Friday, September 30, 2016

Microcephaly Day {2016}

Today is Microcephaly Awareness Day. This is the diagnosis that I feel affects Sarah the most, even more so than the Cerebral Palsy.

The Mayo Clinic defines microcephaly as:

We don't and likely never will know the cause of this condition in Sarah. Because we didn't see her current pediatrician until she was three years old, his suspicion is that she suffered from oxygen deprivation at some point in my pregnancy with her. There was nothing I could have done to prevent it, it was just something that happened.

Sarah's head is significantly smaller than the heads of other eight year olds. Her's is actually below the standard deviations or average. A typical girl of her age will have a head around 51 cm in circumference, while Sarah's is 47.6 cm. This puts her at about a -3.4 standard deviation and it probably will never catch up. I'm pretty sure it is the microcephaly that is the cause of most, if not all of Sarah's delays.

We have no idea of how Sarah's development will progress over the years. We have made the decision to not put her in a school and therefore I am her primary teacher and therapist. I find all my resources online and do my best to help her learn and understand the world around her. This week, she managed to trace a few letters in her workbook. The letters have little to no value to her but she was able to follow my instructions, hold the marker quite well and focused on tracing the letters. I'd guess in this area, she's about 3.5 years old developmentally. She loves things that I'm sure most 8 year olds are past. Curious George, Paw Patrol and toys geared for young preschoolers. But boy does she love life! Every morning I'm greeted with a cheerful "good morning Mom!" and for the most part, the days are filled with her endless chatter about all the things that are important to her. She loves her family and finds it important to know where everyone is at any given point. It is best when we are all home and she can keep track of us all. She is a delight to everyone we meet and I am so thankful that God placed her in our family to show us how to love in a totally new and wonderful way!

Monday, September 26, 2016

Pediatrician Appointment {09.13.16}

September brings with it a new school year, schedules and a return to routine. For us, it's also the month that Sarah has her 6 month follow up with her pediatrician. The good news is that Sarah grew an inch since the last time we were in. I can tell because her pants are all seemingly too short for her now. The not so good news is that she hasn't gained any weight. That means at 42 pounds, she is in about the first percentile and has (for now) fallen off her curve. She's still in the 3rd percentile for her height but her doctor says she's too skinny. For now, she needs to be eating pretty much anything we can get into her and we go for another weight check in December.

On another positive note, we did start school again and we began with a pre-printing workbook. She's able to follow the lines of a few letters and match them up with the alphabet pictures we have on the wall. They still have no value to her but she enjoys her school time with me. She will last between 5 and 7 minutes at the table and then wearily says, "I'm so tired, can I be done now?" She still does most of her learning through toys, blocks, her dolls & stuffed animals and sensory bins that I make up for her. Her iPad also has quite a few educational type apps where she traces letters and shapes while the app identifies them for her. I've noticed too, that she's starting to remember the words of stories and will fill in some words and sentences for me. She loves to pretend with us, tell goofy knock knock jokes and cuddle. One of her favorite games is to play that she's taken my nose (or anyone else's) and throws it away. She is keenly aware of my emotions and anytime I am anything other than happy, she is quite concerned and makes it her goal to cheer me up. Her impish little grin is irresistible and more often than not she makes me smile.


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