Non Cooking Sweet Tea Summer

It's been crazy here lately. I feel like I'm running around like a mad woman. Work has been crazy and that is all I'm able to say about that. Crazy. I'm thankful I have a job and for the insurance it provides for my family. There are so many around me who no longer are able to say that and, that is scary.
Evan just finished up his 5 days a week for 3 weeks swimming lessons. He loved it and the young lady who was the instructor was so great with them. Evan loves her and we hope to get him signed up for her swim team. I'm glad he enjoys swimming so much and really came a long way from the first lesson to the last. We haven't had a meal at home in forever. I'm ashamed to admit that. It is so hard when you work all day, leave work and get Evan and go straight to swimming lessons. After swimming lessons my girlfriend and I look at each other with sweat dripping from our foreheads and say, "what's for dinner?" I have become addicted to McAlisters sweet tea. If you come visit me that is what we will have for dinner!!!
Talking about addictions... our friends invited us to their family 4th of July get together. Her father in law's favorite holiday is the 4th of July and he does it big! He had some amazing fireworks. Evan wasn't really interested. Want to know why? The reason is that grandpa bought a case of those popper things and gave Evan no less than 20 boxes. All Evan did was walked around popping those things on the ground. We would say, "Ohhh... Evan, did you see that?" He would reply with, "huh??? where are my other boxes of poppers?"
My Mom turned 66 on Sunday and we had everyone over to grill out. We couldn't believe that Mamaw beat us all and was the champion cornhole player!
We had some time together as a family on Fri. night and Evan wanted to go see the new Ice Age movie and also the zoo. We have passes to the zoo and I had planned on taking Monday off and taking him then so I talked him into only seeing the movie. When the movie ended he looked up at us with his long eyelashes and said, "It would be really nice to go to the zoo too and walk around for a bit." The zoo is open Fri. night from 7-8 for zoo members only so we ran up to the gates at exactly 7 and got to stroll around for an hour together. It was nice to be there just the 3 of us and no crowd. We really enjoyed that hour together. The picture is of my guys that night.
P.S.
Could you all please say a prayer for my cousin. Her son is just a year younger than myself and has been battling recurring renal cell carcinoma. He went home yesterday to spend what he has been told the last few weeks of his life with his family. A mothers worse nightmare coming true and my heart aches for them.
www.caringbridge.org/visit/ericmullinix/journal

Appointment Update

The cardio appt. was neither good or bad but rather status quo. Nothing has changed since our appt. last month. His weight is the same, his height, his echo, the pressures, etc. are all the same. Cardio said he was encouraged by this. We are to continue once a month appt.'s until there is change. When pressures do change we will be headed to the cath lab and possibly another surgery. So we will have to adjust to this new normal for us. We love our cardio although we wish we weren't seeing him monthly. It is scary for me to know we will be waiting month to month to see if things change. The unknown is what always puts me on edge but, I have to get better at this. He said to go ahead and make our plans for Disney in Oct. but that to explain to them that there is a possiblity that we will be cancelling because of open heart surgery. That's hard to hear but have to remember that we are lucky that it is only a possiblity. He said Evan's heart looks awesome and show's no signs of the high pressures from this narrowed artery.
Something funny... our cardio (and his staff) always get a kick out of Evan and his long winded stories. He asked him if he was getting excited about starting Kindergarten. Evan replied, "yes and I plan on getting into lots of trouble." They all laughed. Sigh.

Survivor night at the Bats

Last night the American Heart Association had survivor night at the Bats baseball game. Evan and his buddies were invited to attend and one of our little guys got to throw the 1st pitch and another got to run the bases with the mascot. It was fun and didn't rain too much.
I love the picture they got of Evan laughing!
Please say a prayer for the appointment we have this Thur. with Evan's cardio.

Kosair Night at the Bats game

Thought this picture too cute not to share! This is Evan and his 2 heart buddies at the Bat's game this past Sat. night. It was Kosair Childrens Hospital night and the boys were invited as guests. I as a Mommy am so thankful for these two boys and the bond Evan shares with them. I think it is awesome that they have each other. The Mommy's of these boys are not only 2 of my best friends but a support system that I depend on and appreciate. We Love you guys!

