IEP. Or "Individualized Education Program".  Something that Michael and I are all too familiar with, being teachers.   As stated by Wikipedia,  "An IEP defines the individualized objectives of a child who has been found with a disability, as defined by federal regulations. The IEP is intended to help children reach educational goals more easily than they otherwise would. [1]  In all cases the IEP must be tailored to the individual student's needs as identified by the IEP evaluation process, and must especially help teachers and related service providers (such as  paraprofessional educators ) understand the student's disability and how the disability affects the learning process." This past Monday, Michael and I had our first IEP meeting with the team at Ella's preschool, Ann Reid Early Childhood Center.  The team consisted of the assistant principal, Ella's teacher for next year, school nurse, social worker, physical therapist, occupational...

My computer at work has a picture of Lindsay and me on our wedding day as its desktop picture.  I get to see my beautiful wife throughout my workday as well as travel back to a time that seems, in retrospect, so much simpler. I look at our eyes in the picture, for they say that the eyes are the "windows to the soul", and I see eager anticipation.  I see two people who found each other in a world that is complicated and unpredictable.  For myself, I had found someone after many years of searching, waiting, and wondering.  I had found someone with whom I knew was to be with me until the end of time.  I feel the same sentiment from her...each and every day. I look at the picture and I can see our optimism.  I can see that we had no clue, no idea, no inkling of what our lives would become after we were to leave that church.  Honestly speaking, I wouldn't change it for the world. We have three beautiful children.  Each one of them a pleasure to ...

For most people, over 3 years of age, the act of walking is pretty much a non-thinking affair.  For  most  people that is. There are those who simply cannot walk, for a variety of reasons. Our daughter, Ella Sabine Casten (born on June 10th, 2010), was diagnosed with Spinal Muscular Atrophy (SMA) Type 2 in August of 2011. She's never walked entirely on her own.      Unless something changes...she never will. SMA is a progressive, degenerative, neuromuscular disease that is considered (for Types 1 & 2) a terminal illness. The motor neurons (which control voluntary muscles) of its victims are affected.  People with SMA  lack the protein necessary to keep the motor neurons alive and functional...in response, the muscles atrophy (waste away) over time.  Swallowing muscles can also be affected.  In addition, respiratory muscles are affected, which is why the disease is considered terminal.  If a child with SMA gets a ...

Today was kind of a hard day for me. Change is always hard, even when it's for the better. We added two new ways of doing things with Ella in the past week.  For one, she's wearing underwear now. And second, she's now doing all four of her feeding tube feeds during the day (instead of three during the day and one overnight). The potty training was definitely initiated by us. We've been ready to be done with diapers for a long time, and Ella has been equally on board. And it's a good thing. Well, it WILL be a good thing, once we get used to it. Switching Ella's feed schedule was initiated by a medical professional, and we further discussed it with Ella's neurologist and pulmonologist at Lurie Children's last week. We all came to the conclusion that if Ella does well without an overnight feed, it is actually safer for her. Sleeping on a BiPap machine and doing a feed at the same time poses some risks.  Some air from the BiPap can (and most likely...

It has been a long Spring Break.  Very looooooooong. This potty training thing has been one of the most challenging things I've ever done as a parent.  It is SO much harder potty training a child with SMA than it is a child without.  It is physically and emotionally exhausting. We started last Friday, and luckily Ella quickly learned how to pee in the potty.  Unfortunately, being on an all-liquid diet, she needed to go about every 10-15 minutes.  If she was sitting on the potty, she'd go there.  If she was somewhere else, she'd go wherever she was.  She had no idea how to hold it or tell us if she needed to go. After almost two full days of this, I was about ready to give up.  It was too hard and too stressful.  But I forced myself to push through, knowing that I had given myself all of Spring Break for this process. Luckily, by the end of the day on Saturday (the second day), she started holding it longer and even sometimes telling u...

Ellen (resident), Linda (Ella's PT), Ella, and Mary Massery The effects of SMA reach far beyond what the eye can see.  As Ella grows, so do the complications associated with the disease that ravishes her muscles, taxes her patience, and elicits questions that no child should have to ask. About 6 months ago (October, 2012) we had a routine check-up with Dr. Prestridge, Ella's Pulmonary Specialist.  We spoke mainly about general respiratory health and bipap settings.  Of course a physical examination of her chest ensued.  One thing the doctor noticed was a small protrusion at about the center of Ella's chest.  She said this was typical for people with weakened muscles.  She then proceeded to refer us to a highly recommended physical therapist who specializes in pulmonary/respiratory PT. Her name is Mary Massery. Mary Massery has a vast wealth of experience and expertise in terms of pulmonary/respiratory health.  She has been in p...

Going to the bathroom. It's not something that you and I give much thought to throughout the day. But Ella does.  She has wanted to use the potty and wear "big girl" underwear for months now. We potty trained both Ava and Henry right when they turned two years old.  One day they wore diapers, and the next they wore underwear. Cold turkey. And it was actually quite easy.  Of course there were some accidents in the beginning, but within a few days, they had it down. With Ella it's a little different. Once she's trained, the steps involved with each trip to the bathroom will look a little different compared to the "typical" toddler: 1. She'll tell us she needs to go potty. 2. We'll take her to a comfortable spot on the floor and lay her down. 3. We may or may not need to remove her TLSO (back brace)...currently she wears leggings that go under the brace, but hopefully we'll make it work so they go over it. 4. We'll remove her ...