Continue to Pray

A few of Team Brave Heart Mama's, including myself, went and visited Alyssa's family last night. Alyssa was very uncomfortable and having some blood pressure issues so we visited with her Mama a few seconds to let her know we are praying.
This is the update from this morning:
"Alyssa has had a few set backs in the last 12 hours or so. Her GI system is having a tough time getting started again and causing her considerable pain. She has been screaming a lot with very little sleep and it has been really difficult for Mom and Dad. They still aren't allowed to hold her yet and are having a really hard time comforting her. The doctors have re-inserted a tube to clear out her stomach and have restarted her IV blood pressure medicine. They have increased her pain medication and gave her a sedative last night. She finally was able to get a couple of hours of rest. "

Updates

I'm getting ready to go visit Alyssa's family myself but I did receive a message from another team member:
Yesterday afternoon-
"She had closed heart surgery (went through her side) and was not on the heart-lung by-pass machine. She was off the vent before her parents saw her in the PICU! Alyssa is recovering quickly....keep the prayers coming."
This morning-
"Let me start by saying Alyssa is the most amazing little girl I have ever known. Just hours after surgery the doctors had Alyssa sitting up in bed and talking. She was saying "all done" but I'm sure those words were music to her parents ears! Alyssa had a little rasp when breathing so the doctors did a chest x-ray and it came out clear. They did a breathing treatment this morning and hopefully this will clear up her lungs and airway. The doctors also took Alyssa off her Oxygen tube and started changing her Blood Pressure medicine. They want to try to give Alyssa some liquids today to see how her digestive system reacts."
I'll update more tomorrow.

Please Pray

I know the walk was very emotional for all of our families but, especially for Alyssa and Logan's. Alyssa is undergoing her first open heart surgery as I type in the wonderful hands of the nurses and Dr.'s at Kosair Childrens Hopsital. Alyssa's Mommy and Daddy were so strong and came yesterday to walk in Alyssa's honor. We are praying for you Alyssa.

Also, Logan's family was in attendence - Logan is a HLHS survivor as will be undergoing his Fontan in just 2 short weeks.

Heart Walk After Party 2007

Thanks to Shanna & Dan for opening your homes to the Team Brave Hearts crew for an after party. As you can see from the pictures, we had a blast. It was beautiful to sit back and see these children who have overcome and are still overcoming so many obstacles in their little lives to just be able to be kids and have fun - it brought tears to my eyes.

Kentuckiana Heart Walk 2007

The Walk was amazing!!! We have alway's been included in the Louisville Friends & Family team's and on Fri. night the president of AHA called and said that because of how much work we had done, we were going to be recognized as a company team and had our own spot at the beginning as a top walker team!!! Usually company teams are ranked and then Friends & Family teams are ranked - weren't we surprised to be the #1 Friends & Family team and the #5 Company team (out of some major corporations) raising an amazing $20,000.00 - WOW! Goes to show that everyone can make a difference - we started out as 3 families and have grown to 16. We were also asked to go live on the news with Angie Glotzbach (a heart survivor herself) on WAVE3 Louisville and quoted in the Courier Journal http://www.courier-journal.com/apps/pbcs.dll/article?AID=2007708260624 - getting awesome opportunities to raise awareness in so many ways.

Team Brave Hearts Kentuckiana AHA Heartwalk 2007

All of you that keep up with Evan's blog have been touched by CHD's in some way, either by Evan or your own child so, I wanted to post a link to his donation page for the American Heart Association's Kentuckiana 2007 Heartwalk. This is our 3rd walk and we will be walking again this year with other CHD families under "Team Brave Hearts". Our main goal in participating in this walk is to raise awareness of CHD's and funds for much needed research. If anyone would like to donate, his personal donation page link is: https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=215841&lis=1&kntae215841=07A614B828344CA5959CA8FE623F5775&supId=136764053

1st Day of Pre-School

Camping Trip

T-Ball

Pictures

This has been such a week. We went camping on Nolin Lake for the weekend and had a blast with Eric's brother and sister in law. We came home Sun. and got things ready for Evan's first day of pre-school. Evan told me his belly hurt before bedtime and woke up about 10:30 and started vomiting and continued every hour for the rest of the night and started with the poo's Mon. morning so he missed his first day of school. I did about 10 loads of laundry Mon. and took Evan to the Dr. to confirm he had a 24 hr. virus. We rested most of Tue. and Evan's yuckiness stopped but he started running a 101.6 fever which also went away later on Tue. Evan's Dr. said as long as his yuckiness stopped and his fever was gone that he wasn't contagious so Evan got to start school on Wed. but, I'm not sure that was the best idea. They said he had lots of fun, was well behaved and a good helper but that at naptime he said his belly hurt and that he needed his Mommy to tell her he loved her, awwwhhhh. My Mom picked him up from school and they said he had been crying - she said he was pitiful. We had bank night for the heart walk on Sat. last night and last I heard we were less than $2000.00 away from out $20,000.00 goal - GO TEAM BRAVE HEARTS!!! We woke up this morning to hear there was a horrible accident on I-65 and that we would need to take alternate routes into town - turned our usual 1/2 hr. drive to 1 1/2 hrs. and then about a mile from my Mom's Evan said he needed to go to the potty and didn't make it. I walk into my Mom's and she is on the couch sick - ARGH - I can't handle much more of this. I'm at work just to catch up for an hour or two and then going to get him to go back home. Enjoy our summer and school pic's.

