Ella's first day of school went well. She woke up early, I got her dressed and she was all ready for the annual "first day of school" picture. Her 4th Grade teacher is on maternity leave and there is a long-term substitute teacher running the class. Ella said everything went well. They did some "getting to know you" activities, had Gym, and did some other activities throughout the day. When she returned home she jumped right into her book and began reading. When I arrived home from work Ella told me all about her school day. She was excited and sounded motivated to do well this year. As a 4th grade teacher myself I know that it's a big transition from 3rd grade. There's more reading for meaning and much writing. Math gets more challenging as well. It's the beginning of intermediate type learning. The afternoon of the first day of school was fairly calm around the house. Lindsay and I stepped out onto the porch to have some "mommy and dadd...

Ella is a very social girl. She loves spending time with family and friends. She loves to go to school events and she always adores her classmates. The Fall promises that school will begin. Ella will be in 4th Grade. Many of her friends have extra-curricular activities that teach them skills, teamwork, and perseverance, as well as serving to socialize them. Ella can't join physically demanding sports because of her SMA, but there is one thing she can do---sing! She often sings songs while she plays and many times the house is full of her voice. She received a karaoke machine for her birthday in June of this year (2019). Using an app on her iPad, which is paired with the karaoke machine, she picks music that she knows and the lyrics appear on her iPad. She sings along with the tune demonstrating confidence and vigor. Several times she has brought family members to tears with her beautiful voice. Ella auditioned for the Young Naperville Singers (YNS), that will begin in the Fa...

The only sound in the house is the washing machine doing its work. The kids are off at camp and Lindsay is in the hospital. The dogs follow me around the house wherever I go--they know something's up. When I ask them where Ava, Henry, Ella and mommy are, they tilts their heads and look toward the front door. Lindsay's kidney surgery went well. They removed the tumor and 5% of her kidney. The recovery, however, has been very rough for her. When we met with the surgeon a few weeks ago he said he would make five small incisions in her abdomen.  Right before surgery (in pre-op) they told her it'll feel like five stab wounds.  She wasn't expecting it to hurt as much as it does. It hurts her to talk, laugh, or move. She is being discharged today (Wednesday, July 10) and will complete her recovery at home. She has a hard time getting in and out of bed as she must use her core to do so---and it is very sore and painful. I went to IKEA and, using donation money ,  purchased a...

Everyone in the house had a red face. Energy levels were down and the heat was becoming unbearable. Our air conditioner stopped working days ago and the house was easily 85-90 degrees. We called the heating and cooling company recommended by our neighbor and they assessed the situation. As it turns out, we need a new central air conditioner and a furnace. They were kind enough to supply us with two portable air conditioners to help keep us cool. The first one is in the kitchen eating area and the second one is in the master bedroom. Ella sleeps in the master bedroom and Ava and Henry sleep on the first floor. We purchased the new equipment and will be paying for it in monthly installments over the next ten years. Installation is set for Saturday, July 6th. Lindsay's second surgery of the summer (second out of three) is scheduled for Monday, July 8th. The kids will be at their respective camps that week so she'll have some quiet time as she recovers.  Lindsay will have the ca...

Ella's summer has gotten off to a good start. Since she is confined to a power wheelchair you might think that going over to friends' houses to play would be difficult to manage. Not in this neighborhood! Ella wakes up at about 9:30 am and asks me to get her dressed and ready for the day. After we're finished with our morning routine she asks if she can go to a friend's house to see if they can play. She zooms out of the house and with her gizmo (a small watch-like device that can make phone calls) she's off and in search of friends. After being away for about 10 minutes she'll call me and tell me where she is and what they plan on doing. The families in the neighborhood are so accommodating for Ella. Sometimes they let us bring over her ramps and one of her manual wheelchairs so that she can play inside...other times the kids just play on the driveway or yard. Just recently, Ella came home and asked to be put into her bathing suit and have her controls cover...

Ella will be attending MDA Camp for the second summer in a row this summer! Last year she was hesitant to go because she didn't want to leave mommy and daddy for a whole week. She had a couple rough nights in the beginning but soon got over her fear. This year...she's ready! Just recently, we got an email from one of the lead counselors of the MDA Camp asking us to share Ella's dreams. This is something they do every year to get to know the kids as well as encourage their dreams. Ella has many dreams for herself. She wants to be a singer, she wants to walk, she wants to be independent, she wants to get married and have kids, and more. I had a whole list of ideas to share with the counselor but had to chose only one of them. I decided to go with Ella's dream of getting married and having kids. Ella loves weddings; as we went to one over this weekend. She was so enamored with the bride, her dress, and what it meant to be a bride.  Right now, however, Ella is all ...

Taking care of Ella requires a lot of lifting, transferring, and adjusting on our part. She's is like everybody else and needs to move in order to be comfortable. This movement occurs all throughout the day and several times at night. We know that there are lift systems available and maybe one day we'll get them; but for now we simply lift and move her. Over the course of the day, like you and me, Ella needs to go to the bathroom. She drives her wheelchair to the bathroom door on the first floor and we lift her out of her chair and onto the toilet. There's two ways to get her ready for the toilet.  The first requires holding her by the waist and lifting her up against our body while she wraps her arms around our neck. We then pull her pants down and place her on the toilet seat. This method makes us arch our back a bit in order for her to get a good grip around our neck and for us to balance her as we pull down her pants. Getting her off the toilet seat is done the sam...