Microcephaly Day | September 30

Microcephaly awareness day is tomorrow, September 30. Although we will never know the actual cause of Sarah's delays, her pediatrician suspects that at some point early in my pregnancy, her brain suffered from a lack of oxygen.

When she was born, she was so tiny despite being almost 1.5 weeks overdue. Barely six pounds and 17 inches tall. I had never held a baby so tiny.

We had never heard the term "Microcephaly" until we began seeing our current pediatrician around Sarah's third birthday. His diagnosis was almost instant as soon as he saw her. The Mayo Clinic defines microcephaly as:

"a rare neurological condition in which an infant's head is significantly smaller than the heads of other children of the same age and sex. Sometimes detected at birth, microcephaly usually is the result of the brain developing abnormally in the womb or not growing as it should after birth." (Mayo Clinic)

I believe that microcephaly is the greater diagnosis rather than the cerebral palsy. I have no medical reasoning other than doing my own research and seeing the effects of it. Sarah's head circumference is 47.6 centimeters which is average for a 20-22 month old. In comparison, a nine year old should have a head size of about 52 centimetres.

The consequences of microcephaly are:

"...depending on the cause and severity of the microcephaly, complications may include: 

• Developmental delays, such as in speech and movement
• Difficulties with coordination and balance
• Dwarfism or short stature
• Facial distortions
• Hyperactivity
• Mental retardation
• Seizures"

(Mayo Clinic)

With Sarah, the most obvious effects of microcephaly are her severe developmental delays. She doesn't act, behave, speak or learn like a typical 9 year old. Instead it's as though we have a 3-4 year old all the time. We have seen that over time, her coordination and balance have improved quite a bit. She struggles to walk long distances so the stroller is still a useful tool in our lives. 

She loves life. Other than a few things that make her unhappy, she is an absolute ray of sunshine in our lives. Her family is her world and many times during the day she will check in with me as to everyone's whereabouts. Sometimes she will just say "mom" to make sure I'm still around. She is so easy to please with a walk, visit to a park or a quick trip out for some fries or a donut. She loves to play with Duplo, wooden trains, and stuffed animals. 

Having a child with a "special needs" label was not something I ever thought I'd have but Sarah has enriched my life in ways that I cannot explain. I am blessed and can't imagine life any other way.

Tuesday Thoughts...

For the past couple of days, I have waited to go to the park with Sarah until the evening. She's on some medication that makes her skin more sensitive to the sun so we've gone out after supper. Last night as I was reflecting and watching her play, I had a few thoughts come to mind. Sarah is nine years old. Her style of play would say otherwise though. As I was observing her it seemed like the word "simple" was one to describe her. Sure there are other things that make her uniquely complex but something about seeing her play outside was simple. She went on one slide over and over again with no need or desire to try anything else out. Part of this is because the amount of louder kids on the other equipment keeps her from venturing too far. After 20 or more "slides", we made our way to the swing, her little hand tucked in mine. The large swing, designed for special needs kids was free and she quickly made her way over. This type of swing allows her to relax and fully enjoy the swinging motion without having to think about holding on or balancing. After the swinging, we made our way back to the now empty climbing structure where she began to take my order and made me coffee, fries, and hotdogs.

She's a quiet observer when she's out. Occasionally she will interact with other kids but only if there's one or two and if they appear to be calm and usually they are younger in age than her but closer to her developmentally. Last night I was her playmate and we had a wonderful evening together. These are the things she remembers and I love being with her, playing and watching her discover the world around her.

The swing that makes her feel safe and secure

Pediatrician Appointments {03.22.17 & 06.27.17}

March is cerebral palsy awareness month. This term didn't mean much to me until the winter of 2011 when after an MRI showed that Sarah had CP which was likely caused by oxygen deprivation while I was pregnant with her. I had heard the term before but on November 25, it became personal. I was the mom of a child with a diagnosis and I now fell into a whole new category of "special needs". 

Cerebral palsy (CP) is a disorder that affects muscle tone, movement, and motor skills (the ability to move in a coordinated and purposeful way). Cerebral palsy can also lead to other health issues, including vision, hearing, and speech problems, and learning disabilities.

CP is usually caused by brain damage that occurs before or during a child's birth, or during the first 3 to 5 years of a child's life. There is no cure for CP, but treatment, therapy, and special equipment can help a child who is living with the condition.  Cerebral palsy affects muscle control and coordination, so even simple movements like standing still are difficult. Other vital functions that also involve motor skills and muscles such as breathing, bladder and bowel control, eating, and learning may also be affected when a child has CP. Cerebral palsy does not get worse over time.

Cited from this LINK. 

Sarah had her quarterly pediatrician appointment this morning and her measurements are as follows:

March 2017
Weight: 45 pounds (up 3 pounds from December) 1.3 percentile
Height: 47.8" (up 0.8" from December) 4th percentile
Head Circumference: 47.3 cm (no change since last March) -3.7 below Standard Deviation

June 2017
Weight: 49 pounds (5th percentile)
Height: 49 (8th percentile)
Head Circumference: 47.3 (-3.8 below Standard Deviation)

It's Been a While...

My last posted blog was in October of 2016 - it's been almost a year since I last wrote anything here. All I was really doing was writing about Sarah and her doctor appointments and figured no one was really interested or cared except for me. The other evening Doug mentioned to me that I hadn't posted in a while and so I got to thinking and decided I'd try to get back into it on an occasional basis.

My first challenge will be to come up with things I want to write about and then go from there.

So this is my new start... and we will see where this takes me...