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.