Maya doing great - followup Thursday in Philly

Before you read on, check out this video link from MSNBC - this is a little boy that went through the worst case scenario that we were preparing for with Maya, and the team at Texas Children's Medical Center did their first fetal open CCAM surgery - way to go doctors! We can now add Texas Children's Hospital to the list of CCAM fetal surgery centers.

http://video.msn.com/v/us/msnbc.htm?g=83EF17D0-4EE1-4D28-9F76-46F8C135C82D&f=00&fg=copy

Maya is doing great! She was 15 lbs. 5 oz at her latest doctor's visit, and solidly (pun intended) off the charts at the 98th percentile for weight, head circumference and length. The "chart" stops at 95%. She still has bouts of pain from acid reflux even being on the max dose of Zantac for her size, and gas is another cause of discomfort for her, but it is getting to be a problem less often. She is alert more, and has started day care at the same place as Brianna. Brianna is a very protective and proud big sister. We were at a restaurant on Sunday and Maya started crying quite a bit. Victoria took her outside to console her and told me to stay at the table with Brianna. Brianna was very concerned with Maya and wanted to go with Victoria outside - I told her to stay with me and tried to catch her. She screamed in a guttural tone, "Let go of me!" (which I did immediately, having never heard that tone before) and ran out to check on Maya.

Brianna is also becoming very motherly in another way - she is concerned about my bonding time with Maya. She always asks me as soon as I come home, "Daddy, Maya's eyes are open, do you want to hold her?" This may be a reaction to Maya being with Victoria so much of the time due to breast feeding, but it still is cute seeing Brianna try to "balance out" the family.

Brianna is now able to pedal her training-wheeled bicycle very well by herself. She rode close to a mile last night on a "rails-to-trails" down the road from us. Her only issues are being able to use her brake properly (she keeps putting her feet down to stop), and consistently looking ahead where she is going. Once she gets those down pat, we will wean from the training wheels. Victoria and I have two new bikes and a trailer for the bikes, so we ride Maya behind us and get great exercise whenever possible. We are now big fans of the multi-use trails.

Brianna has also mastered driving her electric jeep and has learned to operate her LeapFrog portable video game system. She is advancing intellectually in leaps and bounds. She still has volatile emotional swings that cause fits that make her seem like the worst brat on Earth, but can bounce back quickly to be as sweet as can be. We have learned that sugar is bad, and chocolate is much worse for making her hyper. Her attention span is also short but intense, and changes constantly. Once she states she is done with an activity, getting her to finish with it is almost impossible (puzzle, game, etc.) I am trying to get her to follow through with tasks, because I see my patterns in her, and one of the things that has held me back the most in life is my lack of attention to detail and follow-thru.

Brianna will be coming with us to Philadelphia Thursday and is very excited to do so.

More testing...

Maya is still at the Connecticut Children's Medical Center (CCMC) in Hartford undergoing observation and tests. Victoria has spent 2 nights there and I have spent one keeping a 24/7 vigil with Maya. Deb (Victoria's Mom) has been a great help by caring for Brianna at home. Her first 2 nights there were bad, with some uncontrollable crying spells with back arching and consequent low oxygenation and/or turning blue. Also a few "blue spells" for no reason with good oxygenation. A main culprit is believed to be GERD or acid reflux. They started her on a minimal dose of Zantac with little/no effect which our primary pediatrician (Dr. Brown) prompty increased to the max dose. This appears to be working darn well, as she has had no crying spells of note since then.

To rule out other issues, Avon Pediatrics doctors Brown and Perks have ordered consultations by a cardiologist and a pulmonologist, as well as a sleep study and a barium swallow study. All visits/tests have been done with the exception of the barium study, to be done at 3 PM today. We hope Brianna will swallow the barium, as we are strongly opposed to the alternative of snaking a feeding tube down her nose to force it in.

The cardiologist sees no indications of issues arising from her PDA or PFO, and thinks they will close on their own, and wants us to set a follow-up appointment for 3 months from now. The pulmonologist thinks the GERD is responsible for closing off her airway intermittently, and has ordered a lengthening of the originally prescribed barium study by 20 minutes (why? I don't know). The sleep study results are unknown at this point as well. We are sure that when the results are in Avon Pediatrics will call us ASAP, as they have been doing all along.

GERD is not unexpected in her, as Brianna had it pretty bad for a few years and was also on max-dose Zantac. It eventually resolved on its own.

So hopefully Maya will be home later tonight or tomorrow at the latest.

-Chris

Unexpected possible turn for the worse

We made it safely home Sunday night and enjoyed some time with Maya seeming near-normal on Monday. Today (Tuesday, May 1) however, Maya has some perceived difficulty breathing and some skin-tone changes on one side of her body, as well as feeding changes. On the advice of Dr. Flake (the surgeon from Philadelphia), Maya is going into the CT Children's Medical Center to get a chest X-ray and to be put on an oxygen saturation monitor. Victoria has brought her there and I will be joining her after work. We hope there is nothing serious going on, but if so, we will aggressively seek the best treatment for her. I will update when I know more.

-Chris