August 15, 2012 by Rieshy
Otherwise entitled- What finishing the growth spurt of early childhood has meant for my son with a FOD *.
Last year our 5 year old could not ride his bike more than a block or two.
At 6 years he begs to go round the mile long trail over and over.
Last year our 5 year old had to eat every two hours during the day. On the dot.
At 6 years he can he can safely go 3 hours.
Last year I still had to feed and give meds to our 5 year old during the night.
At 6 he can sleep until morning.
Last year my son spent a harrowing week in the hospital after a flu induced metabolic decompensation.
This year has been incident free.
Last year our son was in physical therapy for severe upper body weakness.
This year my son can swing the monkey bars with aplomb.
I planted a tiny Crepe Myrtle last year.
This year it fills my window.
My son's great year fills my heart.
*Fatty Oxidation Disorders (FODs) are genetic metabolic deficiencies in which the body is unable to oxidize (breakdown) fatty acids to make energy because an enzyme is either missing or not working correctly. The main source of energy for the body is a sugar called glucose. Normally when the glucose runs out, fat is broken down into energy. However, that energy is not readily available to children and adults with an FOD.
When diagnosed and treated AT BIRTH the prognosis for most of the FODs (i.e., MCAD etc) is excellent. Most can make adjustments to diet/meds when necessary during times of extra activity and illness and lead a full life. However, if undiagnosed and untreated, these disorders can lead to serious complications affecting the liver, heart, eyes and general muscle development, and possibly death.
August 8, 2012 by Rieshy
What do you do when your big sister breaks a flower arrangement?
If you are my 13 year old you take a picture of course.
My 13 year old is away visiting grandparents. I had to get on her iphoto to look for a photo that she took specifically for me to post. Opening her iphoto library was like stepping into wonderland. Since this particular child got a camera I've learned that if I cannot find her it's because she's outside taking pictures. Does that mean she's done fewer chores lately?
Let sleeping dogs lie applies to children who are concentrating on something constructive. Who knew that 10 photographs of a lantern or our doorbell could look so cool?
Here is the goofy photo of my oldest that sent me to her iphoto to begin with. This photo clearly illustrates why my little boys adore going to the park with their big brother.