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)

Privacy and Dignity...(by Michael)

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 same way...we lift her from the toilet by the waist, arch our back a bit for her to grip around our neck and to maintain balance, then pull her pants up and place her in her wheelchair.  

•  Another way to do it is to scoop her (getting one arm behind her knees and the other arm behind her neck to lift) out of her wheelchair and lie her down on the landing of the staircase. Bending over her, we take down her pants and then scoop her from the landing and bring her across the hall into the bathroom to sit her down on the toilet. This requires a lot of bending and twisting on our part. With this method, if there are people in the house, she wants them to close their eyes and/or turn away so they don't see her half naked body as we go from the landing to the bathroom.

Lindsay already has a bad back with a degenerating disc so lifting Ella can aggravate that area. We do our best to use proper lifting techniques but that doesn't always happen. If our backs go out then we have a problem.

Fortunately, we had a solution (something we thought about doing when we first bought this house) to getting her in and out of the bathroom on the first floor safely--while maintaining her privacy and dignity. Our idea was to expand the bathroom into the adjacent hall closet. We could never afford to do this on our own so we decided to use the recent donation money for the job! Construction workers opened the shared wall between the bathroom and hall closet and expanded the bathroom size by approximately 15 square feet. In that expanded area we placed a modest dresser with a soft cover on top. So now, we simply (and correctly) scoop Ella from her wheelchair and place her gently on the dresser (which is waist high on us). We get her ready and then easily transfer her from the dresser to the toilet using only our legs to bring her down to it. We do the reverse when she's finished...scoop her from the toilet to the dresser, pull up the pants, and transfer her to her wheelchair. The workers also created a new hall closet on the opposite side of the new wall  (see pics).

We would like to thank all the people who have donated  money to us so that we were able to pay for this major bathroom modification that we've needed for years. Not only does this help us physically, it helps Ella emotionally as well--as she now has the privacy she needs and the dignity she deserves while getting ready for the toilet. 

Before (bathroom/closet shared wall is just to the left of the toilet)

Taking out the shared wall between bathroom and hall closet

New Hall Closet

New bathroom with private changing station (safety, privacy and dignity intact!)

Compassion and Generosity...(by Michael)

For kids, the world can be a scary place sometimes. When they witness bad things happening to others they often wonder why it has to be that way. 

Our own kids (Ava, Henry, and Ella) have had to watch their mother fight a battle against a rare and aggressive infection for four years. Then they had to be witnesses to her leg being amputated and all that comes with that. In addition to those events, they have to constantly battle against SMA each day.

On the other hand, they also get to witness the good hearts of people, in our Naperville Community (Church & Prairie Communities) and other communities, many people of whom they don't even know, entering our lives and providing a helping hand. They also witnessed family rallying around us. This experience teaches them compassion and generosity.

I work as a teacher in the community of Elmhurst, IL. I have been at the same school and the same grade (4th grade) for 19 years now. And when Ella was first diagnosed with SMA, the community rallied around us and threw a fundraiser that allowed us to buy a modified van for Ella. We are forever grateful to those who participated. 

When Lindsay lost her foot to the infection--and the community of Elmhurst learned about it--they once again rallied behind us and provided support. Parents from my class of 2018-19 put together care packages for our kids. So much support came flooding in from the Elmhurst Community that they had to present us with care packages over a period of time; every few weeks. These care packages included games, coloring books and coloring supplies, toys, snacks and candy, s'mores ingredients, and a new video game system. We were taken aback at the generosity of those involved in supporting us. 

Our family, church, and Prairie Communities also took hold of the opportunity to help us and offered meals, financial assistance, good thoughts and prayers, and neighborly help.

Ava, Henry and Ella have a lot on their minds these days. They wonder about the future of Ella and what that means for each of them. They inquire about what their mother will have to go through with two more surgeries coming up. They look forward to when Lindsay gets her prosthesis so she can walk without assistance. 

And even though some bad things have happened over the past four years, it's comforting for all of us to know that there are so many people out there ready and willing to offer support; whether it be via care packages, meals, lemonade stands, financial support, helping with medical appointment transportation, babysitting, or prayers and positive thoughts. 

Every bit of it helps. 

 Friends from Elmhurst Delivering Care Packages

Ella's Birthday Gift...(by Michael)

Lindsay and I sat in the doctor's examination room with our baby one-year old Ella by our side. The doctor was looking at some test results and was deeply engrossed in what he was reading. Finally he said that Ella most likely has Spinal Muscular Atrophy and that there's nothing they could do for her. He advised us to take her home and love her until the disease takes her away from us. We left the hospital devastated. The actual, official diagnosis of SMA came after genetic testing was completed...that day will live in our minds forever.

