An incredible opportunity for Ella awaits her this summer via Young Naperville Singers (YNS). They are performing in Colorado (5-day trip) and she needs a bit of financial help (for chaperone/caregiver costs, special accomodations, etc) to realize her hope and goal of joining her beloved choir this coming summer!

Please share our GoFundMe page as you see fit...

Thanks,

The Castens

The Power of People

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 Tylenol/Motrin for the pain. 

After several days in the PICU, she was moved to the pulmonary floor (to continue respiration monitoring)

where her pain and discomfort continued. It was hard for her to deal with, it was intractable.

The staff at Lurie's worked dilegently with Ella. They helped in so many ways with Ella's pain and discomfort;

positive talk about how she is faring, prompt dosage of all of her medications, distractions with conversations

and fidgets, g-tube feeding, cold and warm packs, daily hygiene, and bedside manners that simply can't be beat.

We felt well taken care of.

On Monday afternoon, Ella had just finished her physical therapy session which consisted of getting her

transferred her to her wheelchair. It was a long, painful process. She cried, she screamed, she

quivered…she did it though ~ despite it taking a lot out of her.

As we were transferring her back into her bed, a hospital volunteer came into the room and stood by the door. She

was quiet and observant.

Ella whimpered as she began to slow down her tears--with the uneven breathing and sobs we all do. The physical therapist

left the room sharing his good advice and some encouraging words which fell on Ella's deaf ears…she was in too

much pain, too uncomfortable, and too drugged up from days of narcotics to make much sense out of

anything.

I thanked the PT and turned toward the volunteer. She introduced herself. Sylvia. We exchanged niceties, and

turned our attention to Ella, who was still whimpering as she waited for sleep to overcome her to afford her

some relief.

I was tired from the physical and emotional energy exerted from the session, frustrated with how uncomfortable Ella was feeling, and my

bunions were killing me. At this point, the volunteer recaptured my attention and told me go out and take a break. I looked at her quizzically

at first, then realized she was right. I needed a break. I told her that I’d be back in 10-15 minutes. She chuckled slightly and replied, “Take

your time, I can stay as late as 5:00 pm…take the 45 minutes”.

A deep breath escaped from me and I nodded my head with all intentions to return in 15 minutes; being

away is just as difficult as being there. Sylvia introduced herself to Ella and Ella basically grunted within a whimper...her frustration was

quite evident.

I left the room.

Once outside the hospital I walked. I people-watched for a bit. I thought of nothing except what was right in

front of me. After a short while of this my bunions started to really ache and my big-toe joints began to

stiffen…I needed the bunion cushions; and badly. I hobbled to the corner of Michigan Ave. and E. Chicago

into the ‘larger-than-I'm-used-to’ Walgreens. I purchased the bunion cushions and some trail mix and noticed that

my planned 15 minute hiatus had turned into almost 35 minutes! The volunteer, Sylvia, wanted to leave at 5:00 pm!

As much as my feet would tolerate it, I made my way “briskly” back to Ella’s hospital room.

My expectations for my return to her room filled my head while navigating Lurie’s hallways. I imagined her as I left her;

tired and frustrated, and experiencing everything horrible that comes from post spinal fusion surgery.

I knocked the customary "someone's here" knock on her door and slid in quietly. I didn't hear any sounds. I figured Sylvia

was gone and Ella was sleeping. I entered softly. I looked at Ella and she was awake and talking with Sylvia who

had pulled up a chair for more intimacy. Ella gazed at me briefly and then her thoughts and attention were

instantly back on Sylvia. I gained both of their attentions with a cough. They turned their heads towards me

simultaneously, two faces filled with smiles, and I was given a pleasant greeting from them. We talked a bit.

The volunteer left as quietly as she arrived. She said a few words to Ella as if to remind her of something, took a

moment to wish me well, and parted ways…probably never to be seen again by either of us.

From that point on, Ella was different. She was calmly talking, smiling every so often, and complained about

her discomforts with an absence of her recent, understandable, frustration. She turned the corner that we were waiting

for her to turn.

All of us had waited, and so did Sylvia, who entered Ella's life at that particular moment.

Sylvia went with Ella through that turn. Their 45 minutes together must have been something really special for the two of them.

The power of people (POP). It’s a curious thing. People come and people go from our lives. Some stay for very short

times and others for a lifetime; and everything in between. Even unknown people on the streets enter and leave our lives

(albeit quickly), usually with little or no consequence, but nonetheless--a part of our living experience.

Sylvia spent 45 minutes with Ella. And within that short time, she was able to reach a part of Ella that allowed her

to come to terms, on some level, with what was happening.

