received a grant from Pepsi in the amount of $50,000. Pepsi, instead of buying outrageously priced Super Bowl Commercials, donated $300,000 (that I am aware of, it could be more) to several non-profit organizations across our country. If we were a soda drinking household they would definitely have our business!
Zach was pretty hesitant about the whole thing to begin with. We had to force him into the wetsuit. I knew that once he got out there he would love it. He did great and had a wonderful time. He didn't get up on his feet this year but... he is only 6! We look forward to him participating next year.
Here are some pictures:
"But I no want to wear this!"
Pre-surf pep talk with my Daddy
Warmups
Learning the moves
Headed out to the waves
Riding one in
A picture is worth a thousand words...
Hi Fives for his teachers
"This is so fun!"
Zach was pretty hesitant about the whole thing to begin with. We had to force him into the wetsuit. I knew that once he got out there he would love it. He did great and had a wonderful time. He didn't get up on his feet this year but... he is only 6! We look forward to him participating next year.
Here are some pictures:
"But I no want to wear this!"
Pre-surf pep talk with my Daddy
Warmups
Learning the moves
Headed out to the waves
Riding one in
A picture is worth a thousand words...
Hi Fives for his teachers
"This is so fun!"
Friday, September 10, 2010
The latest on Chris
2 weeks ago Chris and I headed up to the hospital for Chris' Cardioversion procedure. They took him back to the waiting area for outpatient procedures and got his IV started, took blood and got the heart monitors on him before calling me back to sit with him. We were there chatting with the nurse for about an hour before the cardiologist got there. His doctor asked me if I wanted to stay to watch it. Sure. I like medical stuff and I have watched my fair share. I watched my moms laser eye surgery on a close up TV screen while she was having it done. I thought it was really cool when they cut the eye ball and pulled the lens back to access the cornea. This would be no biggie.
They put the pads on him. One on his chest and one on his back. They administered the sedatives through his IV to put him to sleep. They charge up the machine. The machine has a warning saying that his pads are not reading properly. They cant figure out why. The machine was reading his EKG information so they knew it was working. He charged it up again and said "Clear!" and pushed the button and nothing happened. Then they realized the wires were not connected to the pads that do the actual shock. I said "You guys are not making feel very good about this!". They get him plugged in and the doctor charges the machine back up and says "Clear!" and just like you see in the movies, Chris' whole upper body lifts up from the gurney. He opens his eyes and looks around. The doctor tells me that it didn't work. He would have to shock him a second time. Chris was still looking around so they gave him another small dose of drugs. I told them I had to leave. I could not watch that again.
I went out to the waiting room and started to worry when a lot of time passed. The doctor finally came out and said that the second shock did work but now he was concerned because his heart rate was in the 30s at rest. 40s when he asked him to get up and move around a little bit. He felt there was some sort of congenital problem and that the top and bottom chambers were not "talking to each other" properly. He still felt ok with Chris going home that day. Said there was nothing urgent that was of concern but that we would talk about him at the followup appointment the following week. He said he expected that Chris would get dizzy easily and that he would not be surprised if he passed out. It was a Friday so he gave me his cell phone number to contact him if we had any problems or questions over the weekend.
I went back to see Chris. I didn't tell him too much at the time because I did not want to give him more to worry about. We were able to leave fairly soon after. We came home and he took a nice long nap. He felt pretty good the next day other than some soreness in his chest. I could hear the difference in his heart beat when I put my ear to his chest. I have become a novice in distinguishing the different states of his heart beats. The following Monday he had to go in to have his blood levels checked and they checked his pulse and said he was irregular again. Not what we expected, or wanted, to hear! I listened to his heart that night and it did sound a little irregular, but not the same as it did post stroke when he was in Atrial Fibrillation. We had a followup appointment with the cardiologist on Wednesday and he said that Chris was back in A Fib. Atrial Flutter to be exact. He said he uses the terms interchangeably but that the A Flutter was a much more organized rhythm than it had before. Last Thursday at work Chris felt his heart beat pretty hard and he got slightly dizzy. When we got home I listened to it and low and behold, it had converted itself back into a regular rhythm. Today, it converted back. It is a very nerve racking state of unknown right now.
At the last appointment with the cardiologist we talked about options from this point on and when we have more information on how he is going to proceed, we will discuss them with everyone.
Thank you to everyone for your continued thoughts and prayers!
They put the pads on him. One on his chest and one on his back. They administered the sedatives through his IV to put him to sleep. They charge up the machine. The machine has a warning saying that his pads are not reading properly. They cant figure out why. The machine was reading his EKG information so they knew it was working. He charged it up again and said "Clear!" and pushed the button and nothing happened. Then they realized the wires were not connected to the pads that do the actual shock. I said "You guys are not making feel very good about this!". They get him plugged in and the doctor charges the machine back up and says "Clear!" and just like you see in the movies, Chris' whole upper body lifts up from the gurney. He opens his eyes and looks around. The doctor tells me that it didn't work. He would have to shock him a second time. Chris was still looking around so they gave him another small dose of drugs. I told them I had to leave. I could not watch that again.
I went out to the waiting room and started to worry when a lot of time passed. The doctor finally came out and said that the second shock did work but now he was concerned because his heart rate was in the 30s at rest. 40s when he asked him to get up and move around a little bit. He felt there was some sort of congenital problem and that the top and bottom chambers were not "talking to each other" properly. He still felt ok with Chris going home that day. Said there was nothing urgent that was of concern but that we would talk about him at the followup appointment the following week. He said he expected that Chris would get dizzy easily and that he would not be surprised if he passed out. It was a Friday so he gave me his cell phone number to contact him if we had any problems or questions over the weekend.
I went back to see Chris. I didn't tell him too much at the time because I did not want to give him more to worry about. We were able to leave fairly soon after. We came home and he took a nice long nap. He felt pretty good the next day other than some soreness in his chest. I could hear the difference in his heart beat when I put my ear to his chest. I have become a novice in distinguishing the different states of his heart beats. The following Monday he had to go in to have his blood levels checked and they checked his pulse and said he was irregular again. Not what we expected, or wanted, to hear! I listened to his heart that night and it did sound a little irregular, but not the same as it did post stroke when he was in Atrial Fibrillation. We had a followup appointment with the cardiologist on Wednesday and he said that Chris was back in A Fib. Atrial Flutter to be exact. He said he uses the terms interchangeably but that the A Flutter was a much more organized rhythm than it had before. Last Thursday at work Chris felt his heart beat pretty hard and he got slightly dizzy. When we got home I listened to it and low and behold, it had converted itself back into a regular rhythm. Today, it converted back. It is a very nerve racking state of unknown right now.
At the last appointment with the cardiologist we talked about options from this point on and when we have more information on how he is going to proceed, we will discuss them with everyone.
Thank you to everyone for your continued thoughts and prayers!
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