So far, so good

Well, we have made it 13 days being at home. Brynlyn has already broken her own record. She is doing well. This week we were at the pulmonologist's office. This appt is normally a 2 hour appt because Dr. Stewart loves having her "Brynlyn time." What is so sweet is watching how much Brynlyn adores Dr. Stewart AKA Dr. Tink (because she's just like Tinker Bell.) Anyway, she thinks Bryn is doing great and thriving being at home. Her pneumonia is beginning to clear up with help from antibiotics and breathing treatments.

We added another DR to Brynlyn's regimen. "Dr. Mary" Serrantonio is her pediatric endocrinologist. She is so wonderful and we love her already. Come to find out, that Dr. Mary also treats our cousin Tami and Mark Millett's daughter, Heidi. Heidi is such a trooper and is holding her own against diabetes. Here's a shout out to the awesome Millett family. I love that we share Dr. Mary! It's a family thing now.

We spent 2 hours in her office this week while she was getting to know Brynlyn. She is treating Bryn for hypoparathyroidism. DEFN: Hypoparathyroidism is the state of decreased secretion or activity of parathyroid hormone (PTH). This leads to decreased blood levels of calcium (hypocalcemia) and increased levels of blood phosphorus (hyperphosphatemia). Symptoms can range from quite mild (tingling in the hands, fingers, and around the mouth) to more severe forms of muscle cramps leading all the way to tetany (severe muscle cramping of the entire body), and convulsions (this is very rare!). For her treatment, she is on calcium supplements and vitamin D supplements, for life.

Also, we increased her feeds because she's just not gaining weight. She's holding her own right now and not losing weight. But we've got to get some meat on her bones before surgery. So she is now eating via g-tube 100 cc's of Pregestimil formula every three hours. (60 cc's = 2 oz) The reason she is on Pregestimil is because it is already digested food. Her body doesn't need to do any work digesting the food, only absorbing the nutrients. She needs to preserve her energy for growing. And they say Brynlyn has very little reserves, so she gets tired and worn out easily. So the more work we can do for her, the better. I suggested to her DR that we could melt a couple of Snickers bars each day and feed them through her tube. Atleast, that's what helped me put on some pounds, I'm sure it would help her gain weight too! ha ha

She is still on her medications, that now total 14. The chart I created to manage the doses is lifesaving and would be so confusing without it.

She is getting so good at holding her head up. It's amazing how I took little developmental stages for granted with my previous children. Now I realize how big this milestone is for her and how hard this is for her to do. She's such a trooper.

And she's sucking on her fist and loving her pacifier. These are such huge steps to help her oral aversion. She is very alert and active and is a typical baby in that she loves being held and fusses when she's put down. Can anyone else relate?

Well that's the latest. I will be sure to be a better blogger and keep the updates coming. Thanks for your interest and concern for us and our sweet baby. We appreciate all of the love and support. Take care and have a safe weekend!