Labor Day Scare

Labor Day weekend brought us a scare. 

At the ER

On Sunday morning, Connor had a hard time waking up and his lips were white. He was with it enough to sit up and indicated that he was hungry and thirsty. He was able to drink and eat, but still wasn’t himself so we headed off to urgent care. They did a number of tests there include taking his blood sugar which came back at 350. It shouldn’t have been over 180. 

Even thought Connor was much more himself about half way through our time there, they sent us to a nearby pediatric ER The ER drew blood and took a urine sample.  The blood draw is often a bit more accurate for sugars than a finger prick. This time the number was 474. 

As Connor sat on the bed, happily watching Thomas the Tank Engine, the ER doc shared the results with me and said Connor most likely had diabetes.  They were admitting him and a specialist would be up to visit us soon to go through all the protocols that would now be a part of our life.  I broke down in tears and she left the room.  I just couldn’t imagine adding one more hard thing to our life. Connor reached for me when he saw me crying. I love this little boy so much and hate all the crap he has to go through. I hated the idea of having to prick his little finger six or more times a day and then injecting medicine into him just so his body would do what it was supposed to know how to do.

Getting settled in the hospital room

After several minutes of my brain swirling out of control, the doctor came back with a puzzled look on her face. She said more bloodwork came back and his hemoglobin (A1C) was completely normal. Usually that is the defining mark of diabetes and without elevated levels there it was very unlikely he had the disease.  Relief rushed through my body. This meant, however, that they didn’t know what was causing Connor’s dangerously high blood sugar levels. We were admitted to the hospital and eagerly waited for the doctor to come and share more. This new pediatric doctor was also a little puzzled, but said that she had seen a few times before in her career when a cold virus (like the one Connor had been battling for 10 days) could cause high blood sugar levels. They wanted to keep Connor for 24 hours for monitoring and more tests.

Loving the entertainment

The next few hours included book reading, Disney Jr watching, finger pricks, Sissy performing dance numbers, taking vitals and eating pancakes. Brent and Clara headed home and Connor and I settled in for the night.  He was such a trooper.  Every two hours, the nurse would come in for one test or another.  Several times during the night, the IV alarm would go off because Connor would have tossed and turned enough to kink the tube. It was a hard night.

In the morning, his blood sugar was low (50) and so we got food into him as quickly as possible. The doctor came later that morning and while they were still stumped over what caused the elevation in blood sugars, they were sending Connor home. We were glad our hospital stay was only for a night. I thought about all the other special needs families we know who spends days, weeks even in hospitals each year. I’m not sure where they find the strength for that kind of life. One night was more than enough for us.

Smiling because he gets to go home and
showing his bandaid

We followed up with a pediatric endocrinologist after the hospital stay and he basically said the same thing – didn’t seem like diabetes, hopefully it was just the virus. Once Connor gets over his cold, probably in early October, we have to go in for a three hour glucose test and that will give him a fuller picture of the issues at hand.

Specific prayer or good vibes requests for the glucose test to show nothing alarming.

Summer 2018 updates

Goodness. It’s been a while. Not for lack of things to share, but more about the craziness of my job the last few months and the hustle and bustle of life as the Beck Dean family.

So here’s the shortest version possible of the last few months…

This winter, Connor was diagnosed with Autism Spectrum Disorder. I took him to our amazing physiatrist, who is also a development pediatrician, to see if he would qualify for the diagnosis because we desperately needed behavior therapy. Without having to stretch the truth at all, she confidently diagnosed him with ASD. This new diagnosis does bring some clarity to some of the quirks Connor exhibits.

His new diagnosis kicked off a five month process to find a behavior therapy place that would take our insurance, could work with Connor and would be flexible with treatments. Usually behavior therapy happens for 20+ hours a week and with both of us working and wanting to keep Connor in kindergarten, it would tough.  We finally found a place and in May they started seeing Connor a few hours a week at day care.

Getting so much better at using his talker!

Once school ended, we decided to have Connor do center based therapy with them three full days a week. This decision was tough for a few reasons, one of which was certainly the cost.  With insurance paying 80%, we were still looking at $500 a week. I share not to gain sympathy or solicit help, but rather as a glimpse into some of the realities that families with special needs kids face. This cost is on top of three 45 minute therapy sessions at Easter Seals and almost weekly doctor appointments with one specialist or another. Because of the high costs throughout the year, we will likely not pay $500 a week for the whole summer as we will have met our family out of pocket cost of nearly $8,000. $8,000+ on medical expenses in the first seven months of the year. It’s hard to say that and not get a little queasy in the stomach or think of all the things we could be doing with that money instead. But it’s also our family norm. Since Connor was born, we have rearranged our middle income salaries to accommodate our little guy and his many needs. We're thankful we have the funds to provide Connor the care he needs even if that means we cut back on our "wants" a little. That’s what you do as parents, right? Make it work.

