Hello Friends & Family!
CHD week is over but it was another great one!
I have been so busy and really loving it, between spreading awareness, taking baked goodies to PCICU at Dell Children’s, CHF Texas Chapter debut event,planning the Congenital Heart Walk and meetings for days I can’t help but sit back and feel so blessed.
New Living Translation (NLT)
92 If your instructions hadn’t sustained me with joy,
I would have died in my misery.
That verse is from my current Bible Study and it has really resonated in me and how and why I do what I do for CHD awareness, funding and advocacy.
CHFTX hosted our first event on February 13th and I am please to say with the help of THE MOST AMAZING board of directors and some terrific donors, vendors and guests it was a success. We will have pics soon
If you would like to support Trevor’s Allstars in our upcoming walk we are taking team members and donations HERE.
Does it ever get easier? Am I too sensitive? Will I ever be able to talk about Trevor with out crying?
Maybe not, but that is how God made me and he choose me to be Trevor’s mom. So tears and all…here I am.
CHD week is hard for me, I reminisce about everything we’ve been through, I remember those children we, the heart community, have lost. I relive those moments that no mother should ever have to go through.
CHD I HATE YOU! There I said it. I needed to be said.
In honor of CHD week this post is dedicated to EVERY.SINGLE.HEART.HERO and their families, it’s so difficult to be a Heart Mom or Dad or Sibling or Grandparent or Aunt or Uncle or Friend. Each of us is affected and have the responsibility to spread awareness. Go now…educate someone and let them be part of the change in the CHD community.
I am a
Heart Hugs <3
Today kicks off the month long awareness campaign that will educate and answer questions about congenital heart defects. You will be able to find a plethora of information on social media and hopefully in your own community.
Let’s start with some facts:
1 in 100 babies are born with a congenital heart defect (CHD).
Congenital Heart Defect means an abnormality in the heart that is present at birth.
Trevor is 5 in a half now and for the first time ever, he had a check up and the Doctor didn’t want/need an echo-cardiogram! I call this a huge victory. Trevor is very stable and doing well. Thank God for this!
Trevor is loving kindergarten, learning lots and just exploding socially, not that he needed help the girls (already) love him *sigh*
In February Trevor was having some severe chest pain and after a couple different appointments and an ER visit a cat scan was ordered. Everything showed “no reason” for the pain and actually showed Trevor’s heart was doing just fine. We treated the symtoms and it eventually went away.
In May Trevor had his 5 year well visit and he had grown nearly 1.5 inches since October! Voila! growing that much with scar tissue in the chest wall =pain! We are so glad to have worked that out.
We just had a cardiology appt with Dr. Shaffer and Trevor is still doing very well and we decided not to do a heart cath right now since his blood flow in the LPA is only slightly restricted and we would likely cath next summer. YAY! I will admit I was concerned about having “new” doctors doing procedures on him. It’s inevitable but at least it’s been pushed back
We are enjoying out summer, hope you are too!
Now that we are in Texas we are joining the Central Texas heart walk and can’t wait to walk on Saturday with out miracle and everyone in the Austin area.
We are gratefully taking donations for Team: Trevor’s Allstars if you are able to make a tax deductible donation go here: http://congenitalheartwalk.kintera.org/faf/donorReg/donorPledge.asp?ievent=1012214&lis=0&kntae1012214=2E5F429DB47A4F3191490DC7ABE74314
Thank you for all of your prayers, support and love over the years! We are making a difference
Yesterday was a big day for Trevor (and Mommy). Trevor is signed up for kindergarten! Sure he wont start until August but I was overwhelmed with emotion that I didn’t know I would have. Sure sending your first to school is hard, but sending your last baby to school is super hard. I could not help but feel so blessed and down right lucky that my “heart kid” is almost 5 years old, signed up for school, writing his name, swimming, trying to ride his bike and being a “normal” kid.
When Trevor was diagnosed with Truncus Arteriosus May 31, 2007 I was not sure he’d live through his first surgery and now he is a happy, sassy, funny, loving and most of all brave lil guy going to kinder! Thank you God for Trevor’s precious life <3
Here we are at the end of CHD Awareness Week and though I don’t feel like I did as much as I “usually” do to spread awareness, I had my own precious heart hero to tend to. Trevor has been having chest pain for a while on and off, but it seems to be getting worse. So since he was really complaining and upset we took him to the ER at Dell Children’s on Sunday. Everything checked out ok and we went home. We got to see snow when we left the hospital. The boys LOVED that. On Monday Dr. Shaffer, his cardiologist, wanted to see Trevor so we re-did the EKG, Echo and he talked with Trevor for quite a while about his pain. He was a champ! He did such a good job answering all the questions Dr. S decided we should to a cat scan, to get a look at everything much closer and clearer than the echo. Trevor was amazing! He was scared but was SO brave. The staff at DCMC have been wonderful. Good news is that there is nothing urgent or suspicious with Trevor’s heart, THANK YOU GOD! However, he will need his stent ballooned open this summer. Thank you for all the prayers and please keep them coming. I hate to see my baby in pain. :*(
Have a wonderful Valentine’s Day!
Zate and I are so excited and just THRILLED that our “heart baby” can play soccer. He may not be very good ;o) but that’s not the point! Here are some pics of day one. Thankfully at this age he is still able to play and do anything he wants since he will self limit, I hope he is able to play and do EVERYTHING he ever wants to.