Yesterday was a very long long day. We were at Children's Hospital in Denver by 9:30. We got right in to the doctor on the metabolics floor. Braedon has gained weight!! So that was wonderful news! We began the forever-long process of the family history, his history, his current state, our concerns....etc, etc, etc.
The doctor came in at 11 and observed him for an hour or more. He watched him run, talk, play with a ball, walk, retrieve things and how he reacted to being picked up and stretched. After the exam he rattled off about 6 codes to the other doctor of things to test for. One I know was a cholesterol test. He is concerned with whether Braedon's cholesterol is high enough. He said, most people think of it as a bad thing but it's even worse to not have enough of it.
The doctor was also concerned with Braedon's muscle strength. He runs like a 13 month old, not a 20month old. His hips extend too far (mine do too but I attributed that to dance and my joints have always hyperextended) and the muscle that runs under his armpit down his side does not flex as you pick him up. Rather, he goes somewhat limp and slides down through your arms. You have to have a tight grip on him when you pick him up. I always thought it was him being silly or throwing a fit but the doctor said he can feel that the muscles don't retract at all there. So they are doing some testing for that.
The other big thing they touched on briefly was autism. While his social skills are wonderful and he is totally outgoing, there are some behavioral patterns that concerned the doctor (and others before him) to watch him closely over the next 6 months to see how he develops. His speech is not as good as it should be, his GI problems can go hand in hand with autism, so can seizures. While he hasn't been ruled to have seizures yet, he has had episodes of staring off and not responding to sounds, objects, voices calling him. The doctor said if he is, it will most likely be on the lighter side.
Some of the other concerns are his mood swings and how quickly they change and explode over nothing. They want to monitor those as well to see if it is a personality trait (yay for me!) or something more.
I did ask before we left to draw labs, if there was a chance these health conditions could have been caused in utero. I have frequently worried and blamed myself for his health problems. I had a stomach infection when I got pregnant and before I knew I was carrying this beautiful baby boy I began the medication packs to clean it all up. The meds were not safe meds for pregnancy. Then you add on the blood thinner injections and the reflux medication and I have beat myself up over what I could have done to him before he was ever born. It is a horrible feeling. The doctor assured me that there was nothing I could have done to create these problems, they are genetic...whatever he is dealing with. I need not worry about how I damaged my child's health and future and well being before he even had a chance to breathe his first breath.
That gives me a sense of peace (a small one but I will take it). After four miscarriages, you begin to wonder what you hae done wrong and the next time vow to be perfect. You strive in every fasion to be perfect, eat perfectly, sleep/drink/exercise perfectly. Nothing is out of place and at the frist sign of something wrong you rush straight to the doctor because the thought of losing another precious child is more than you can bare. That was/is me. I stay awake...like tonight, wondering what "we" are missing in his diagnosis. I am praying, pleading with God to heal him and I believe He will and is doing it right now in front of me.
Please pray with me, my husband and my family that God would allow these tests to come back clean, that the IGE that was way high would come back normal and the doctors would scratch their heads and chalk him up to a medical mystery. Thank you thus far for all the prayers, advice and well wishes. We appreciate them so much!
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