And the pendulum swings the other way...

Today Victoria was contacted back by a cardiologist with the Boston Children's Hospital. Victoria sent over all of the information regarding Maya in our possession to request a consultation, as well as to set up an appointment to get a sedated Pulmonary MRI to measure the Qp/Qs ratio (quantity of pulmonary blood flow to systemic blood flow expressed as a ratio). In addition, we are requesting a further procedure called a bronchoscopy be done at the same time on the advice of pulmonology in Hartford, as well as by Dr. Flake in Philadelphia, with the purpose of determining if Maya has any constriction or rigidity in her bronchi, or if her Anomalous Pulmonary Vein is causing pressure on her lung(s).

The Boston cardiologist looked at all of Maya's reports, and actually called Hartford and requested additional data that was apparently not in the reports we brought to Philadelphia nor which we have ourselves. That data shows some sort of preliminary Qp/Qs pressure data that was measured or calculated during her Hartford catheter procedure. The cardiologist says that the data points to a ratio anywhere from 1.4:1 to over 2:1, and that the flow through the Anomalous Vein is very high, just as we were first told in Hartford. She says based on what she sees, she agrees with Hartford on the need for Open-Heart Surgery. The data from the cardiac MRI will quantify the ratio more definitively. So now we are just waiting for Boston's Pulmonary staff to agree on a date/time they can work with cardiology while Maya is sedated and get both tests/procedures at once. It should be soon.

So how has Maya been otherwise? She is walking like a champ now, and is on a temporary respite from her nearly constant sinus/ear/respiratory infections. It may just be a coincidence but after exhausting every antibiotic given to her, I decided to go old school herbal on her, old wives' tale style. I made a decoction of 1 big pot of water into which I put:
-Many old onion skins
-Many old garlic skins and cloves gone soft
-dried spearmint
-dried raspberry leaves
-dried dandelion root
-Dried Stinging Nettle
-a good amount of local honey

I simmered that 2.5 gallon pot down to 1 3/4 gallons or so, then put it into containers and refrigerated it. We give Maya this tea in a sippy cup as often as she'll take it, and we add 1/2 packet of Splenda, as the honey was not enough to mask all of the nasty tastes. She drinks it quite well, and has been symptom free for nearly a week, at the height of allergy season - put that in your pipe and smoke it, nay saying doctors and your supporters! In all fairness we have added liquid Claritin to the liquid Zyrtec we were giving her before, as we also have done with Brianna, although of course picky Brianna won't touch the tea. Brianna is still having asthma attacks. Score a big endorsement for the common immune-system bolstering herbs, I say!

So Maya still doesn't say much, but she has said "Anna" for Brianna, "dog" or "dog-dog" for dogs, "da-da" both for me and for any motorcycle she sees, as well as for any item she does not know a name for. It could be like a "What's that?" for her. Ma, or "Ma-ma" is the term she uses both for Victoria and any food item she desires (Freud, what would you say here?), and of course she is great at pointing and grunting for anything she wants or wants you to turn your attention towards.

She also climbs now, almost anything your average 3 year-old would. She is a dare-devil and will climb small chairs and rock them until she tips them over. She emerges from the wreckage unfazed and tries another daring act. She loves riding in the bicycle trailer, although she now pushes against Brianna to assert her independence and desire for more space. She will take out her helmet and put it on, then hand me or Victoria our helmet(s) when she is outside and wants a ride. When inside she will get me my shoes to indicate her desire to go for a ride.

She also smooches now - big open-mouthed kisses. I have a great photo of her smooching Austin at Tyler's birthday party, but I cannot find my card reader, so cannot get the pics onto the computer today, sorry. I hope these 2-week old videos will suffice for now.