Grandma Dayle, Aunt Nicole, Uncle Eiko, Savannah and Jake came to New Hartford to go trick-or-treating with Brianna and Maya. Brianna was a bride with Maya as her flower girl (very creative Mommy), and Savannah was a fairy and Jake was a monkey. After visiting two of our neighbors we rendezvoused with the rest at the New Hartford Firehouse, where they have open festivities for the kids each year.
After that we trick-or-treated up Cottage Street. The kids were very polite and Maya was even trying to say "thank you" to people.
Maya just returned from a visit in which her vocal chords were visually checked by a scope. The specialist at CCMC declared them to be back to normal! Anyone who has heard her screeches, screams or developmental babbling in the past few weeks could have told you that was likely to be the case. As for whether or not she can return to swallowing liquids, that apparently is something that cannot be determined conclusively by a scope. There is an element of "learning" there that she may or may not still know. She will need to go for a swallow study as soon as they can fit her in for one to determine if her body can properly swallow liquids without choking or silently "aspirating" them, i.e. allowing them into the lungs. Once she is given the A-OK for liquids, the PEG tube will be sceduled for removal, another operation in which she is sedated.
Regarding her other parts, her lungs, sinuses and ears have all been free of infection in the past 3 weeks or so as well. Yes, it is true, I have had her on an even stronger version of the garlic/ginger tea during this period due to her having pneumonia in the lead-up time to her PEG tub placement/bronchoscopy at the beginning of the month.
The results of the bronchoscopy/endoscopy (needed to place the stomach port properly) have been generally good, which is a mixed relief for us as we are still exploring why she has too many lung/sinus infections. Bost procedures showed no evidence of GERD (acid reflux), which many doctors have looked to blame and has never been proven. The endoscopy showed nothing out of the norm in the esophagus or stomach, and the bronchoscopy showed slight (minimal to mild) floppiness of some of the larger bronchial passages, but not enoungh to be of any signifigance. Also, Maya is now free of atalectisis which she had present since her PAPVR repair heart surgery in Boston on July 31. Her lungs looked very good and the sputum in there was very thin. Samples of it cultured came back free of bacteria, but with the presence of some 'macroscopic' (visible to the naked eye) particles of unknown signifigance. We are still piecing together some information that may lead to an answer that these particles may be a piece of, stay tuned.
On the negative side, Maya's PEG site has been infected since it was placed, leading to pain for her and worry for us. The wound was just categorized as "granulation tissue" and we are now treating it with steroid cream, as antibiotics do nothing for granulomas, as they are part of your own body overreacting and attacking some of its own cells. Don't look if squimish... She has also been physically more active. At times she is a riot, at other times a little bully. She pushes Brianna a lot, sometimes just to see her reation, other times because Brianna is intruding on her personal space or competing for attention (like fighting over sitting on my lap). And Brianna then loves to complain about it to us. Sibling rivalry, what a joy. On the good side, there are times when they play excellently togather and are silly and make each other laugh like crazy. That is awesome to hear after all that Maya has been through.
Well our heartfelt thanks and love go out to everyone who has been praying, meditating, directing healing energy, thinking positive thoughts, etc. for Maya. They definately have had strong effects. Don't stop just yet, as there are a few other issues that we have not divulged yet on this blog because we do not have anything other than a pattern of information without a confirmed diagnosis, but she still has some health issue or issue(s) left to resolve.
And to Abby - you are our inspiration. We all love you and pray for the best for you. Your suffering is unfair and your strength and maturity with what is happening in your body is amazing. There are no answers why that can make any sense now, but we pray for your suffering be less and your enjoyment of life to be more. You are so strong and smart and Brianna talks about you all of the time. Our hearts go out to you and your family and just know that there are many of us that would take your place if we could.
Just a dad who loves his girls and wants to keep sharing their lives with family, friends and others who might learn, be entertained or moved by their experiences.