To underestimate one’s effect(s) on another's life stifles our abilities to help do good by them. Every interaction with the

world, and all it offers, serves a purpose. I don’t know where Sylvia came from and I don’t know where she

went…but I do know that she departed right at 5:00 pm, leaving me a bit perplexed yet with a feeling that everything was going to be alright.  

Lurie's slogan reads, "All, for your one"...and it rang true for Ella this summer.

  

 

Joy, Peace, and Hope...(by Michael)

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 older now (Ava, 12; Henry 10; and Ella 9). They thrill at the prospect of celebrating the holiday season with family and friends. They have their gift lists made out and keep wanting to add to them. The winter days are long and they spend time together playing on their computers, coloring pictures, and playing with the dogs. Soon, snow will cover the ground and they'll want to play outside; bundling up to frolic in the winter wonderland. Once back inside, the deep, rich smell of hot chocolate fills their cold noses and they wish to sit with us to play a family game while a fire crackles in the background.

Despite the challenges that face us each day, we move toward the holiday season with earnest anticipation. We seek time together, eating, drinking, and being merry. The realities of life, however, do not escape us...even in this blessed season. 

We thought that after Lindsay's lower right leg being amputated we would enter a time of healing and preparing for a life without her being in pain. This has not been the case. Since she battled her foot infection for four years she did a lot of compensating when she walked and her left knee has taken the brunt of that compensation. She's been diagnosed with severe osteoarthritis as well as several other problems in her left knee. After many doctor visits it has been determined that she will need a total knee replacement...a surgery that carries with it great pain. As of right now, this surgery is scheduled for early January, 2020. Until that time, she has had to wean from all pain medications, so that they are completely out of her system, and can work at full capacity after the surgery. As she walks she can feel the bones in her upper and lower leg chipping away at one another, as recent x-rays have shown that she is completely bone-on-bone. She stops mid-walk, winces in pain, and then continues on her way.

We often ask God why this is happening. We feel there must be a reason for the ongoing problems. We look to the stars God created and question our lives; drawing into a deep, seemingly one sided, conversation with the Almighty. We seek and search for answers that we know will come--but we're in query of what form those answers will take.

In this holiday season we especially look toward God and His miracle of Jesus' birth. We sit back, awestruck at how God has sent His Son to save us. The holiday season brings with it messages of peace, joy and hope; and within the life we live with SMA and Lindsay's health issues, we look to God to provide us with glimmers of each.  From deep within us, however, we remember that peace, joy, and hope comes through the experiences fueled by what God has blessed us with over time. 

We move forward, recapturing our memories, old and new, and forming them into a feeling of gratitude.

We move forward, enlightening our children to the realities of life and to the promise God has blessed us with. 

We move forward, knowing that God is watching over us--extending peace, joy, and hope in His way.

From Summer to Fall...(by Michael)

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 wheelchair spot. This isn't ideal for Ella as she has a hard time sitting upright when we stop and turn...so we drive a bit more slowly these days.

Ella has been thriving in Young Naperville Singers as she has just completed her second rehearsal. She is making progress using her voice as she tools around the house singing and humming. We have noticed that her voice is stronger and more in tune and key. She is making friends quickly at rehearsal and really enjoys the whole experience. 

Next week, Ella will have her dose of Spinraza. It's a process that takes almost the whole day to complete; from getting her downtown, Chicago...finding parking, getting her checked in and completing the pre-surgical analysis, to the procedure itself, recovery, and of course, a special lunch at the hospital...then we return to Naperville from Chicago. We have, however, noticed an increase in her strength and stamina...so we are very grateful for the treatment.

Ella is now in 4th Grade. She does her homework everyday on her own and seems to enjoy the math and writing the most. She is reading everyday and is working on reading novels. She has made wonderful friends at school with kids her age and even kids a grade or two younger. She has a lot of play dates these days and is spreading her social wings.

Lindsay now has her prosthetic foot and is wearing it more and more as she gets used to it. She's finally walking! 

It's hard to believe we have a 7th grader (Ava) and 5th Grader (Henry) and a 4th Grader (Ella) in the house. They get along a lot of the time but they certainly have their moments with one another. We feel it's a good thing that summer break has ended and we're getting in the routine of school. As we move from the lazy days of summer to the filled schedules of Fall we are reminded that we are fortunate to have the love and support of so many people on so many levels. 

The Break...(by Michael)

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 daddy" time. This is when we catch up with one another and connect for the day. The kids are really good about respecting our time together. 

