Tuesday, November 14, 2017

Recent CMN Happenings

Click this link to hear our Children's Miracle Network advertisement, which is set to "Here Comes the Sun".
CMN Radio Ad

The Radiothon was such an exciting time for our family.  Madelyn's family members, friends, and school support staff showed up to answer phones during her hour.  And wow, were they successful!

Thank you to everyone who called in to donate!  We had 37 calls and raised over $3600 in her hour.

Team Maddie

Summit Elementary Staff
Maddie's Miracle Phone Bank Team

Up next for us is Madelyn's Hero Story, which will air on WXOW at the end of November.  We've been working on this with Dustin Luecke and are excited to share all the great things happening for Madelyn in our community.  

Thanks for all the support :)

Sunday, October 1, 2017

When the Bright Side gets harder to find

This has been a rocky start to our school year, and I have to say that I'm struggling to see the bright side of things.  As I write this, Madelyn is laying on the recliner next to me, hooked up to oxygen after a Sunday spent at the hospital.  These occurrences have somewhat become our normal.  In the 30 days of September, Madelyn has had 6 appointments at our local medical facility.  She's had 4 trips out of town for her specialty care.  We've become used to always being on the go after work and on our days off- a trip to St. Paul for a scoliosis brace, sure!  A trip to Minneapolis for an orthopedic procedure, why not!  Another trip to St. Paul for the immunologist, no problem!  That's our job as Maddie's parents- to make sure she gets the best care possible, wherever that may be.  It may be exhausting hauling a medically fragile child on a 6 hour round trip car ride just to see a doctor for an hour, but we've made it work. 

What gets challenging for me- the highly organized, always trying to be positive, constantly scheduled mom is the unplanned events related to Maddie.  This weekend was the Oktoberfest parade.  Maddie was sick with a cold at the start of it, and by that evening she was seriously sick.  The next morning, we're meeting with our doctor about respiratory supports and the pros and cons of hospitalization as it relates to her palliative care plan.  We're home now, but that doesn't mean she's better. That's something to get used to too.  We'll take over providing respiratory treatments and monitoring her oxygen.  I'll take off work tomorrow since Greg has taken off a lot these past few weeks.  We'll get through it. 

Seizures.  Another challenge for us.  They show up at the worst time.  Madelyn has had two prolonged seizures at school this month.  Each time an ambulance had to be called.  And each time, I was at work, in a meeting.  Getting called by your child's school to hear that an ambulance is coming for your daughter is terrifying.  What makes it worse is the logistics- telling your coworkers you have to leave, trying to find your keys, getting through traffic without getting in an accident, and making it to school to get to your daughter's side without totally falling apart.  One time is what you think of as the worst case scenario.  And when it happens again, it's hard to process.  Worst case scenarios can't keep happening, right?  I really don't wish this aspect of our life on anyone.  There are many amazing aspects of being a special needs parent, but this is not one of them.  Madelyn has recovered, and she will forget it happened.  But Greg and I won't.  We won't forget what we were doing when it happened or how we felt.  We won't get over the fear of it happening again, and furthermore the fear of what if she doesn't recover next time. 

We have absolutely no tie to St. Jude Children's Research Hospital.  But, like the rest of you, I see their commercials and I remember the phrase: "Be thankful for the healthy children in your life and give to those who are not."  For whatever reason, that phrase comes to my mind frequently.  And that's what I'll end with here.  Be thankful for the healthy kids in your life!  Send positive thoughts and prayers to those who are not.  Give us your patience.  I know that this will pass and we'll get through it (hey Madelyn is almost 4 years old!).  Help us remember the bright side. 


Friday, August 4, 2017

Giving Madelyn a Voice

Over the past year, I feel that I have been given a platform and duty to give Maddie, and kids like her, a voice.  As I shared one year ago, I was asked to write an article for Minnesota Epilepsy Group and Children's Hospital of MN.  This was a wonderful opportunity.  In January 2017, we were approached by Children's Miracle Network as Madelyn was asked to be a hero and brand ambassador for the next year.  Again, this was such a gift to our family.  Last week, I was extremely honored and surprised to be asked by Ron Kind's office if I would speak at a press conference with him regarding healthcare accessibility and affordability, as it pertains to children with special medical needs.  Needless to say, I was shocked.

We've done a few CMN events so far, and I have to say that I leave each event feeling more empowered than the last.  I give our family's speech in front of the 100 or so people at said banquet, and I feel supported.  I am becoming more and more comfortable sharing Madelyn's story.  And, I am also seeing the good that comes from it.  There is such a need for people with disabilities to be better understood, to be included, and to be supported in society.  After each speech, I have had community members approach me thanking me for sharing our story, and more importantly, thanking me for the greater understanding that they now have.  I can literally feel people's compassion and acceptance grow in that room.

