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 ...

Birthday parties are awesome, they are so much fun for kids.  A time to play, eat, dance, socialize, and celebrate.  We were invited to a friend of Henry's birthday party and the invitation was graciously extended to Ava and Ella as well. We knew there would be a moon-bounce at this party.  We knew that Ava and Henry would absolutely love playing in it, as most kids do.  We also knew that Ella would most likely want to join in the fun.  If SMA had its way, she would not be able to enjoy the jumping fun that every child in the room was enjoying.  If SMA had its way, she would sit on the sidelines with wide eyes, wishing she could join the others.  If SMA had its way she would be idle as the children she looked upon felt the exhilaration of bouncing, flipping, and soaring through the air.  If SMA had its way, she would not be able to enjoy the simple pleasure of childhood. She was persistent in her desire to go into the moon-bounce. ...

Today Ella had her evaluation at Ann Reid Early Childhood Center, where she will be attending preschool in the fall. To say she was excited would be an understatement.  Ella has been looking forward to going to school for such a long time. When we pulled into the parking lot, her face immediately lit up while she said, "Is that MY school??" While Ella was being evaluated, Michael and I were interviewed by various members of the team, so that they were able to learn more about Ella as well as any of our concerns. This was our second meeting at Ann Reid, and we were once again very impressed. All of the team members seemed very knowledgable of the needs of a child with a neuromuscular disease (the school has actually had children with SMA before)! Among those at the meeting were the assistant principal, school nurse, social worker, psychologist, speech pathologist, physical therapist and occupational therapist. Ella was also taken on a tour of the building, where she go...

Imagine a burlap bag. It's being filled with cotton. The cotton is soft, it's light, it's squishy. Imagine more and more cotton being placed into the burlap bag.  The incoming cotton seems to meld with the existing cotton already in the bag.  The "old' and "new" cotton become one, each allowing the other to coexist.   Now imagine the burlap bag, with the cotton inside of it, beginning to fill to capacity.  More cotton is introduced and it becomes more difficult to fit in the "new" cotton.  The burlap bag begins to stretch to accommodate this influx of cotton.  The cotton itself becomes pressed for space and is losing its softness, changing rather, to a hard clump in an effort to exist.  More cotton is being added and the burlap bag begins to stretch to its ultimate limit.  The cotton is no longer soft and fluffy...it is hard and unyielding.  More cotton is being stuffed, forced into the bag.  The seams of the burlap bag begin...