We were in the midst of ordering Portillo's for dinner when Ella came outside. She said she was hungry and was wondering what was going to be for dinner. We asked her what she wanted from Portillo's and she was on her way back inside. A moment later Ava came running outside to us and said that Ella got hurt and she was crying hysterically. I quickly ran inside and found her on the deck, tears rolling down her face, and screaming. I asked what happened and she managed to tell me that Potter ran into her left footplate and it went up all the way with her foot still on it. I got her to come inside and took a look at her foot. It was swollen and I could see bruising starting to form. Lindsay came in and looked at it, and we tried to apply ice to it, but Ella said it hurt too much.

After a few minutes we decided to go the the ER and have x-rays taken. Henry said he wanted to go with as moral support. Currently, our accessible van is broken as the door with the ramp for entry isn't working properly. I backed the van out of the garage, opened the opposite door and put Ella's manual chair in the car. I then lifted Ella from her power chair and placed her on the back seat. Henry joined us and we were off.

When we arrived at the hospital we had to wait for a few minutes before they had a room ready for us. Once we were in the room things started happening fast. They immediately took an x-ray and provided some pain medication. As it turns out, the foot was fractured on the first metatarsal. 

The doctor tried to put her foot in a surgical shoe but it was too big. They decided to splint the foot and then we were to follow-up with our orthopedic surgeon on Monday. They gave us a prescription for some strong pain medication and we were on our way.

The next morning I woke Ella up to see if she felt like going to school. She was adamant about going despite the pain and discomfort. I got her ready and she was all set to go.

Up to this point we have been very careful with her foot as we transfer her from place to place. We are keeping up with the medication and doing all we can to help her feel comfortable. I must say, there's never a dull moment around the Casten household.

Henry (10), Ella (9) and Ava (12) on the first day of school (2019)

Ella's left foot with the fracture of the first metatarsal.

Sing a Song...(by Michael)

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 Fall, and made the "high" group of singers. She'll be a part of a group of kids singing their hearts out. Undoubtedly, she will make new friends while honing her singing skills.

In order to perform for an audience, all of the YNS members are required to wear matching outfits provided by YNS. Ella and I took a trip to the main office of YNS and did a dress fitting.  We found the dress size that fits her and it will be here soon.

This new endeavor will be a great experience for Ella. She'll have an extra-curricular activity like many of her peers and siblings have. She'll be able to make friends and do what she loves to do---sing! 

Ella being fitted for her YNS dress (July, 2019)

Hard to See the Light...(by Michael)

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 an electric reclining chair for her to use. This will help her get from a lying position to a sitting position without having to use her core muscles.

I know there's a light at the end of the tunnel but sometimes it's hard to see it. Lindsay's been in pain for years now and it's difficult to watch her continue to be in that pain. We thought everything would get better after the amputation of her lower right leg but that's not the case. She recently had the surgery for her left knee (meniscus tear) and, since it's the only leg she has to use for walking, it is taking longer to heal and gives her much pain. On top of that, she's dealing with the core pain with every movement she makes from the recent kidney surgery.  And she now has one more surgery to go through, as an out-patient procedure, to address the abnormal cells and tumor in her uterus.

I had the house to myself for two days and used the time to patch some holes in the walls, mow the lawn, and do a little power washing of the exterior of the house. Anything to keep things off my mind for a bit. But, of course, reality still sits there staring me in the face. I know what I have to do...take care of my family and make sure everyone's as healthy as they can be. 

The kids will be home from camp over the weekend and the house will once again return to its crazy self. There won't be a shortage of things to do on my part. Hopefully, by the end of the summer, we'll have all of this behind us and we can then move forward heading into Fall.

Potter and Ginny waiting for their mama!

Funny Spirit...(by Michael)

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 cancerous tumor (on her kidney) and 5% of her kidney removed. In August, she will have a third surgery to remove abnormal cells in her uterus and a growth that was found there as well.

We have run into some insurance problems with regards to approving the microprocessor foot for Lindsay. This piece of equipment is considered to be experimental and the insurance company denied it automatically. We are fighting this decision based on the following needs:

• Lindsay is young (38 years old); she has a lifetime ahead of her without a lower right leg.
• She has three active children under the age of 12.
• She has a daughter with SMA. This requires Lindsay to carry her, lift her, etc--and without the microprocessor foot, it will be very dangerous to do so, leaving complete care of Ella to Michael.
• She has a degenerating disc in her lower back. She has to use her legs to lift anything, including Ella, so as not to aggravate that disc; the microprocessor foot would be ideal for these motions.
• She's had four meniscus tears in the other leg's knee due to compensation for pain. She needs the microprocessor foot which will learn her gait, and in turn, will get her back to walking as she naturally would.
• She has a very active job directing the children's ministry programs at church.

We're hoping that the insurance company will see the need for Lindsay to obtain the microprocessor foot.