Thank goodness I had had these positive CMN experiences as my foundation to public speaking.  When a congressman asks you to speak at a press conference, you don't say no.  :)

Below is the 23 minute, unedited press conference.  I speak from 7:10-10:08 if you want to skip ahead.

I am so thankful for these opportunities, and I look forward to what is it to come.  I'm confident that this won't be the last time I climb my platform and give Madelyn a voice.  

Thank you for watching!

Monday, May 15, 2017

She will teach them....

Madelyn is wrapping up her first year of school as an Early Childhood student. Last fall, her extensive IEP was written.  One of the therapists on her team wrote "besides her above mentioned challenges, Madelyn also has many gifts".  She went on to write "she will teach them about patience, gratitude, love, and compassion".  This was written in reference to Madelyn's impact on her classmates.  However, anyone who knows Madelyn would agree that she teaches this to everyone she meets.  This was one tiny section of a massive document, but it has stuck with me all year and I constantly find myself repeating it in my head. That sentence sums up how Madelyn has shaped us as parents and as people.  That sentence also is a beautiful description of how she's been received by her classroom and school community.

As a parent, it's hard sending your kid to school.  It's especially hard when your child is medically fragile and can't tell you how her day went.   But, in true Madelyn fashion, she has shown us that she can handle it.  She has blossomed over these last several months.  She's smiling and laughing at her teachers.  She shows excitement at school assemblies.  She drives her Mini Cooper around PE.  She participates in crafts, listens to stories, and enjoys music time.  She's watching her peers and taking it all in.  All we've ever wanted is for Madelyn to feel loved at school and to be accepted.  And she is.  There are obvious challenges, but that therapist was right.  She has taught her classmates and her staff about patience, gratitude, love, and compassion.  And we become more proud of her each and every day.

At a school assembly

Using scissors for the first time!

Planting her Mother's Day gift
Not impressed with Dr. Seuss day
Driving around PE class

Painting with her classmate

Monday, April 25, 2016

It takes a village...... of specially trained people

As we near the end of our time as a family of 3 and look forward to July when baby #2 will arrive, we've started to do some reflecting and planning.  Like every mom, I've wondered "when will I go into labor?", "where will Greg be?", and most importantly "who will watch my other child?"  Every parent has this to worry about, but for us, it's an even more loaded question.  I had started to make some tentative plans for Madelyn, and had plans to write up an instruction manual, if you will, of what she needs in a typical day.  I had plenty of time.... July is forever away!  Well, last week it became urgently clear that we need to have that plan written now.

I woke up not feeling well last week and ended up asking our former nanny to meet me at the clinic- Maddie had a doctor appt already scheduled for that day and she's my priority.  Like most moms, I thought I'd power through the morning, ignoring my own issues, and would be fine.  Our nanny would be there to help with Maddie if I needed it.  As the morning progressed, I ended up feeling much sicker and found myself in the OB clinic. The whole time I was thinking, "what is going to happen to Maddie?".  Greg was an hour and a half away for work.  Thinking we were just going to the clinic for one appointment, I hadn't packed any medications or tube feeding supplies for Maddie.  As I lay hooked up to the fetal monitor, my mind was focused on getting help for Madelyn so she could have her needs met at home.  It was then I realized that since I am currently a stay at home mom, I've also made myself the day nurse, the overnight nurse, the nanny, and the Madelyn administrator of the house.  This is a problem when that one person becomes quickly ill.  We are fortunate to have both sets of grandparents living in town; however, neither have cared for Maddie without my explicit instructions of how to use the feeding pump and what medications to give and when.  And at that moment, I didn't have the time or ability to write out the plan I would normally leave for them or a sitter.

Enter my best friend.  If something were to happen to me, she would be the one to know what to do for Madelyn, without my instructions.  But, it was a Tuesday morning and she was at work.  I sent her a text about what was going on, and without me asking, she said she would be leaving work to come to the clinic.  She met our nanny in the lobby and took over with Maddie.  She called her husband, he left work, and he picked up Maddie, along with her feeding instructions, and took her back to our house.  Maddie was taken care of.  My friend waited for me and we were both relieved to know that everything was fine with baby #2.  Greg and I couldn't be more grateful for this couple and the friendship that we have.  However, this incident made me realize that we need more people in our village who are "trained" to take care of Madelyn.  She's not the type of kid who you could just make a PB&J, turn on a Disney movie, and wait for the parents to come home :)

All is well again in the Payne house.  Maddie is bouncing back from a sinus infection, and baby #2 is growing and kicking away.  We now have a sense of urgency in making sure the people in our lives know how to care for Madelyn.  Next weekend, we'll be having both sets of grandparents, as well as our super hero friends over for a Madelyn training session.  As I write this blog post, I'm also writing an ever-growing list of "things you'd need to know with Maddie".  I'm sure the hand-outs will be top notch.  In the about me section of the blog, I wrote that I wanted to document our journey as parents of a special needs, medically complex child.  We are continuing to discover challenges we didn't know we'd face, but also moments of joy we didn't know we'd celebrate.  This past week has been a bit of both.