Ella became sick shortly after that visit with RSV (an upper respiratory virus) and ended up being hospitalized at Children's Memorial Hospital of Chicago (now Lurie's Children's Hospital). While we were at the hospital we heard that a prominent neurologist was going to be working there. We made a follow-up appointment with her. She showed us how to take a proactive approach to the disease and set us up with several machines and resources.

Eight years have passed and Ella is still with us. She will be turning 9 years old tomorrow (Monday, June 10th). Over the past eight years Ella has been through much. She has been hospitalized and undergone three major surgeries. She has worked really hard in her therapy sessions week after week. She's learned to maneuver a 400 lb power wheelchair and drives it better than most people drive their cars. She's thrives at school and continues to make friends. She cruises the neighborhood and always has a smile on her face.

When it comes to being independent Ella has made wonderful strides. She recognizes what she can and cannot do for herself; and when trying something new she always puts forth great efforts. She's smart, likable, and fun to be with.

Within the past few weeks Ella auditioned for and made the Young Naperville Singers that will start in the Fall. She is excited to have an extracurricular activity like Ava and Henry do, for herself. Since we know she'll be doing a lot of singing we decided to get her a karaoke machine for her birthday. We didn't have a lot to do over the weekend so we decided to let her open her birthday gifts a few days early. She tore right into them. She received books, a stuffed unicorn, several boxes of kids stick on nails, and the karaoke machine. Needless to say, the kitchen table is full of the gifts as the girls put the nails on and all of us sing into the karaoke machine. During more quiet times, she reads her new books. And, of course, she keeps her stuffed unicorn with her day and night.

On Ella's actual birthday she has to go to the doctor to get the rods in her back lengthened...a relatively easy procedure that is outpatient. They simply use a magnet on the outside of her back to lengthen the rods on the inside...she's really growing up! From there we'll go out for a family dinner at a place of Ella's choice.

SMA has been a tough road for us to handle. Many times we were less than confident in our ability to care for Ella. We turned to family and friends and began building a network of support that stands strong to this day. We learned all we could about SMA--from what causes it to the plan to cure it. We've been the fortunate recipients of fundraisers, lemonade stands, donations, and support for our whole family.

We started this blog to let people know what's happening, both far and near. To this day we have 478,865 hits! Thank you for taking the time to read our story...please feel free to share this blog as you see fit as a gift to Ella!

Web address to copy & paste & share: 

https://ellas-corner.blogspot.com/2019/06/ellas-birthday-giftby-michael.html 

Ava, Henry, and Ella...(by Michael)

Lindsay and I have three children...Ava (11), Henry (10) and Ella (8). They live a life that is quite different from their friends. Having a sibling with SMA (Spinal Muscular Atrophy) has weighed heavily on Ava and Henry's minds and their behaviors. We have talked with all three of them about the implications of Ella having a terminal illness and while they understand those implications they still have to live with the disease everyday. Often there is jealousy as Ella receives more attention than they do. There is resentment for having to help her with everyday tasks. There is anger and hostility surrounding the harsh facts of the disease. It's a lot for them to handle just in itself.

All three children have also had to deal with their mother going through significant health issues for the past four years. With each surgery we told them that we hoped it would be the last. This has proven to be untrue. They have gotten used to the foot surgeries, the recoveries, and the aftermath. But kids often keep their emotions to themselves and worry quietly.

When Lindsay had her lower right leg amputated the kids were scared; afraid of the unknown. They had no frame of reference to process the idea of an amputated leg. When all was said and done they rose to the occasion and supported their mother. They helped with things and took the light side of it, following Lindsay's lead. When others offered help through care packages, meals, and GoFundMe donations they were so grateful; their joy was infectious.

On June 4, 2019 Lindsay was diagnosed with an 80% chance of having Stage 1 Renal Cell Carcinoma (cancer). The doctor is going to remove the tumor and 5% of her kidney on July 8, 2019. 

The kids are scared. Once again, they really have no frame of reference to draw upon to process this news. They know that cancer is bad and they feel unsure. We spoke with each of them about how they feel regarding the two upcoming surgeries (the first one is fixing Lindsay's torn meniscus in her left knee and the other one is the removal of the tumor). 

I sat with Ava in the family room chair that can fit a child and adult together. I asked her how she felt about the upcoming surgeries and situations. She told me that she was fine with the knee surgery. I asked her how she felt about the cancer issue. Then she paused, put down her iPad, and scooted closer to me. She let out a sigh and wrapped her arm around me in the front. I squeezed her closer and gave her a kiss on the head. No words were spoken but I could feel her anxiety in the hug. I told her that it'll be fine. She shook her head and tightened her grip on me.  We sat in silence for a moment and then she picked up her iPad and continued playing her game. She's a quiet girl at times and right now she's burying herself in her technology. 