Fun weekend w/ friends

We have been busy, keeping everyday special ; )
We had a Mommy's night with my girlfriends and our boys at the Bats baseball game. I'm not sure how much they were into the game but, they loved the cotton candy. We had a cookout at a friends yesterday - check out the crazy fun slide pool he has! We had a great time - as we always do with our friends. The boys were so funny. They kept doing tricks on the slides and would ask each other, "was that cool?" Evan's team made the tournament for baseball so we have a couple more weeks of that to go. He starts swimming lessons tonight so we will be busy with that the next 5 weeks. Evan got invited to VBS with a friend at their school this week. He was a little anxious to go since he had never been before. I keep waiting for a call saying he is upset but, so far so good. Next week is our VBS. He is going to be worn out! Next Thur. is our follow up with the cardio so we are anxiously awaiting that. Say a prayer! Thanks for checking in and hope all of you are well and enjoying the summer!

Pitiful

Wow... I sounded pretty pitiful last week, didn't I? I know things could be worse and I know that God is in control. My sad mood is more that of a Mommy who hurts for what he has been through and has yet to go through. Also I'm sad that Evan completely understands and asks questions and cries. When Evan was little and we received news like this we could go in another room and cry and pick ourselves up and put on a smile for him. Now he understands and is crying and you can't leave him to grieve over the news yourself because he needs to let it out too. As Sophia's parents reminded me - this is his heart condition. Although I grieve at what he has to endure I have to help him learn how to emotionally deal with the issues that go along with his CHD.
I did call the cardio on Fri. to clarify some of the information. He said that Evan's pressures had doubled in 3 months. That he believes this is due to a huge growth spurt since his surgery. He said that they hope this doesn't happen right after a homograft but there is no way to prevent it. He has gained 10 lbs. and 2 inches in height since his surgery. His said the narrowing isn't in the homograft but lower at where it connected. He said he is unsure if it can be stented or not but the only way to tell is to cath him. He said that a month would tell us if it was a growth spurt and is going to level off or if there is another issue and the pressure will continue to get higher. I asked what would happen if they couldn't stent it and he said another surgery. I like to know as much as possible and am so thankful for a Dr. that is willing to be available to answer this Mommy's questions.

Evan has seemed to be over being upset about the news and asked us to "make things special." I believe he means to move on and we agree that we need to. What we learned last Thur. doesn't change the fact that Evan is doing wonderful and we should stop wasting time crying and worrying. We cried and talked whenever he wanted to although after Fri. he seemed much less upset. We had a wonderful long weekend and made the simple things "special."

Upsetting Cardio Visit

Yesterday was a hard day. Evan had a cardio visit that honestly sent me in disbelief shock. Things have gone so well since his surgery that I never dreamed we would get anything but outstanding results from this visit. I even was brave and let hubby continue working rather than going with me. I'm not sure I can ever do that again. After the echo Dr. M didn't say his usual, "Good job buddy, you look great." I asked if everything was okay and he said he needed to look at some numbers. My eyes instantly filled with tears that I choked back. Dr. M said the pressure in his left pulmonary artery has doubled since our last visit 3 months ago. From 30-15 to 50-30. He asked me to not go there, to not worry. That we would come back in a month and look at everything then and discuss our options. I asked why. He said maybe Evan's big growth spurt has caused it to narrow again, he didn't know for sure. Said to wait until next month. I asked what if next month it looks worse or still bad. He said we will go to the cath. lab and try to stent it. I left with my mouth open and tears. Evan knew exactly what he was talking about and just told him, "but, I want to go to Disney World!" Dr. M asked when that was and I told him we were trying to get it together for October. He said that things would be figured out by then. Oh... I DO NOT want to discuss options... I DO NOT want to wait a month. I'm upset and am sure I will get over the news and move on this roller coaster ride with a smile on my face and nothing but LOVE for my little Braveheart but today, today I feel very down with this news.
Pray for Evan.