As a quick plug for future childcare- if anyone knows a nursing student, retired nurse, someone in a related field, please send them my way!  This mom is planning to go back to work half-time in November, and Madelyn is yet to show any interest in school psychology :)  We're always looking for people to add to our village.

 Who wouldn't want to care for this sweet girl?
"What?! I've only got 3 months left as the only child!"

Monday, February 29, 2016

4 months without seizures!

I've been wanting to write another post and have been struggling with what to talk about.  Would a post about epilepsy be interesting to people who have no personal connection to it?  Well, my dear friend and fellow blog writer said to go for it ;)

As I recently posted on Facebook, Madelyn has not had a seizure in 4 months.  This is HUGE for her.  Prior to this, a typical day for Maddie could include five, 20 minute seizure clusters.  That is a lot for one little body.  Our life had become wrapped up in seizure management- watching for signs of one to start, timing its duration, questioning when to intervene, etc.  We carried our Diastat everywhere we went, just in case.  Our two babysitters had constant reminders from me of what to look for and what to do.  Complex partial seizures can be hard to spot, but we, along with our close circle, got pretty darn good at recognizing them in Maddie.

I remember starting in the school district and undergoing the required medication and health safety training.  My goal was to get that checked off my to-do list, and move onto something "more relevant" to what I would actually be doing everyday at work.  Little did I know, that I would some day be able to teach that seizure portion of the training in my sleep.  Diastat seemed scary and foreign at the time, but now it's just like a pen or chapstick hanging out in each purse and diaper bag we carry.

In my first blog post, I wrote about Madelyn starting a new seizure medication which resulted in a 2 week stay at Children's Hospital.  It essentially sedated her to the point of resembling anesthesia.  Well, fast forward to now, and that same medication is keeping her seizure free...... and conscious.... most of the time ;)  I stay in constant communication with our neurologist's nurse.  We talk weekly about dosing, noticeable behaviors, sleep time, awake time, appetite, etc.  Managing her seizures is not easy, but with hard work, it has paid off.  There is no feeling like being on an airplane or in a crowded restaurant and knowing that your child is about to have a seizure and there's nowhere you can quickly go and nothing you can do about it.  We don't have that fear anymore, and that makes all the work/appts/travel/hospital stays worth it.

I am shocked by how many page views my first blog post has had.  The ticker currently reads 2,544 views.  Because of this, I think it's important that I share these experiences.  I am in no way an expert in children with complex medical needs.  But, I've gotten to know quite a bit.  The most crucial thing I've ever done for Madelyn is to get a second opinion.  Locally, options are very limited in pediatric specialty providers.  I used google to find our current neurologist and epilepsy treatment center.  And, I really feel that it has saved Maddie's life.  Our pediatrician had told us that Maddie couldn't go on having 5 seizures per day, eventually something terrible would happen.  It's not sustainable.  But, there was no one here who seemed to be able to help.  Thank god for the internet because that's how I found Minnesota Epilepsy Group.  If you are even remotely curious, I would suggest doing a quick search of their website, .  This clinic is comprised of the leading neurologists and epileptologists in the country.  They are the only Level 4 epilepsy treatment center in the Midwest, and they just so happen to be less than a 3 hour drive from here.  I can't convey how good it feels to be with a medical team that is the best at what they do.  I could go on and on about the benefits of working with this team.  But I'll leave it where I began.... Madelyn hasn't had a seizure in 4 months.

If you or someone you know wants more information on our seizure experience, please contact me.  I feel so passionate about sharing this.  We couldn't accept that Madelyn having uncontrolled seizures would be a part of our "normal".  And now it's not.  This may not last forever, but right now, we'll take it and enjoy the calm.

Sunday, September 20, 2015

Where do I Begin?

If you've clicked into this, you probably know a little bit about me and my family.  But, please read the "About" page before reading on.  This platform was suggested to me by a friend as a good way to share what's happening with us.  Many of you probably see my posts and pictures on Facebook. And many know we were recently at Children's Hospital in St. Paul for two weeks.  You may be thinking "why isn't Sarah back to work?"or "Madelyn must be better now that they're home".

