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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. Luke has had over 100 fractures due to his Ehlers Danlos syndrome, he was dx with Chiari, osteoporosis, asthma and central/obstructive sleep apnea.Unfortunately he also suffers from OCD and anxiety. He has had 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

crazy week but awesome happenings

Luke has had quite the few weeks. The concussion has bought him a lot of time out of school but will be returning tomorrow. Lots of prayers he copes well. His anxiety and tiredness get the best of him at times. His PKU numbers were finally after months in a controlled range with an increase of his Kuvan.  He seems to be tolerating it well. I have reached out to his REM caseworker as we have not had to use his chair in several months but when we needed it last week he barely fits!! Time to get a new one. He has grown so fast. Hopkins is suggesting Mt Washington for a weight specialist which will do after we find out neuro plans.  Next sleep study for tritation is scheduled for three weeks but have us on a wait list so they can get us in sooner.Big brother Michael and…