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Luke Teat

Luke Teat

At 3 days old we found out Luke had PKU, phenylketonuria. We knew he was special since birth as his apgars were dangerously low, he was put on a heart monitor and he had myoclonic jerks that we have never seen before.
Its now the beginning of 2017 and Luke has had over 100 fractures due to his ehlers danlos syndrome, he was dx with Chiari, osteoporosis and asthma. He has had a very long ten years with many rough roads but he is the happiest child I have ever known. we are so lucky God chose us to be his family.

My Journal

Beach day

hi everyone!! Today we went to the beach for a few hours and had a great time. Nothing like sand and sun to lift spirits!! last week we went to neuro met our new dr. He was great!! He was totally on board for more testing before surgery!! Of course the central apnea increased episodes has me a bit alarmed and we go to pulmonologist in a few weeks. Neuro said if pulmo thinks it’s chiari related that’s another negative strike. We are also going to have a total Chiari MRI workup at Hopkins at not at our local mri facility. He said Hopkins has new protocol and we are going to check for syrinx (to see if that’s strike two). Lastly because of the increased choking episodes we are going to have a swallow study. He said that Luke having Ehlers Danlos puts him in another category for healing problems. I…