Wednesday, May 27, 2009


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."

Friday, May 22, 2009

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.

Saturday, May 09, 2009

Preschool Graduation

Evan's Preschool graduation was this past Thur. night. It was the cutest, sweetest thing. I surprised myself and didn't boohoo but, there were tears glistening in my eyes the whole time. We love Evan's little school and the people there. They are an amazing group and I feel very blessed that Evan has been able to spend the past 2 years there. I can't believe that this time is over. I can't believe my baby is going into Kindergarten next year. I hope my friend doesn't mind but, one of Evan's bff at school is also a heart friend. This little boy's Mom and I are very close. We were talking about the graduation and how bittersweet it is. She responded with, "I remember a day in the NICU and he was 5 days old and going into surgery and I wondered if he would ever feel the wind on his cheeks, ever feel the sunshine, ever have friends, ever go to school." It's so true... we are so happy they are experiencing these milestones and can't believe have fast the time has flown. Our amazing kiddos...
So it is goodbye Preschool and hello grade school. Enjoy the pictures below.

Preschool Graduation

Monday, May 04, 2009

My Little Star

Derby week is over but, it sure was FUN!!! Our girls day at Oaks was a blast, other than the walk back to the car at the end of the day, oiy. I love my girlfriends - what would I do without you guys? We don't get out much but when we do, we always have a such a blast.
I took Evan to the Pegasus Parade on Thur. evening and we had a great time. We went and found a front row seat and set our chairs up. After a little while we noticed that the seats on the road next to us were reserved by one of the local TV Stations. When it was time to start the parade an anchor from Wave3, Connie Leonard came over and was doing an interview with a man off to the side of us. During the interview Evan and his 2 BFF's were dancing and hopping around. After the interview she came up to them and asked if they would talk to her on the camera when it was time and they said they would. She took them over to the camera and did "Live at 5 at the Pegasus Parade" - she asked their names and if they were having fun. They said their names but when asked if they were having fun the didn't jump up and down but gave a small little "yeah." I tried to make a few phone calls once she asked if they could be on but I only reached a few and didn't get it taped. I did get pictures though!