Namine
Namine Olivia Eiche was born on July 15, 2008 with a double-inlet left ventricle heart defect; Pierre Robin sequence, a condition that resulted in a regressed jaw and a partial (U-shaped) cleft palate; caudal regression syndrome (also known as sacral agenesis), which damages the growth of the tailbone and legs, also giving her clubfoot; and scoliosis.
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Namine’s reason
A number of weeks ago, Namine was seen for the second time by a neuropsychologist. We have since seen and read the report, and we are not convinced she’s correct.
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At the pain clinic
That sounds rather sinister, doesn’t it? “Welcome… to my house of pain.” Not so, however. Namine simply had an appointment to discuss her headaches.
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The problem with worksheets
Namine and I did a little impromptu time-telling and math tonight.
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Exciting news
We have some amazing, amazing news. Namine has been approved for her Make-A-Wish at Disney World!
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Weather Day at Miller Park
So on Thursday the three of us joined other RVA families in attending a baseball game. It was a bit cold, but we had a lot of fun.
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Book club
Yesterday evening Namine joined in an online book reading. Four children, herself included, read from books of their own choice.
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Special Needs follow-up
Yesterday afternoon, Namine had an appointment with the Special Needs department head.
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Another late night
We went back to Urgent Care last night. Namine’s cough had changed, and we were concerned that something might have traveled to her lungs.
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Easter bulletin board
It’s been more than a week now since Easter Sunday, and I still haven’t posted about our bulletin board. That’s kind of fitting, since we didn’t even get the board up until the night before Easter.
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A weekend of sickness
Things often don’t go as planned. This weekend was one of those things.
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Easter Sunday
On Sunday Namine and I went down to Jessica’s sister’s house for Easter lunch.
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Reacting to negativity
A question was asked on the Pierre Robin Sequence board: As a parent to a special needs child, do you get offended when people ask “whats wrong” when they see a trach or something out of the norm with your child? how do you react to the question?