We were very grateful that a research study we agreed to do - "Prenatal exposure to environmental contaminants and Neurobehavioural outcomes in newborns with congential heart disease" paid for our flight and hotel stay. We were able to squeeze in a visit with his cardiologist and with numerous family members for the 5 days we were there. The girls stayed home with their Nonna.
Overall, M is looking good. His cardiologist was pleased with the way his heart looks and we will plan on having his next surgery sometime in the next 12 months if everything holds steady. So, hopefully we can push it to summer 2015 - I would like to do it when the girls are out of school and everyone is healthy. Fall and winter were brutal this year for colds around here and M absolutely has to be healthy going into this surgery. Plus he will recover better after surgery if his sisters can be there -getting him to walk, laugh, providing some normalcy - or so it seems from the other children we have followed who have had the 3rd surgery. Could be he will need the surgery sooner - he is not growing well and is so tired all the time. Playing for a few minutes before needing to lay his head down and rest. We will keep everyone posted.
Part of the research study is a meeting with the genetics team. They reviewed all the testing he has had already -still saying no noonans, no charge syndrome. And they do a physical exam - they remarked on how beautiful he is :) One new study going on (somewhere in Europe) is looking at certain genes that may cause heart defects. They will be sending his DNA so it can be added to the research and because it is a study we won't have to pay the $17,000 price tag for the test. YIKES! Its scary to think about the scrutiny his genes are under - I am positive there are strange variations in everyone's DNA on the level they look. It is all so new, so unknown. I struggle with the idea that maybe looking at things this closely this soon in the science of genetics may hurt Macsen. But it might help too - what if they find a gene that caused his heart defect? This puts the idea of "protecting your children" on a whole other level - protecting their DNA, their blueprints that will lay out for all that can understand them the essence of my child.
He had an audiology test - he failed it. The audiologist said his test results are consistent w/ fluid in his ears and he needs to be tested here in Alabama. We are scheduled the first week of May. I know he hears well - he has favorite songs he bops too, ones he screams during until you change them, he hates Radio DJs and will cry until you change the station to music. He hears birds singing and makes the sign for birds when he hears them. He hears helicopters fly overhead while we are driving in the car and makes his sign for helicopter. He still does not talk though. He has recently started saying "MAmamama" again and does say approximations of "on, off, Elmo, apple, Dada, bath." Today I was singing Britney Spears song "Ooh la la" and he was saying "ooh la la" - funny boy. I'll try to get it on video.
He loved the developmental testing - asking/signing "more" for more tasks to figure out. How to get in a 1 sided box, finding hidden objects, stacking blocks, pointing to body parts, etc. He scored in the average range which is fantastic - lack of oxygen not slowing his noodle down. In fact they said he was very organized, never panicked or shut down when approaching a problem and just calmly figured it out. When given a peg board and little pegs he filled in the holes from the left to the right - in order. They said he could only stack 4 blocks - stupid tiny slippery blocks, seated at a table already chest high- but at home he has stacked more than 10 high of the chunkier wooden blocks - higher than he is tall. And even though he wasn't walking at the time of the test they said he had "quality movements." All good things.Official findings were he "was delayed in his expressive speech and gross motor skills" but in all other developmental domains he is at an age appropriate level. Awesome sauce!
My least favorite part of the whole thing was his examination by a pediatrician. She wanted me to start him on soy formula - said my milk was not enough for him and he needed supplementation. I am fine with supplementing - in fact I have bought several options he refuses to drink- but refuse to give my son soy. I have researched the estrogenic properties of soy - how some male babies lactate while on soy formula, how it has been proven to shrink testes- not to mention the recent research linking unfermented soy and cancer. When I voiced my concerns to her she rolled her eyes and said (wait for it) -"That doesn't happen ALL the time. Very rarely." I'm sorry - really? Rarely? Not good enough. Then she recommended all the Pediasure type drinks that are 56% corn syrup + soy - GMO crap. Nope. I know lots of families use these drinks and they have worked for their little ones - helped them put on weight and thrive. But I just don't want to do this to M. My healthy girls don't even eat corn syrup - it makes them crazy - and to put my guy w/ an elevated heart rate on hummingbird food just seems like a bad idea. But I am quickly running out of breastmilk and am desperately trying to find something he will drink that will be help him grow. I have had some luck adding organic whipping cream to his night bottles (when I add it to his day bottles he doesn't drink as much.) So my next step will be trying to make my own formula I think. M still won't eat more than a nibble here and there and totaly depends on breast milk for his calories. We see speech for an evaluation in 2 weeks so we will see what they recommend. After that I may have to enroll him in an intensive feeding therapy program which would probably entail us relocating somewhere near a big center temporarily. Or maybe when he really starts walking, really has enough strength to maneuver around he will have enough strength to chew and swallow... just a theory I have. When my girls started walking they started eating. Granted they were walking at 10/11 months.
So more evaluations, more testing in his future :( He needs to start eating. His growth has really slowed, he definitely isn't taking enough calories. I don't want to do a tube and will exhaust all other options before we go there. CHOP also recommended we see an endocrinologist to see if he has enough growth hormones though they don't recommend growth hormone supplementation for heart kids. Seems there may be a link between it and Protein losing entropy (http://www.tchin.org/resource_room/c_art_04.htm) which can happen after the Fontan and can be fatal.
He has been sick for several weeks now with congestion, coughing, excessive amounts of phlegnm and I think he may finally be shaking it. The pollen has mostly passed and I think it was aggravating him. If he's not mostly better by tomorrow though we will need to have him checked out by his pediatrician again just to rule out any infections and to ease my mind that he is ok.
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| Dr.R, audiology test, gazing at Daddy on the plane, and his favorite thing in Philly? Watching cars and trucks 7 stories below our hotel room |
