With the weather being so nice today, I decided to take Ella out for a walk in her power chair.  For her first time "really" using it, she did pretty well!  She definitely has a long way to go, so I'm very excited/anxious to get the new car so we can get her out into the world to really learn how to maneuver it!  As strange as it is to see her in this chair (and a little bit hard for me), it is so nice to see her being able to get around so effortlessly.  *Sorry about the lack of steadiness of the video...I was trying to keep up with Ella and prevent her from running into trees, fire hydrants, etc. :)

Ella's play time is becoming more and more difficult. And more and more frustrating. For all of us. Her weakness is preventing her from being able to lift most toys (even the small ones). Up until this point, we've helped her. But she's 1-1/2 years old. And she's decided she no longer wants our help. She wants to do everything by herself (like most toddlers). But she's not like a typically developing toddler who gets frustrated when they can't reach something up high, or open a cabinet with a childproof lock on it. She gets frustrated when she can't lift a small container of Play Doh. Or a Matchbox car. Or push hard enough with a crayon for it to actually make a mark on the paper. And when we try to help her these days, she just gets angry and throws herself down (or her head back if she's in her wheelchair), and then can't get back up, making things even worse. I don't know how to make play time easier for her. I don't...

I'm having a "mad at the universe" kind of day. It doesn't help that we got about an hour of sleep last night (Ella finally stopped crying around 4:30 am).  And that was on top of a pretty rough day yesterday.  In addition to having a mouth FULL of canker sores, which is nothing new for me, but it's been a while since I've had so many that it makes me feel physically sick.  But leading up to Thursday, I was having a pretty good week.  I was in a good place.  Almost a little at peace.   I expressed these feelings to our pastor this week, and he started to say something, stopped himself, and then said "Never mind, I shouldn't tell you that".  When I asked him to elaborate about what that was all about (c'mon, everyone knows you can't do that!), he made an up and down motion with his arm.  A roller coaster motion.  Bursting my little bubble of thinking that I might be finally ok with everything.  Ha.   But of course he wa...

A thread. A thin thread. I picture it hanging from a large object above me.  That object represents my ability to cope on a day-to-day basis with what stares at me, challenges me, and places its grip around me. The thread glistens in the light that hides behind the scenes as my fingers, white tipped with pain, squeeze it in efforts to support the weight of our journey. I look up at the thread each time SMA slaps us in the face and notice the fibers tearing away as I spin slowly around in my world.  I dare not look down. The emotions that arise without warning are intensifying.  I have learned throughout my life, however, how I can manage intense feelings.  I know that when I step out of my house and into the world that I must place the emotions aside and focus on the day.  When I greet my students and we begin our day together I take myself to a place that allows me to do my job and teach them to the best of my ability.  I know that as I go t...

This morning was Ella's swallow study at Edward Hospital. She was a champ, as usual :) She had to fast before the test, and had hardly eaten anything yesterday, so she was good and hungry when it was time to eat for the x-ray! Luckily, her swallow function is great! She shows no signs of aspirating. So the question still remains as to why she doesn't eat very much. It could be that she is fatiguing while she eats, however, she usually doesn't take more than a bite or two (if that) when we sit down for a meal. Luckily she drinks Pediasure, which helps to get extra calories in her body. Since we started giving it to her back in October, she has maintained her weight percentile (below the 3rd percentile, but she's been stable there). Prior to the Pediasure, she had dropped from the 50th percentile down to the 3rd in 6 months. Dr. Kuntz said that her concern with Ella not eating much is that if she gets sick and won't eat or drink at all (including the Pedia...

I placed Ava in Ella's wheelchair because I was fashioning some kind of a support for Ella and needed a "test-pilot". She obliged. The minute I placed her in the chair my mind took off to a place I haven't visited as of yet. Ella as a four-year old, a toddler...and eventually a kid. She's growing up so fast. Her language is increasing at a impressive rate, she's breaking more teeth, she's interacting on different levels with us and her siblings. She's growing. Tonight she counted to eight! Seeing Ava in that chair brought to my mind the future that we yet have to experience. What will that hold? How will we handle this? What might be the challenges that Ella will have to face? What will Ava and Henry be in response to all of this? The equipment, the doctor visits, the scoliosis, the atrophy, the self-realization that Ella will encounter regarding her SMA...all of this and more looms in the horizon. Lindsay and I talk a lot about what we are d...