And the reworking of needs and wants are usually worth it. Over the summer, we saw some remarkable growth in Connor because of this new therapy center. Most markedly, he started using his talker more. He joined in conversations, strung words together for phrases and sentences, he argued with me when he didn’t get what he wanted. :) The therapy center is also helping us work through behavior issues we are still having at home around eating. I’m hopeful we will see improvements in the next couple of months.

Connor loves swimming and playing in the water.
He'd go to the pool every day if we could!

A hard choice lay before us as the start of the school year approached. Would Connor start first grade at our neighborhood school or would he go full time at this therapy center? I didn’t want to pull him from school, but I also didn’t want to lose any ground we had gained with therapy.  Luckily both the school and the center agreed to a joint program. Connor goes to first grade for 4.5 hours and then to therapy for 3.5-4 hours. He’s a part of the special ed classroom and a general ed classroom at school and that seems to be working out beautifully.  He is getting the special attention he needs, but is also being challenged academically.

 Right before the start of the school year, Connor got his new wheelchair. It is pretty much like his old one which was a hand-me-down from a great charity organization in Chicagoland.

First day of school!

On August 15, Connor started first grade and Clara started seventh grade! Both love their teachers and are enjoying being back with peers. Connor loves riding the bus and Clara has joined a service club at the middle school.

In August, Brent and I started seriously talking about and researching accessible mini vans. Both of our vehicles are 11 years old and we want to make a new vehicle purchase when we want to and not feel rushed into a decision because one of the cars died. It’s also becoming increasingly difficult to heavy-ho Connor and his wheelchair into our cars. A gently used accessible van is around $50,000 so I have begun to investigate different grants that we can apply for. I hope to do more of that in the weeks to come and have success in applying!

Loves it when sissy takes his picture
with filters

More soon. Prayer and good vibe requests for Connor to continue to make progress at therapy and for grant applications to be approved for an accessible vehicle.

 

Sissy Saves the Day

Connor was invited to a friend’s birthday party for the first time recently.  A little boy from his kindergarten class invited him and although we were skeptical he would enjoy it (it was at one of those bounce house places), we RSVPed yes.  Who knows when the next invitation would come?

Brent agreed to take him to the party so I could take Clara and make good on a promise from her birthday. It was about 15 minutes into the party when the first text came through: “This is going to be a disaster.”

I asked if we should come over thinking Clara could maybe get him to enjoy the party a bit more.  Brent said yes, so Clara and I ditched her plans and headed over to the bounce place.

We walked in and I went into sensory overload. Between shrieking children and the fans keeping the bounce houses inflated it was very noisy. It was also super warm in there.  We found Connor and Brent in the back. Connor seemed happy enough watching his classmates run around, but we were determined he wasn’t going to just sit there and be an observer.

  

Clara climbed into the bounce house and Brent heaved Connor up the slide to her waiting arms. They bounced a little in the house and then she took him to the slide. We spent the next 45 minutes moving from one bounce castle to the next repeating that pattern.  Clara climbs in, one of us heaves Connor up the slide, they giggle and bounce a little and then slide down.  Twice, kids from his class came to bounce nearby or talk to Connor and he loved that.

When it was time for food and drink, both kids inhaled pizza, juice and cupcakes. After the snack, some of the other kindergartners headed back out to bounce more, but the four of us had reached our limit. We thanked the mom, said happy birthday to the little boy and stepped outside into the cool, fresh air.

We had survived a bounce house birthday party.  It took four of us, but we did it.  Well, really Clara did it. Without her, I don’t think Connor (or Brent or I) would have made it much longer at the party and certainly wouldn’t have had as much fun. She makes everything fun, everything possible.

Only 49 days?

Written February 19, 2018

We’re 49 days into 2018 and it’s felt like a whole year.  There have been more doctor appointments, fun moments, dramatic tears, exhausting days and questions without answers than 49 days can possibly hold.

Connor & Ariel

The good stuff has been really good.  We had a great family trip to Disney World. Outside of a side trip to urgent care for extreme constipation, Connor had an amazing time. He was such a flirt with the princesses they all wanted to take him back home to their castles. He braved a couple of rides, but mostly just loved meeting the characters and seeing the shows.

The drama at home, mostly around Connor and meal times, has escalated to a point where we feel desperate for answers.  We’re waiting for our insurance to approve behavior therapy in hopes that will help.  We’re also considering inpatient treatment and medication. One of Connor’s physiatrists said recently “You all can’t keep going like this” and she’s right. Connor has started scraping the back of his head and pulling his hair when he gets mad. Brent and I are exhausted, frustrated and just emotionally drained after every meal.  And poor Clara just eats as quickly as she can most nights, so she can be excused from the table.  When I took this new job three years ago one of the great things about it was that unless I am traveling, I’m home for dinner. I had these grand visions of what dinner together every night would look and feel like and this is far from it.

