Saturday, November 28, 2009

Jump Rope for Heart

I'm going to have to break up this post into a few posts so as to keep them a little shorter! I've had the last week off and that did not equal extra blog time but I had a great week off with my little guy. I have pictures to share with each post - I promise!

The Friday before school was off for Thanksgiving break, Evan's school participated in Jump Rope for Heart. Evan brought home the little flyer that asked kids to jump for other kids whose hearts aren't perfect. The flyer asked you who you were jumping for, I just smiled and wrote in - "myself". AHA had the same little website set up as they do for the Heart Walk to raise money. Since I felt like I had just asked all family and friends to donate for the walk I didn't send emails out like crazy and just told grandparents and of course Munc. On Evan's website I put the same picture and story as I did for the walk to make it easy. One of Evan's heart buddies is also a school buddy and his Mom had set his little webpage up the same way. We talked about how awesome it was they were doing Jump Rope for Heart and that we should let the boys wear their heart walk Team Brave Hearts shirts the day they jumped. I was in the carpool line the next day and the vp came up to the car and asked that I pull into a parking place. She had a smile on her face so I figured my angel had done no wrong! I pulled in and the PE teacher came walking with Evan. They said they had heard Evan had had heart surgery (gasp - heard about it - you better have read that book I wrote when I registered him, LOL) and would I have a little something they could read to the school and show them Jump Rope for Heart helps kids just like them - kids even in their own school. I said of course... told them we had worked with AHA for the last 5 years and that Caleb was also a heart kid and they are on a team called Team Brave Hearts and they have little shirts that say I'm a Survivor... yada yada yada. They were thrilled we were willing to participate and Evan and Caleb were excited to be introduced to the school as Heart Heroes. Caleb's Mom and I worked together and made a flyer with some of their picture on it and a kid version story of their walk with heart defects. Caleb's Mom and I came to the Pep Rally with cameras and camcorder ready and proud smiles on our faces. The pep rally began with Jump Rope for Heart hoorays. The PE teacher was called up and said she wanted to share a story and read the flyer and then told the kids that these 2 Heart Heroes were Falcon students and they began to cheer. Evan and Caleb stood up and walked to the front with their little arms linked. We stood with tears streaming at how awesome it was that our school would recognize them in such a way. Evan and Caleb said that they got "big applause." I think they both felt very special! Isn't that awesome?!? Enjoy the picture of the Falcon Heart Heroes.

Wednesday, November 11, 2009

Cardio Appointment Update

Evan had a cardio appointment yesterday. I love that Evan loves to go there. He pictures it more going to visit friends than going to the Dr. That speaks for just how awesome our Dr. and his staff are. While doing the echo Dr. McOmber and Evan just talked and laughed trading Disney stories as he went the week after us. When he was done Evan asked Dr. McOmber if everything was great and he told him that the straw wasn't great - Evan asked him if it was broken and he told him absolutely not and that no cath was needed - Evan gave a big waahoo to this. Dr. McOmber told us that there has been no change since June. Since the pressures changed so quickly from April to June he expected them to continue to get worse and that isn't happening. We expected to be scheduled for a cath. on Christmas break but Dr. said that since there isn't a need for something to be done right now he didn't think it was time for a cath. He said that Evan's heart looks great, the donor valve isn't leaking one bit and his heart isn't enlarged. This pesky left pulmonary artery is always going to give us fits I guess. So we were told to have a wonderful holiday season and we could come back in Feb.! He did reassure us that if he thought Evan was going to need a cath in early 2010 he would go ahead now while he was on break but that, he didn't think that would happen. Evan has now gone 1 whole year without a cath, surgery or even a vent scan!

Have to share something funny that happened this morning. Last Fri. I went Christmas shopping and got some great deals. I put all the stuff in the very back of our Explorer and told Eric to make sure to move it to the basement and hide it when he got home. Eric has been working 16 hr. days and hasn't been home to move the stuff. I can't move it because Evan is always with me. That leads me to this morning...When I get into the car rider line at school, Evan always unbuckles and gets into the front passenger seat. Today when we got there he unbuckled but stayed in the back seat bouncing around and then I heard,
Thankfully his little friends birthday is Sat. and that is what we got him. I said, "Evan, get up here now, those are for Lucas."
Evan - "OOOHH MOMMY, I think I saw something big and it was black and red was it something Micky Mouse? You know I had Bendaroos on my list too... I really want Bendaroos - you didn't forget did you?"
Mommy - "I didn't forget but don't look back there anymore. There are things for you from Mommy and Daddy for Christmas. If you see them I will have to take them back."
Evan starts crying - "Mommy... I think I did see Pixos... please don't take it back."
Mommy - "Don't look again and I won't take anything back."
Evan - "Well then can you tell me if I saw Pixos and what else is back there? If you tell me I will tell you what I'm getting you for Christmas."
Mommy - "I don't want to know what I'm getting for Christmas and no I'm not telling you."
Evan - "Okay... I can't wait for Christmas. I've only been bad a few times for for the most part I've been really good."

The rest of the time he talked all about Santa and was so excited. I hate that he saw his gift but hopefully he isn't sure and it was so cute!

Enjoy a pic from Disney of my brother and Evan.

Monday, November 09, 2009

Prayers Needed

Lots of prayers are needed today for several friends and family.

Pray for Elijah who is in a cath right now

Pray for Stellan who is not doing well and needs to be stable for an emergency procedure to save his little life

My Aunt Gwen is not doing well and was admitted to a local hospital yesterday and is in ICU. They know she had a stroke earlier in the week and that she had not been giving herself her insulin shots. She is having seizures and vomiting. This Aunt is the grandma of my cousin I have asked prayer for before who is battling cancer. Please pray for the family.

Evan's cardiologist appointment is tomorrow. Pray for Evan's pressure to remain stable.