Lindsay had a conversation with Henry. She asked him how he felt about all of this and he replied that he was ok with the knee surgery but was "ish" about the cancer. Henry is a very affectionate boy and often wraps himself up in Lindsay's lap. He, too, tends to hold things in until they explode--usually in anger. He takes a lot of his frustrations out on Ella and blames much on SMA. He ends up storming away...retreating to his room to cool off. 

I asked Ella how she felt about Lindsay's situation. She, too, was fine with the knee surgery but hesitated when asked about the cancer. She took the point of view that they are going to get rid of it once and for all. She lay on the landing as we talked, her big brown eyes sinking deeply into mine. she said, "I think it'll be alright." Ella is the type of person who likes to talk about things. She gets this from the many conversations we've had regarding her own health. She's mature in that way beyond her years. When frustrated, she tends to bother Henry and Ava and then gets herself all worked up and cries. Sometimes I feel that this crying is more than just a reaction to a sibling rivalry, but more an expression of her emotions overall.

Each of our kids respond to stressors differently. Ava sinks into her iPad, Henry tries to spend time with friends, and Ella works on creating, games, and make-believe; she also is trying to expand her friendships. They all, however, tend to hold emotions in until they can't handle it anymore and they seek an outlet...anger, crying, indifference. We've made it a point to try to have family time together playing games or eating meals with one another. These times, though, are getting farther and farther apart as we also have to continue to run a household. Lindsay does as much as she can and is still adjusting to life with an amputated leg. 

As parents we are dealing with delicate psyches...all in critical developmental stages. We interject humor and seriousness, discipline and leniency, raw facts and hypotheticals. Each child of ours comes to us with their own view of the world...and through the thick of what's going on we try to make what they see coincide with how they feel. Often the two are quite different.

Henry (10), Ava (11), and Ella (8)    Summer, 2019

Overflow...(by Michael)

Yesterday (6-3-19) I waited at home while Lindsay went to see her orthopedic surgeon to have the 28 staples removed from her amputation incision. I was hoping all went well and waited anxiously. She returned and the first thing out of her mouth was that she needed surgery on her left knee. The meniscus in her knee had torn once again from compensating due to pain. We knew this was inevitable but still cringed at the prospect of yet another surgery. Her staples did come out without any incidence. The knee surgery has been scheduled for this Friday, June 7th. It should be a routine procedure with a comparatively easy recovery. Performing the surgery now will allow for her left knee to be fully healed and strong for when the time comes to get her prosthetic leg. 

We still had an appointment today, on June 4th, with Lindsay's urologist regarding the mass found accidentally on her kidney. This mass was discovered after she had a bad reaction to the hyperbaric oxygen pressure chamber treatments and they did a CT scan of her torso (followed by an MRI to further investigate the kidney mass). Finding this mass was a blessing in disguise, if you will.

Lindsay and I waited in the examination room of her urologist ready to take in whatever news he had. He entered and gave his greetings and we got down to business. The doctor pulled up the MRI scan that was taken two months ago and showed us the mass that was sitting right on the top of her kidney. He spoke a little bit about it in terms of its size and location. He then gave us three choices:

• We could wait and watch it to see what it does.
• We could have a biopsy done to see if it is malignant or benign.
• We could have the mass removed in its entirety.

Lindsay grabbed my hand as we went through each option. Waiting to see what it does didn't really appeal to any of us. Since the scan was two months old we don't really know what it has done since and waiting would cause unnecessary worry. We considered a biopsy for a moment until the doctor told us that even a biopsy could be diagnostically inconclusive. And furthermore, whether it is malignant or benign, it would still need to be removed. The last option seemed like the most logical choice. The doctor recommended to remove the mass in its entirety.

Upon further conversation the doctor let us know that he felt it had a 75-80% chance of being Stage 1 Renal Cell Carcinoma (cancer) based on its location and presentation. Lindsay squeezed my hand tighter and tears started welling up in her eyes, as well as in mine. I squeezed her hand, rubbed her back, and offered her a reassuring look. The doctor told us that it would be a relatively easy arthroscopic procedure. 

We left the doctor's office with our fears confirmed. Earlier, we entertained the thought of a cancerous tumor but didn't really want to believe it. We opened the papers that explained Renal Cell Carcinoma and stared at the drawings of her case on the printed picture of a healthy kidney. The doctor's plan is to remove the tumor and about 5% of her kidney at the site.

Another surgery to go through. Another recovery to endure; about 4 weeks. 

After the surgery, assuming the pathology reports are negative around the border of the mass, Lindsay will have annual MRI scans to monitor surrounding systems for any signs of malignancies. 

The kidney surgery has been scheduled for Monday, July 8th, while the kids are at camp for the week. Lindsay will have to stay overnight at the hospital for a night or two. 

Our plates are full and yet another serving has been added---our plates overflow.