Connor had three fainting spells while in his stander last fall and so we have now added cardiologist to the list of doctors we see. He had an eco-cardiogram and everything looks fine with that so there is nothing to indicate his fainting is because of his heart. But then what is it?! We’re following up with a neurologist and making some adjustments to his standing routine to see if that prevents it from happening again.

Weird spots on his cute face

At the end of January, mysterious spots showed up on Connor’s face. After visits to the Minute Clinic, the pediatrician and urgent care resulted in blood work, strep tests, allergy test and measles testing all in one week, everyone’s response was the same – “We don’t know. It’s probably a virus.”  Super helpful. The spots didn’t seem to be contagious or to really bother him, so we just lived in the tension of not knowing why these spots are on his face (and nowhere else on his body). Now after three weeks they are starting to fade, and I hope will be gone soon.

In January at a pediatrician checkup, blood work showed that Connor’s kidney levels are a little off. Kidney issues are often a part of Joubert Syndrome, so the pediatrician recommended we follow up with a pediatric nephrologist.  Of course, there weren’t any appointments for seven weeks, so we go to see this new doctor in a week or so.

See? A lot in only 49 days.

Here’s hoping the next 49 are uneventful.

Favorite Fall Things

I realize I’ve written some kind of downer posts lately, so I feel the need to assure you (and myself) that there are a lot of good things going on.  So here are the top eight great things that have happened in the last few months…

8. Pet Event. In September, Clara and I co-led a pet event in our community. She called over 40

animal rescues to ask them to participate.  Eight said yes – a great response for the first time holding such an event. Our partner in this event got several pet vendors to come and share their goods and we filled a section of the park with all things pets! The best part of the day was that several animals got adopted by families who met them at the event, including a puppy who was adopted by one of my colleagues. I was so proud of Clara and the hard work she put into this great cause.

7. Swimming Lessons.  Connor took six sessions of swimming lessons this fall and he really loved it.  His teacher was kind and patient. The goal was to get Connor to blow bubbles and start to learn to float on his back.  We didn’t quite get there, but might do another set of lessons this winter.

6. Birthday. Clara turned 12. Preteen drama has hit our house full on, but she continues to be a delightful girl filled with kindness, dance, emotion and love.

5. Pictures.  I’m a sucker for pictures of my kids.  We found a new photographer in the area and had
her take pics of the kids this fall. They turned out amazing.  So excited to have photographs that capture their cuteness and love for life and each other.

the cutest mice!

4. Halloween. We’re big fans of Halloween in the Dean household.  The kids decided to be Mickey & Minnie Mouse this year and it was adorable. They loved trick or treating even though it was super chilly.

Watching the dolphins

telling us what he sees in the tank

3. The Aquarium. On a random day off from school this fall, I took the kids to the Shedd Aquarium. Both kids LOVE going to the aquarium. We always have a good time exploring the exhibits, seeing the show and learning more about undersea life. A highlight this trip was Connor using his talker to tell us about what we were seeing.  Clara and I both got teary at how willing and wonderful he was being with his words.  I think our favorite part was find a table by the dolphins and eating our sack lunches watching them swim and play.

At the museum

2. Thanksgiving.  We had an awesome Thanksgiving break.  It was a much needed rest after a busy November.  My sister and her boyfriend came to visit and we went to the Museum of Science and Industry.

Easter Seals Photo Exhibit reveal

1. Easter Seals Photo Exhibit.  Each year Easter Seals partners with a local college’s photography

class to do a photo exhibit featuring a few kids from their programs.  Connor was selected to be one of the kids for 2017. We didn’t see any of the pictures until the big reveal event. The picture is perfect. It captures his joy, his cuteness, his uniqueness.  We are so thankful for Easter Seals, the services they provide and the way they encourage families.

The Party

On October 26, Connor turned 6! I decided to throw him a little friend party here at the house.  Nothing super involved – just play time and food with friends from day care and kindergarten.  

We invited six or seven kids and only one RSVPed (no) by the date I put on the adorable invitations.

Y’all – I was crushed. No one was coming to my little guy’s first party. I tried not to take it personally – maybe it was a busy weekend?  I tried not to think it was because he is different than most kids – maybe they lost the invitations? But those thoughts kept creeping into my head.

Making pictures with Connor's undersea stamps

Then the next night, a mom texted me that her son could come! Yes! The party was ON!  I replied that was great and warned her he’d be the only one at the party.  The party morning came, and the little friend showed up.  He and Connor started playing and then the doorbell rang – another (unexpected) friend!  Then about an hour in, the little girl whose mom said she couldn’t make it came.  By the time we were cleaning up the stamping fun and getting ready to eat muffins there were enough kids to constitute a party!

