Adrian Boehm

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Let me start by giving you a brief look at my family. My name is Katy Boehm. My husband is Joseph. We have a 4 year old named Benjamin, and our little Rubinstein Taybi angel is Adrian; he's 2.  We live in Billings, MT.

Adrian Carl Boehm was born five weeks prematurely on August 20, 1998. It  was a difficult pregnancy and an even harder delivery. Adrian weighed 5 lbs.  13 oz, and immediately after birth was admitted to the NICU where he stayed  for 10 days due to feeding difficulties. When Adrian was born we could not believe our eyes, he had so much hair. We knew something was different about Adrian right away. He looked like a doll! He was born with broad, very angulated thumbs, broad almost double big toes, and an angel kiss on his forehead. Adrian was diagnosed with Rubinstein Taybi Syndrome  by a geneticist one month after he was born.

Adrian has  had chronic ear infections since birth. He has had 2 sets of ear tubes.  However, since June of 2000 when he had his tonsils and adenoids removed he  has been ear infection free. Adrian had a feeding tube placed at 5 months  old; and it had since been removed.  Adrian has also has a Nyssen wrap to  keep him from refluxing, surgery for undescended testicles, and his thumbs have been corrected.  Adrian is regularly checked due to a kidney blockage he was born with.  Adrian also has an enlarged heart chamber and a small hole in his heart which are checked regularly.  Adrian has nystagmus in his eyes and has to wear glasses due to extreme  farsightedness.

At 27 months old Adrian weighs 22 lbs.   His progress has been very slow until recently. Since June 2000 Adrian has  started crawling, getting up on his knees, pulling up to stand, and has  learned how to get off a coach or chair by himself. He can also get into and  out of sitting by himself, and has learned how to go up stairs. Adrian is  pretty much nonverbal. He does babble a lot and can say mama, dada, and is  working on ball. Adrian is in speech and physical therapy and seems to enjoy  it. Adrian has also just recently finally gotten some  teeth!

While Adrian can be strong willed and get mad when  he doesn't get what he wants, he is a pure joy. Adrian touches the hearts of  all those he comes in contact with. His smile is radiant and his laughter  infectious. Through surgeries and hours of therapy Adrian just keeps  smiling, and he keeps us smiling right along with him. Adrian adores his big  brother Benjamin and wants to be with him constantly. Adrian loves to be  held and rocked, but his favorite are hugs. He would hug you all day if you  let him. He is an amazing ray of sunshine in a crazy world. He has taught us  to slow down and enjoy life whatever comes our way.

While things  aren't always easy (constant doctors appointments, therapy, and a lot of  uncertainties) we have truly been blessed.  Adrian is loved and cherished by  his grandparents, aunts, uncles, great grandmothers, his brother, and by Joe  and me.

Katy Boehm
Billings, Montana

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