I'm concerned. That might be an understatement. We know that Ella will develop scoliosis at some point. We were told probably not until later in childhood. But at her first visit at the Shriner's clinic (in September), the orthopedic surgeon said he noticed a little curve already. But it was nothing to worry about yet, as her bones are still flexible. Well, we've been noticing that when Ella is in her little wheelchair, she's really starting to slouch to one side. Her trunk muscles just aren't strong enough to support herself in a completely upright position. So I decided to take a closer look. I took off her shirt and had her lean forward a little so I could really see and feel her spine. And it is noticeably curved. So now I'm worried. She's not going to the new clinic (at Children's) until April. At that visit she'll meet with her new orthopedic surgeon (along with the other doctors/therapists) and will be evaluated. I...

After the holidays were over, I breathed a huge sigh of relief. The weeks leading up to Christmas were stressful, to say the least. In addition to the many preparations to be made leading up to the holidays, we were dealing with mixed emotions of this first Christmas with SMA being part of our lives. After winter break was over, I was looking forward to getting back into a routine. Our routine. But what exactly is our routine these days? Right now, a typical week includes: Preschool on Mondays, Wednesdays and Fridays for Ava (Henry also goes on Mondays) Physical therapy for Ella on Tuesdays Church groups for Michael and me on Wednesday nights Aqua therapy for Ella on Thursdays A mom's bible study group on Friday mornings Occupational therapy for Ella on Fridays These things are constant. They are in our calendar as "repeating events". But I'm looking ahead to next week, and I'm a bit overwhelmed. These are the extra events (in addition to the ones listed abov...

Every day I think to myself, "This HAS to get easier." But it hasn't. In fact, it seems to continue to get harder. Typically, as kids get older they become more independent.  But not Ella.   As Ella gets older, her mind wants to do more. But she's also getting bigger so her body is becoming harder to move. If we're at a place where she can't use her little wheelchair, we're finding that she's getting very difficult to hold for longer than 5 to 10 minutes. And we've already started to have a hard time supporting her the way she needs to be supported. There have been several occasions recently when Michael and I have passed her to the other person and her head falls back unintentionally. We're usually very good about supporting her weak body, but it continues to get weaker (as she continues to get heavier). It's hard for her to play with anything for more than a few minutes without help. If she wants to play with something else, ...

Ella hands Ava a crayon; she helps... Martin Luther King Jr. Day.   A man.  A vision.  A preparation for people of all races, all creeds, all abilities. I read an article this morning about MLK Day and People with Disabilities (known as PWD).  It dawned on me that Ella lives in a world that has moved forward in recognizing the talents, skills, and accomplishments of those stricken with a disability.   I remember, when I was a child, looking around and seeing where the sidewalk meets the curb at the intersection and how it is graded at an angle to allow for wheelchair access.  I can remember when society began making those everywhere.  I didn't pay much attention to them then, I thought to myself, "Oh, that's nice.", and went on with my own child-like business.  I recall working at Jewel as a teenager and seeing the management hiring people with disabilities; I thought to myself, "Oh, that's nice.", and went on with my assigned duties...

We stepped out into the brisk, cold morning. The sun shone brightly as we saw our breathe escape us. We thought of the many people who, by this time of the morning, had already started the half-marathon they were running in honor of Ella. A half-marathon.                    Mid-January.                                  Chicagoland. Ella faces a lifetime of challenges. Each day is a challenge for her to simply do the things that most people don't even think about as they do them. Sitting, for example, can be a struggle. If she is not in just the right position she will fall...and she cannot stop herself. Eating, drinking, playing...a challenge. Getting from one room to another; pointing her finger to show what she wants; coughing...a challenge. Picking up a crayon; pressing a simple button on a toy; and yes--even sleeping.....

