Natalie doing much better today. She still has a nasty cough, but seems to have more of her personality back.
I am involved in a group in Amarillo called, High Plains Mended Little Hearts (HPMLH). HPMLH is an organization nation-wide the provides awareness about congenital heart defects and support for families with a child with congenital heart defect. Jamie Synder runs the High Plains branch has been a great source of information for me. Her son, Kaston has tricuspid artesia and is now 8 years old. Kaston not only went to Children's for all of his operations, but has Dr. Zellers as his doctor as well. Jamie provided us with a blog sight today that is not only extremely helpful, but encouraging as well.
The sight is, Adventures of a Funky Heart. Steve, the writer of the blog is 44 years old and has tricuspid artesia.
I find it encouraging that Steve is still healthy and alive. I know that seems like a lot, but Steve is the longest live person right now with tricuspid artesia. I find it encouraging that he is doing so well and that by the time Natalie is 40, look at how much our medical field with increase in this area.
Steve posted the other day about the flu and colds. I have never thought of it, but it was nice to hear him explain what a cold feels like when he lays down. He said he feels like he is drowning, because of the pressure. Natalie is too young to tell us how she feels, but I have noticed there have been times this past week that she really wants to sit upright or lay on my chest versus down in her bed. I have never thought about how laying down might be making her feel worse.
Thank you all for the prayers and support this past week. Natalie goes back to the doctor tomorrow for another check up. I also talked to Dr. Zellers last night again. He feels my comfortable with us being in Dallas for Natalie getting tubes in her ears. We are in the process of setting up the appointment. I will keep everyone posted on that as we find more out.
"Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge Him, and he will make your paths straight"
Proverbs 3:5-6
Lib, darlin'.... I think of you and your precious family so often. You keep up your positivity; I believe in the power of positive thinking, positive action, positive prayer. Love and God Bless, darlin'.... xoxoxo mp
ReplyDeleteSo glad that you liked the post from Steve! He's a pretty wise and resourceful guy. It's great to see the perspective from another CHD "kid" like ours. Although he may not have an active body, he has an active mind and I've found that sometimes that is better!
ReplyDeleteHope you have a great week-end Libby!
Many Blessings,
Jamie Snyder
High Plains Mended Little Hearts
"Little Hearts Hold Big Hopes"