To help offset medical expenses please follow this link to our GoFundMe Page

She's Amazing...(by MIchael)

Before Lindsay had her lower right leg amputated (due to a four year long foot infection) we did a lot of research about amputation procedures and aftermath expectations. One of the things that we found was that there is usually a period of time where the amputee grieves for the loss of the limb. But this grieving was more prevalent in those amputees who lost a limb unexpectedly. Lindsay had an advantage as she had time to process the idea of an amputation.

It's been 23 days since her amputation (as of 6-2-19) and her recovery is going smoothly. She is extremely mobile using her wheelchair and her walker. And she is doing things that we never thought she'd do in such a short time frame. 

She's amazing...with three kids under the age of twelve dwelling in our house and the end of the school year upon us the house was quite chaotic and messy with school supplies and school work from the year strewn all over the place. Our kitchen table was full of "stuff" and I was overwhelmed as to where to put it all. I started with a few things and found a place for them but there was still a pile looming there and elsewhere on the first floor. When I woke up this morning and went downstairs, the kitchen table was completely cleaned off and there were fresh flowers as the centerpiece. Lindsay had also decluttered the entire first floor on her own the night before.

She's amazing...during the last few weeks Lindsay has been sleeping on the living room couch so she could be present in the morning to send the kids off to school without having to go down the stairs. Once summer started she moved back upstairs to our bedroom. That last day of school she took the bedding from the couch and washed it all...by herself! 

She's amazing...she has employed a contractor to install extra stair railings so she can go up and down the stairs in the house (both the upstairs stairs and the basement stairs). She can now be free of a crutch when she travels the different levels of the house...and it's safer for her as well. 

She's amazing...in order for her to care for Ella when the time comes she knew that there needed to be some modifications completed in our first floor bathroom. She quickly planned these modifications, contacted a contractor, and put into motion the necessary timeline for the modifications to occur. We will be expanding the bathroom into the adjacent closet in order to put a changing table in there for Ella. Lindsay has a degenerating disc in her back and bending down on the stair landing to get Ella ready for the toilet would wreak havoc on her back (not to mention mine). 

She's amazing...from her computer that now resides in the dining room and a floor workspace she made in the same room, she is getting ready for VBS (Vacation Bible School). She is making props, coordinating staff members, and compiling registrees. She is running her job at church from home, making sure everything is working and running in the way she wants them to.

She's amazing...not only is our house filled with three kids and their friends, we also have two young dogs and a bunny. The cage for the bunny is in the corner of the living room. I walked in from school one afternoon and there was Lindsay, on the floor, cleaning out the bunny cage and getting everything nice and neat. 

She's amazing...taking a shower with half of your leg missing can definitely present a challenge and also be quite dangerous. Lindsay set up our master bathroom with organization shelving and a bath chair that allows her to be independent in taking a shower and getting herself ready for the day. She has everything at her fingertips and works the wheelchair in the bathroom like a pro.

She's amazing...amputation of a limb can be a horrific endeavor. Lindsay decided to take the light route instead and created t-shirts (using iron ons) with sayings that poke some fun at amputees ("I always leave my leg in my other pants", "3 out of 4 isn't bad", "I'm stumped", etc.) She has the attitude that if you can't laugh at yourself then who can you laugh at?

She's amazing...I have a rock in my classroom that says, "Attitude is Everything" that was given to me by a former student. I use that saying often with my class. Lindsay embraces that saying as she virtually skipped the grieving stage of the amputation...oh sure, there were and are times when the concept of not having a foot weighs heavily on her mind, but she talks it out with herself and sometimes with me in order to get herself back on track.

She's amazing...I watched my wife battle a nasty foot infection for four years. The pain, discomfort, emotional and physical toll were often too much to handle on our own. We turned to others for help and the relationships that Lindsay and I forged over the years became evident as people stepped forward during that time to offer help. And more so, when the amputation took place, other people came forward...giving us the help we needed to traverse this part of our life. 

She's amazing...for the past four years the infection of her right foot was all-consuming in our life. It dragged her down, took its anger out on her physically, and made life a terrible mess. Instead of looking at the amputation as a loss of a limb she looked at it as a loss of the infection. She thrived physically and emotionally after the amputation, grabbing hold of her life again.

You're amazing...all of our readers, those subscribed to our blog, those who keep in touch through Facebook, those who happen to come across our blog in a search, those who are part of my teaching community (Elmhurst), and those in our Prairie community...all of you are amazing in that you have committed to thinking about us, praying for us, and supporting us in so many ways. She's amazing because you're amazing.

This time in our lives is definitely a challenge...emotionally, physically and financially. So many people have come forward to help with our CareCalender and our GoFundMe Campaign. So many have come forward to support our kids with care packages full of toys, books, and snacks. So many have provided meals. So many have come forth to offer their thoughts and prayers. So many have come forward to help us financially as medical and equipment bills pile up.

It's honestly a testament to how amazing Lindsay really is...