Since I posted about our "incident" yesterday (was it only yesterday??!!) I thought I better get some information on here about who she is, but first, I just have to share about this morning's breakfast.
Today's menu: scrambled eggs and toasted English muffins. She did NOT serve herself but did agree that the amount serve to her was "ok". (as in Mantha is this enough eggs? yes. Is this too much eggs? No.) During breakfast she made NO complaints and very proudly showed me her nearly empty plate. Now I don't care if she is a member of the clean plate club. Getting her to eat it all is NOT my goal. Teaching her to take responsibility for her actions and her choices, that's my goal. I was just tickled though that we had such a *pleasant* breakfast.
So who is this little girl? Mantha is 11 years, 6 months and 15 days old. She is a twin, the older one, and has an older sister and a younger sister. Her twin, the younger one, is "typically developing" and is a healthy 11 year old.
Mantha was born with Hypoplastic Left Heart Syndrome. It means that the left side of her heart did not develop properly. It's syndrome which means a collection of "defects". She was born with other congenital heart defects as well that are not usually associated with HLHS. She was also born with DiGeorge Syndrome. This is a genetic disorder affecting the 22 chromosome, 22q11.2 micro-deletion. Most of her "mini-diagnosis" stem from DiGeorge. But DiGeorge and HLHS is only 2/3 of the equation. Sometime in the womb, Mantha suffered a major stroke. It is believed that she had more than one. I believe she may have had one shortly after birth as well. At times it is hard to tell if the issues are due to the severe brain damage from the multiple strokes or if it is the "associated learning disorders" of DiGeorge.
We believe that Mantha is a miracle. If she'd had that stroke *after* birth, it most likely would have killed her. I am NOT a trained medical professional but even I could see that something was terribly wrong with her MRI. Because of her small size (she weighed 4lbs 5 1/2 oz at birth) and other medical issues we were not even sure she would survive her first open heart surgery. We were told she only had a 50% chance of living to age 5.
I'll share more details in installments that share the many procedures she's been through.
This is Mantha's story and the lessons we're learning as we look through her eyes. She has such an incredibly simple, sweet and wonderful way of looking at the world.
Tess,
ReplyDeleteI'm so glad to have found your blog, my son Ethan has just been officially diagnosed with DiGeorge but we suspected it for the last year. Which for us was also answers to many questions that haven't made sense for years!
I think we go through so much with what God has put on his plate with the diagnosis, but once again God has reminded me someone else has it so much worse, we have not had heart problems, and at this time he only has a heart murmur. He was born with a cleft lip and palate but they have not caused nearly as many problems. I will be keeping you all in my prayers and am now following your blog!