Brave Hearts Golf Scramble 2007

All I can say about Team Brave Hearts Golf Scramble 2007 for AHA is - WOW. We had a wonderful turnout of 80+ golfers despite the heat and raised over $5000.00 for the American Heart Association. It was a lot of work but so rewarding and our team is growing by leaps and bounds - we are a force to be reckoned with here in Kentuckiana. I'm amazed and blessed by the support we have received from our families, friends and our community. The walk is in two weeks. We also have a movie that was played during the scramble inside the clubhouse that got a lot of recognition from our local AHA president and I'll be posting it soon so, come back and prepared to be touched.

August = Busy

We have been having lots of fun and staying insanely busy. Evan started Wee T-Ball back in June with 3 of his best friends. They are so cute and it's been wonderful spending time with our friends every Saturday watching our boy's act crazy together on the field. This has really thrown me for a loop however since I work full-time and Saturday was my cleaning day and then Sunday was family/church day - now we are gone most of the day Saturday b/c after the game of course everyone has to go have lunch and then it's nap time. My house show's that we have been busy this summer - it makes Sunday such a busy day but, I wouldn't trade this time for anything - not even a clean house. Work has been busy as well - 2nd Qtr. presentations and meetings - it's our 100 year anniversary and we have been doing lots of fun stuff to celebrate. Eric has been working 70 hour weeks on top of all of this, making me feel sometimes like a single mom. I hate it for him, feel like he is missing so much and feeling a little overwhelmed myself but, this should pass soon - he is in heating/air and this is their busiest season. August does not slow down for us - AHA Dance Benefit, AHA Golf Scramble, AHA Heart Walk, camping trip, Evan starts pre-school & ending with a much needed Myrtle Beach vacation. Blogger is being mean and won't let me download my slide show so I'll leave you with a few pic's and try again later.

Some New Pic's

Nothing much going on here. We are have had our first meeting and kickoff party for the 2007 Kentuckiana Heart Walk. I'm so excited and need to get to work - the walk is going to be a whole month sooner than it usually is - so I have less time than I think. Here are some pictures from our meeting and unsuccessful group picture - boy, were the kids not having it that day. Also some pic's from the AHA kickoff at the Louisville Zoo.

Team Brave Hearts 2007

Lucas, Evan, Caleb,

Benjamin, Alyssa and Logan

Look at Evan, Caleb and Logan - they are fed up.

So we tried the cute sliding board group picture

this group picture was just not happening -

you can tell from a previous post that our golf scramble flyer ended up being done with a collage of individual pictures - LOL.

Friends for Life!!! Guests of Honor at the AHA 2007 Kentuckiana Heart Walk Zoo kickoff party.

Having lots of fun at the zoo.

More Pic's

Daddy and Evan feeding the Lorikeet's at the zoo.

Evan saying ahh sweetie to the Lorikeet.

Our ending ride on the zoo train. AHA had their kickoff party at the zoo b/c that is the winning prize this year - family season passes!

Prayers today for baby Elijah

Baby Elijah is having open heart surgery today - send up some prayers for him and his family - most of us unfortunately know how hard it is to hand over your little one.
http://www.babyporta.blogspot.com/

Cute little sayings

Eric and I had a very relaxing and pampering weekend in Brown Co. and I highly recommened The Manor at Tabor Hill to anyone that would be there visiting. It was beautiful weather, we could not have picked a better weekend. I did okay during the day but, once Eric went to sleep I really started missing Evan and other than enjoying alone time with Eric this weekend taught me that I'm a very lucky person to have been chosen to be Evan's Mommy and that although he is a rowdy and loud 3 year old that I need to treasure all of this and slow down a bit and remember these moments with him. I called and checked on him Sat. night and my Mom asked if he wanted to talk to me, he said no but that it was getting dark and that he was ready to go home, kept telling my Mom that it's dark out and I'm supposed to be home when it's dark in my bed. He started to cry and that made me sad... Mom said that when they went to bed she told him that we let him come stay with her because my Dad was out of town and that she would have been lonely and Evan said, "Awwhhh... Mamaw, that's what friends are for." She said he snuggled in and went to sleep after that, isn't that sweet...