This is one of those posts where it's like where on earth do I begin?!  Two years is a short time, but it is also a LONG time in our family.

I am choosing to write this blog partly as a way to protect my heart and conserve my emotions.  It is very difficult to have to repeat the same heartbreaking story over and over to each concerned and caring person.  It's painful to see people's reactions.  It's anxiety-provoking knowing that the question "how is Madelyn?" will be coming.  Thank you to our dearest friends and family members who have been with us for this journey and have had to face this head-on.  Because of you all, I'm able to feel supported and empowered by writing this.  Here it goes.....

Madelyn was diagnosed with Congenital Cytomegalovirus (CMV) at 5 months old at our local hospital.  It explained her hearing loss and developmental delays.  It was traumatic to learn of, but it was also a relief in that it was a static event.  She would be behind, but we would help her progress.  She wouldn't get sicker and it wouldn't get worse.

In January of this year, Madelyn began having seizures.  She would have up to 5 clusters in a day, lasting up to 20 minutes each.  She never lost consciousness.  She bounced right back when it was over.  It was scary, but we felt manageable.  We began various treatments at our local hospital.  One treatment involved us giving her an injection in her thigh every night for 6 weeks.  Nothing worked.  So, I began looking into second opinions.  I came upon the Minnesota Epilepsy Group.  They are a group of Epileptologists and are the leaders in epilepsy research and treatment.  I got Madelyn in for an appointment in June.  We were so impressed and so hopeful.  At the beginning of August, Madelyn began a new medication.  On the 2nd day of medication, her seizures disappeared.  It was like a miracle had happened.

However, that morning, I couldn't wake her up in her crib.  She was breathing but it was like she was sedated under anesthesia.  She was admitted to our local hospital and monitoring by our neurologist in St. Paul was done via phone conference with the local doctor.  On Sunday of that weekend, the decision was made to have Madelyn transferred via ambulance to Children's Hospital in St. Paul.  Minnesota Epilepsy Group manages the care of epilepsy patients in this hospital.  This is what began a 2 week, emotionally-draining hospital stay.

Madelyn had every test under the sun done to determine what sedated her.  It was basically a "rule-out" process. She was tested for meningitis, encephalitis, stroke, aneurysm, West Nile, Lyme's Disease, etc, etc.  It all was negative.  All of this testing meant that practically every medical department was involved in Madelyn's medical care.  Because of this, she really received a very thorough and comprehensive evaluation.  One week into the hospital stay, the medical team sat us down and explained that they felt Madelyn was misdiagnosed at our local hospital when she was 5 months old.  They explained the characteristics of Congenital CMV and discussed how it was not an appropriate diagnosis for her. They did further lab work and confirmed that Madelyn did not have Congenital CMV.  It was a jaw-dropping moment for Greg and I.  The past 17 months have been us learning about Congenital CMV- what therapies worked, what were the outcomes, what possible needs would she have in the future, etc.  We also were back in that place of uncertainty.  What has caused Madelyn to be the way she is?  Why does she have hearing loss, developmental delays and epilepsy?

The good news was that Madelyn woke up.  She became more like herself.  The doctors determined that she had a UTI and ear infection.  And when the new seizure med was added, it was just too much for her little body and knocked her out.  Once she got on antibiotics and the seizure med dose was tweaked, she was fine.  She had a minor surgery to have tissue removed from her airway to help with breathing.  She was recovering well.  All great news, right?

Our world changed at the end of our 2 week stay at Children's.  A geneticist, neurologist, pediatrician, and epileptologist came into the room to talk with us.  They wanted to reiterate that Madelyn never had CMV.  But, they also wanted to tell us what was happening.  The team feels that Madelyn has a neurodegenerative condition, likely resulting from a gene mutation at conception.  Time stopped when they said that the likelihood of survival was not high and we should prepare ourselves for what the future may hold.  Then, the palliative care team met with us, so that if and when home nursing services are needed, it's already arranged.

There's no timeline and there's no crystal ball.  But, this is what we're coping with right now.  We are trying to enjoy each and every day with Madelyn.  We are finding joy in every smile and every snuggle.  She is the biggest blessing to our family and we are so grateful to be her parents.

Writing this post is like a release for me.  All of the "how are things going?" and "let's meet up for coffee" texts from all of you have been so kind.  Sharing this individually with each person was a task I couldn't bear to take on.  This post has allowed me to put the information out there.  Thank you for reading.  Thank you for supporting us.  And please keep praying for Madelyn.