The kids have been acting out in response to all the stress in the house. They are fighting, bickering, and annoying each other above and beyond the normal sibling rivalry. The added heat in the house fuels the short tempers and they have been lashing out. We sat with them and had a family meeting. We had them list the positives and negatives about their life, right now, on sticky notes. We reviewed the negatives first and made a master list of repeated ideas. We talked about how each of us could help the others with the negatives to quell them. This is what they came up with:

• More parent one-on-one time with each of them.
• Respecting each other.
• Asking if behaviors and actions are "helpful" or "hurtful" right at the time of occurrence.
• Communicating positively (responding, not reacting).

We then went over our positives and had a good time talking about what makes us happy, comfortable, and respected. From there we listed (on sticky notes) one thing we each wanted to work on for the next week to help create a supportive family dynamic. We placed the "goal" sticky notes on the mantle so we would see them everyday. During our next family meeting, we'll review our mantle sticky notes and adjust accordingly.

Ella woke up at her usual time yesterday morning and was eager to get ready for the day. I rolled out of bed and took a shower while she played with the dogs on the bed. I took her into her room and dressed her and brought her downstairs. While administering her morning meds via her g-tube she looked at me and asked, "Where's your funny spirit?" I turned my head a bit as a dog does when they are curious and gave a little laugh. She smiled at me and I tickled her on her stomach.

Sometimes it takes the thoughts of a child to realize the complexities of life and how to deal with them. There's so much going on at our house and much of it causes stress and anxiety. Each one of us is dealing with the heat, the messes around the house, the needs and wants of others, as well as trying to make oneself happy. We're trying to get ready for surgeries, camps, birthdays (Ella's was June 10th and Ava's is July 5th), play dates, sleepovers, etc. 

I thought about what Ella had asked me and realized that a "funny spirit" can make all the difference in the world when dealing with so many obstacles. I think I'll add to my sticky note on the mantle..."have a funny spirit".

"Where's your funny spirit?" (July, 2019)

 

Neighborhood...(by Michael)

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 covered with a plastic bag because they were going to play in the sprinkler!! She had so much fun!

Usually, during the day, Ella will come home to go to the bathroom. Sometimes she brings her friends and other times they just wait for her! We're amazed at how understanding people can be and grateful we live in such a neighborhood where her needs are understood.

During the past week Ella (and Ava and Henry) attended Vacation Bible School (VBS) at our church. Lindsay is the director of VBS and puts months of work into the events of the week. Ella was especially excited this year because she would be one of the "older" kids in her group (groups are called crews). She loves playing with and taking care of kids younger than she is in her crew. 

There are a lot of activities at VBS; games, crafts, snack making, singing, movies, discussions, etc. Ella's crew leader was awesome in making sure Ella had access to everything she needed to feel part of the experience. Ella thoroughly enjoyed the week and said she'll miss her crew leader from VBS.

It's comforting to know that whatever Ella chooses to do...whether it is playing with a friend or attending a camp...there are so many people who show her compassion and acceptance. We are truly blessed to live in such a community.

Ella getting ready to play (June, 2019)

Chasing Dreams...(by Michael)

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 about her friends. She wakes up in the morning and tells me she has to be at a certain friend's house at a certain time. She does this so she doesn't have to worry about ringing the doorbell which might be out of her reach...if her friend is expecting her at a certain time then they'll be watching out for her. So far, she's been right on time--every time.

She often spends the day away from home. She has a Gizmo which is a little watch-like device that acts as a phone. She calls me every time she is going to do something new or go visit another friend. When she needs to use the bathroom she races home in her power wheelchair and let's me know she needs to use it...and I take her. During that bathroom time she tells me everything she and her friend(s) are doing. She is really polishing her social skills.

Yes, one of Ella's dreams is to get married and have children. The social skills that she is developing are all important to that end. She has to find ways for people to look past her disability and see her for who she is as a person. She needs to learn how to advocate for herself as she won't always have mommy and daddy to help. She needs to learn how to take disappointment well, so that it doesn't slide into her disability...where she could use her disability for blame. As she grows, so do her social skills.

Ella loves children. She is willing to play with any aged kids in the neighborhood. Each day she finds herself with different aged playmates. And she adjusts herself to that age. When with the younger kids she becomes their mother, taking care of them and teaching them things. When she's with same-aged friends, she adjusts herself to be present just as she is. When playing with older kids, she once more adjusts herself to communicate with them at their level. And when she's with adults she turns on her humor and polishes her sarcasm!

Ella may or may not get married and have children. But whatever she does she will continue to chase her dreams, even if that means chasing them down in a 400lb power wheelchair. 

Ella at a friend's wedding (June, 2019)