Mid-way through the muffins Connor melted down.  He was ready for the party to be done.  Predictably, the other kids were not ready for the party to be done, so they went back to the play room.  We tried to make Connor rally.  We even took a little break – all the kids piled on his bed and we read a book – but the birthday boy was done.  I apologized to the kids and the moms and let Connor go back to his room and take a nap.  The others seemed un-phased and stayed another 45 minutes playing with all of Connor’s and Clara’s toys.

So while it was certainly not a picturesque first birthday party, I’m going to consider it a success.  More people came than we thought would show up and there was art, playing, food and napping involved.  Pretty much the definition of a good time, right? :)

Our six year old!

Field Trip to Hell

In early October, Connor’s teacher asked me to go on their field trip to a farm with them. I was able to do some rearranging at work and said yes even though I just had this feeling in the bottom of my stomach about it. 

A few days later the teacher emailed saying that she had ordered a wheelchair lift bus that because lift buses don’t seat as many people now they would have to get a second bus and that wasn’t budgeted. What I should have done was expressed empathy for her situation and then waited for them to figure it out.  Instead what I did was wait a couple of days and then offer to drive Connor separately. So that morning after everyone was ready to go, all 50-some kindergarteners headed to the bus while I headed to the CR-V with my kindergartener.  And so the field trip began.

Trying out the tractors on the playground

We got to the farm and the first thing they did was go to this massive playground.  It was a cool playground but it was built on grass with no walking paths. Not wanting Connor to be left out again I

spent the next 45 minutes pushing his wheelchair through grass and heaving him on and off the various elements he could “play” on.  He wasn’t so thrilled with most of it and by the time playtime was over we were both a sweaty mess.

After a quick lunch break we went back outside only to realize it had become unseasonably warm. I had dressed Connor and myself in pants as it was fall, but that was a mistake. The kids walked around looking at some animals which Connor really enjoyed and then went to produce packing section to watch them wash zucchini.  While it was a little rough pushing along rocked pathways, it was probably the most enjoyable part of the field trip.

Our next activity was a hayride to a pumpkin patch. There was no plan for Connor’s wheelchair, but luckily the dad on the trip helped me load it up the ladder staircase.  The ride was very bumpy and Connor started to cry.  Soon we got to the pumpkin patch and it was literally a dirt field with pumpkins growing in it.  I think in the back on my mind this whole time I just kept thinking, "They wouldn't really just take us to a field without telling me or making some kind of arrangements for Connor." Ha.

We maneuvered the wheelchair down to the field and put Connor in it. I looked ahead of me at all the clumps of dirt and vines.  How the hell were we going to go pick a pumpkin?  The other kindergarteners scattered – gleefully bounding through the field to find the perfect pumpkin.  Connor was on the verge of tears again and I wasn’t far behind.  I think his aide saw we were both at our breaking points because she offered to show him two pumpkins nearby the we could pick. I managed to push him a few feet but then just picked him up and carried him to the pumpkins she had found.  He didn’t care and made a half attempt to choose between the two.  We broke the pumpkin off the plant and headed back to the wagon.  Once we were all aboard, the tractor started back up and Connor lost his mind and started screaming and crying. The other kids were sweet and worried about him and I assured them he was just tired and overwhelmed, not hurt.  I sang songs quietly in his ear and reassured him this field trip to hell was almost over.

I’m not sure what the last part of the field trip involved.  Connor was still crying as we unloaded him and the wheelchair from the wagon. I looked at his teacher and said we were leaving.  I could tell she felt horrible that the day had been so tough. She hugged me and thanked me for coming.  By some miracle, I got out of the farm complex before bursting into tears.  We must have been a sight.  Both of us sobbing as we wheeled through the parking lot (which, of course, was not paved). 

We got to the car and blasted the air conditioning.  I sat there for a minute hating the world. Hating that the field trip was to a farm, hating that my son couldn’t have fun on his first field trip, hating that it was like 85 degrees in October. Hating the things that are hard for my family that most families don’t think twice about (and I know they don’t because we were one of those families until six years ago).

After I cooled down mentally and physically and Connor stopped crying, it was time for a big breath and the reality that it was time to move on with the day.  I had a meeting at work later that afternoon and Connor was expected at Kinder Care.  Not a day to quit trying. 

I struggle with what’s fair for me to expect in these situations. Is it fair for me to expect that the kindergarten field trip be someplace accessible?  Is it fair for me to expect others to think through activities and make sure Connor can participate? Is it fair for me to say no the next time they ask me to go on the field trip? I imagine I will wrestle with these and a hundred more questions through Connor’s elementary school career.  

But this I do know – we are done with farms for a while.