Turning 2

Today is Bekah's second birthday.  Each one is a special celebration because it means that she has survived and thrived another year, often defying death.  I want to share with you what we've learned about her both medically and as a person.  But first, some pictures.

Thirty-three hours of unmedicated labor, I though I was smiling when this picture was taken.

7lbs 2oz born 11:55am.

First birthday party

Today.

Last year we learned that Bekah does not like cake and ice cream.  She cried and scraped it off her tongue with her gums. This year the cake and ice cream is for the adults. No need to torture her.  She loves savory foods like turkey and lamb.  Spaghetti and chili are her favorites.  She has an amazing amount of patience.  She can wait calmly while you find a new show for her to watch on her tablet.  She will even wait for you to notice that her old show has ended before she starts yelling at you. Bekah doesn't stay in bad moods very long.  She gets upset and she is easily comforted and returned to her normal quiet nature. She loves music...most music.  Every now and then, we come across a song or a band she hates and she will protest loudly until it's over.  She has a particular fondness for Django Reinhardt and early jazz.  She loves physical and play therapy.  I think she would skip occupational therapy if she could. She hates having her mouth messed with and occupational therapy focuses on feeding.  

Medically, we have not learned much over the past two years.  We know that her muscles are paper thin, but we don't know why.  We know that her muscle cells do not match and this could be what's causing the weakness.  We know that, with physical therapy, she can improve, but that this improvement is very fragile.

In this upcoming year, Bekah will see a geneticist who can hopefully shed some light on these mysteries.  She will meet with a neurologist at UCLA who specializes in cases like hers, hopefully confirming her suspected diagnosis of Congenital Fiber-type Size Disproportion.  Hopefully we will have some answers. Hopefully this year brings progress that cannot be erased by a cold.

Next year Bekah will be three and she will start school. If she is strong enough, she can go to a special needs school with other children.  This is our dream for her. Otherwise, a teacher will visit our home.  We want her to socialize and learn from her peers, but her health is paramount.

Being silly and enjoying a show at the hospital.