The brightness of her eyes met my gaze as I entered Ella's room at Lurie’s Children’s Hospital in Chicago. The room looked brighter from when I left 45 minutes earlier. Ella’s eyes then glided away from mine and steadfastly smiled at Sylvia (name has been changed), a hospital volunteer, who had been with Ella while I was gone. -------------------------- Leading up to Ella’s spinal fusion surgery, the anticipation held a plethora of emotions; from excitement for a straighter spine--to the dreaded fear of the pain that goes along with this kind of surgery. Her spirits, however, remained optimistic. On a Thursday, Ella entered Lurie’s Children’s hospital in Chicago…ready for her life to be changed. When the surgery team was finished, Ella was placed in the PICU (Pediatric Intensive Care Unit) primarily to monitor her respiration and pain for several days. Her pain was constant and it was difficult on her; and on anyone who was with her. She was on Dilaudid, Oxycodone, Valium, and Tyle...

The winds are whipping the leaves around and a chill fills the air. Trees are barren of their covering and branches stand out against the bleak, dreary sky. The year rolls to its last month, promising joy, peace and hope.  The holidays are upon us for this year and the usual preparations are taking place. Our Christmas tree is up and decorated. A family affair that we embark on each year. Completed with the talk of Christmas's past; certain ornaments reminding us of people, places, and blessings.  The house smells of winter as scented candles flicker throughout the day. Christmas trinkets fill the spaces where family pictures and non-holiday decorations once stood. Lights adorn the fireplace as the wood inside waits to be lit on a frigid, wintry night. The warmth in the house, as you step in from the cold, warms your bones and is akin to the love that abounds within. Christmas music plays throughout the day reminding us of the true meaning of the holiday. Our kids are ...

Ella was taken out of her cast this past Thursday from her broken foot. Her leg atrophied a bit while the cast was on and we'll have to get her back into using it as she did before the break occurred. We are in the midst of obtaining new AFO's (Ankle Foot Orthotics) as she has outgrown her current ones. In the meantime, we are extra gentle with her as we transfer her from place to place.  As for our handicapped accessible van, the door on the ramp side is still non-functional. We took it to Superior Van and Mobility in South Bend, IN to have it fixed. After diagnosing the problem they informed us that we need to first take it to Honda to fix the issue---then we'll have to bring it back to Superior for the final touches that are required. In the meantime, the other automatic door doesn't work either unless you manually open it. So that's what we do. We use Ella's manual wheelchair (The Zippie) and place her in the third row seat and place the Zippie in the whe...

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...