Brown County IN. and Golf Scramble planning

Well, for the first time since Evan's birth, Eric and I are going away for the weekend just the two of us celebrating our 7th anniversary. We have chosen Manor at Tabor Hill Bed & Breakfast in Brown Co. Indiana - http://www.manorattaborhill.com/guestrooms.shtml - the master suite with in room massages for both of us and champagne before bed and a 4 course breakfast the next morning. I'm looking forward to some alone time and just slowing down a bit. There is lots of shopping to be done in Brown County and outlet malls on the way home so, I'll have to be careful to not go overboard. My parents will be entertaining Evan for the weekend and he will probably not even notice Mommy and Daddy are gone - I for one will definately miss him - hence the reason Mommy and Daddy have never left him overnight before now. I hoping although I will miss him that I will be able to enjoy this weekend away and also hope this is just what Eric and I need to re-connect.

Tomorrow AHA is hosting a kick-off party at the Louisville Zoo for top-walkers from 2006 and our 'Team Brave Hearts' will be in attendance. Evan is so looking forward to seeing the animals and playing in their new water park with his heart buddies. We are just starting to get things moving for our 2nd annual 'Team Brave Hearts' Golf Scramble which will be held at Glenmary Country Club on Aug. 12th. I have attached the flyer we are putting up for that. I'm so excited about our team this year and how many CHD families have joined us - this is such an amazing group to be a part of.

Cath. Results

I'm going to try to explain Monday's cath. results in the best way I know how - I'm still a little unsure myself and have a meeting with Evan's cardio today to get a better understanding. Evan was a real trooper even though he realized the minute we pulled into the parking garage where we were and was a very brave little boy the whole day. Once sedated the cardio came out and told us that today could be just exploratory, that even though the Vent. Perfusion Scan showed that the pressures were off between the left and right lung that they wouldn't know until they got in there what was really going on. They came out about 2 hours later and called us in the discussion room - aka the room that makes me feel like I could run screaming - and said that there were no benefits to doing another stent right now - that the pressures were really the same as they were post-stent last April and that the right pulmonary artery was narrowed now as well but that was actually helping push blood flow through the very narrowed left pulmonary artery. Then the blow - Evan will require another open heart surgery to place a conduit. I was totally stunned and have lived in a nice little world of cath. procedures only since he was 9 months old. I said I understood what he was saying but really I'm not sure - I believe that his valve is leaking more and both right and left pulmonary arteries are narrowed which makes the conduit necessary to replace them and the valve. His cardio did say that Evan is in excellent shape right now and they hope to put this off for as long as they can - even mentioning 10 yrs. If they could wait this long it is possible that only 1 surgery would be needed and they could place an adult size conduit and valve in - all in Evan's timing I suppose. They did start him back on Digoxin. He urged me to treat Evan as a normal child. We will continue our appt.'s with the cardio and then once a year do a Vent. Perfusion Scan and a cath. to see how things are going. Evan woke up from the cath. in recovery and the nurses came out and said he woke up and said, "My name is Evan, I'm 3 and I want my Mommy and Daddy" and continued to try to get up and walk out. They said they had to keep the popsicles coming to keep him still. He's not said a word about it since we left the hospital and is already back to his normal self. Me - I'm struggling with the thought of having to go through this again but am wondering if I'm ever going to learn the lesson of "Cast all your cares upon him, lay all of your burdens down at his feet and anytime I don't know what to do, cast all my cares upon him."

Date for the cath

We just got the call from Evan's Dr. and the cath. will be on May 25th. That is the day Eric and I would have left on our cruise had I not cancelled it - weird huh - instead of the Bahamas we'll be in Kosair's ICU.

ARGH.... the Dr. just called and b/c of scheduling the cath. has been changed to Monday, April 30th.

Rough Draft of AHA Poster

They sent us a copy of the rough draft of the poster they are going to use from the photo shoot last week. Evan is second from left and I couldn't help but laugh when I opened up the attachment - it's hard to take a good picture of one 3 yr. old, besides four. They did good.
We are getting ready for the 2nd Annual AHA Team Brave Hearts Golf Scramble and the planning is just beginning. The scramble will be on August 12th and the walk is on August 25th. The next few months will be very busy but, I find great fulfillment in being a part of this wonderful team and for the lifelong friendships we have made. More to come on that.
No word from Dr. McOmber as to when Dr. Recto's team will be available for the cath. - I'm sure we will hear soon. Sometimes the waiting is hard but sometimes getting a date is hard too - if that makes sense. The unknown is stressful but, when there is a date there is always worry to fill the spot. I've always been an extremely anxious person (probably an understatement) and for the 1st time in my life I'm seeking help to get ahold of that. I'm trying really hard.... I do NOT want to waste life away worrying. It's really hard for me. Maybe I'll go into more details at a later date but, just say a prayer for me.