There's a transition between our family room and the kitchen that separates the wood floor of the family room from the ceramic tile of the kitchen.  It can't be more than 2mm high.  It rests on a ridge between the two floors as they transition creating a slight angle.  The angle can't be more than 5 degrees.   When we put in the new wood floors, for Ella and her manual wheelchair, she was unable to get over the original transition (it was maybe 4mm high).  A friend of ours modified the transition to its current state and we re-installed it.  Ella had a bit of an easier time with it but still could not navigate over it on a consistent basis.  We resigned ourselves to the fact that one of us would have to give her that little teeny push she needed to clear the transition.  So it goes. I have noticed in the past few days that she has suddenly appeared in the kitchen!  There she is, doing her little "Ella Dance" in her chair--in the kitch...

The moments before bed are the best times to whisper into the ears of our children; to tell them how they delight our lives, the ways in which we love them, and to place a soft kiss upon their tender skin. The other night I had Ella in my arms, rocking her before placing her in her crib.  The lights were off, the usual glow of the moon gently making its way into the room, the flicker of the "flameless-candle" that reads, "Be still and know that I am God..." danced on the ceiling. As Ella's eyes softened and began to pave the way for slumber I whispered into her ear the words, "There are so many people that love you.  We will all help to take care of you."  I stroked her under her chin and she nuzzled her head against my chest, seemingly understanding the words that found her ear.  After our prayer I placed her gently into her crib, kissed her goodnight, and allowed slumber to wrap its arms around our little girl. The next evening Lindsay and I walke...

New 311 pound wheelchair, meet our 2010 Honda Odyssey. Hmmmm...not so much. We knew we would need some car modifications in order to get Ella's new power chair into the car. But we've run into some snags (of course). The biggest being that we have three children who need to be in car seats. Plus a 311 pound wheelchair. Ella is not old enough to ride in her wheelchair in the car. She won't be until she is able to ride using a regular seat belt (4 or 5 years old). So for now, we need all three kids to be in their car seats, plus the power wheelchair on it's own. This morning (Saturday) we met with a representative from Mobility Works (Adaptive Vehicles). Our first thought was to use a wheelchair lift in the back end of the car. This device mounts to the inside of the car and acts like a crane. It has a hook that grabs the chair and lifts it up, then we swing it into the back of the car and secure it to the floor. The lift can support the weight of the wheel...

I recall walking into the kitchen yesterday, making my way toward the coffee maker en route to getting the next day's coffee ready. I stopped and looked around the room. It was quiet. The night surrounded our home and faint lights shone from night-lights strategically placed around the house. I felt it. A rush. A wave. A thrust through my body. It felt good. I haven't felt that way in such a long time. As quickly as it came it left. My body felt heavy again. My mind cluttered. I lumbered to the coffee machine and prepared it for the next day. My mind is filled with decisions that need to be made, realities that need to be faced, and blank stares that need to be broken. The two worlds that Lindsay spoke of in an earlier blog are indeed beginning to mesh...it a process that is messy, unbalanced, and deliberate. My emotions sometimes become dry. There is no anger. There is no sadness. There is no fear. It seems like they have dislocated themselves from me...

Ella's an old pro at the doctor routine... We arrived at Children's Memorial Hospital at 2:50 pm for our 3:00 pm appointment. We were in the wrong building. Dr. Nancy Kuntz was 8 blocks away. The hospital has a shuttle service to the location. We decided to go that route and hopped on the shuttle. By 3:10 we were signing in to the neurology department. Our consultation with Dr. Kuntz was about to begin. We had heard from several sources that Dr. Kuntz is an incredible pediatric neurologist who has dedicated her career to neuromuscular diseases, including SMA. She is highly respected among her peers, has a reputation of being proactive in the care of her patients, holds a firm grasp on the current research being performed, and takes a vested interest in conducting her own research with whatever facility she is associated with as a professional. Ella wheeled herself into the office in Lincoln Park and Dr. Kuntz's staff welcomed her with open arms and...