Our Story Part 3 – Present day

Now that I’ve caught us up, here is where we are as I write this today, July 2nd 2012. Reese has a big month this month, she turns one years old! She also will most likely have surgery on her heart sometime this month. She has an abnormally large hole in her heart and it is causing extra blood to be pumped into her lungs. Her lungs are stiff and she has trouble staying at a normal oxygen level. So we must keep her on oxygen most of the time and it of course limits what she and we can do.
So next Tuesday, July 10th, we take Reese to Kosair’s for a heart catheter procedure. They will look more closely at her heart and see how the blood is pumping through all of her chambers. Then we’ll sit down with the doctors and decide when she will have this surgery to close the hole and what her longterm prognoses for her heart and lungs will be. Reese is going to have a busy time at the hospital the next month.

A couple of weeks ago we visited her geneticist team. Honestly, they were of no help or comfort considering everything they told us we had already read. When they came into see her, they took her picture and asked if they could do a research paper on her. A parent dreams of their child succeeding in life and making the newspaper, winning an award, being successful in whatever they do. No parent should have to give permission for their child to be written about in a medical journal. When they asked us, Elizabeth and I just looked at each other. They left the room and we discussed it and decided that if helps another family who discovers this disorder, then it’s worth it.

Our geneticist told us that they won’t see us for another year. Once this heart situation is fixed, we’ll most likely get Reese a sleep study because most children with this syndrome have sleep apnea and need some type of help breathing at night. Once all of this is done, we just keep focusing on her development and watch her respiratory health. Pneumonia is the biggest worry for us this coming winter and we’ll have to keep a close eye on her vitals to avoid anymore visits to Kosair.

So that pretty much catches us up with our precious Reese McClain. With everything I’ve written these last few posts, I might not have painted the best picture of our situation. It’s not easy but I do want to make one thing clear. My wife and I are bible believing Christians and believe Reese is a gift from God. Everyone is made in God’s image and while we in our society don’t consider her normal, she is normal to God. He has a plan for all of us and his story is bigger than our own. Reese is part of that story and he has in trusted us with his daughter. It’s not easy to turn something like this over to God, especially for a control freak like me. Yet with each new setback, medicine, test, or worry, I pray to turn it all over to him because giving glory to him is all he wants.

Thank you for reading our story and we appreciate everyone’s kind thoughts and prayers. Keep an eye out in this blog as I post more updates, news, pictures, and maybe even some fun randomness. God Bless.

5 thoughts on “Our Story Part 3 – Present day

  1. Thank you so much for sharing. You and Reese will be in my prayers and I believe your love and faith will carry you through this difficult journey. You have a strong, happy, beautiful child who is lucky to have such loving and caring parents as you to nurture her and help her grow.

  2. Reese is so blessed to have you for her parents. My love goes out to each of you. Reese is so very precious, and beautiful. Kyle, Laura and baby Reese (((((HUGS))))) and prayers for you. Thank you for sharing your life with us. You are truly an inspiration. THANK YOU.

  3. My grandson was diagnosed with the xq28 duplication recently. He will be 3 in October and we just found a diagnosis. We had his checked for downs syndrome, deafness, everything and anything. It is hard to not know what to expect.

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