Summer & Fall 2020: School, Surgery, Seizures and Sunshine

 

Ufff. It’s been a while. Mostly because, like the rest of you, we have been trying to keep our heads above water during this pandemic. But, like most seasons in our family, it has not been boring...

* Because Connor is considered high risk and just to be good humans, we have mostly been quarantining since March 14. With no family or close friends nearby, we’ve been experiencing the isolation that I know so many are facing. Life with a child who has intense special needs can be isolating in and of itself. The pandemic has only multiplied those realities.

Bike riding at one of our favorite
local parks

In August, we let one of Clara’s more responsible friends into our “bubble” and that has been so good for her. Because Connor won’t wear a mask, his close contact with others has been limited to doctors and the occasional therapist. One day, after struggling to practice mask wearing, I just looked at him and semi-shouted, “Don’t you miss going to Target, buddy?!” Unfortunately, his sensory issues have won out over his love of shopping (although this week we had a break through and he kept it on for several minutes finally!).

This fall we have done a couple of outdoor, masked hangouts with friends and colleagues which has been so life giving. Mostly our weeks have been filled with soaking in the sunshine and exploring the many forest preserves in Chicagoland and partaking in a few fall outdoor activities. If I’m being honest, my deepest dread right now is the impending winter here and that the weather will force us indoors for the weeks and months to come.

* Both kids have been 100% distance learning since the middle of March. Clara misses her friends, but is independent in her studies and doing very well. This spring and summer, she took on extra responsibilities with Connor and his learning to help us out. I’m not sure what we would have done without her!

Connor's first day of 3rd grade

Connor has been doing so-so with distance learning. I think he misses the interaction with adults and kids at school but can mostly pay attention during his Zoom time. The hardest thing is that Connor is not an independent learner, so one of us needs to be sitting with him almost all the time.

Next week, Connor goes back to in person learning two days a week. In some ways it was a difficult decision to send him back and in other ways, a no brainer. Our district is being super careful and just bringing back special education kids and then preschool through second grade in the weeks to come. I think this arrangement will be much better for Connor and his learning and frankly, our sanity.

* At the beginning of April, when it was evident that we were going to be doing this at home quarantine thing for a while, we decided to go all in with potty training Connor. Knowing he likely wouldn’t tell us when he had to go, we went the “habitual” route – meaning he sat on the potty every 30 minutes. It felt like all we were doing was going to the bathroom, putting him on the toilet and washing hands. For weeks. We gave ourselves a little grace and pushed the schedule to every 45 minutes. About once a week, Connor would go on the toilet, boosting our hopes that this was really going to happen. Accidents were rare and he became an ace at holding everything in until it was rest time or bedtime. 

And here we are, six months later in about the same place. He’s in big boy undies all day except for rest time and sleeping. He has not had an accident in weeks. He also doesn’t go potty in the toilet. I’m not sure what’s next in this adventure. We’re consulting with experts and doctors to see what the healthiest and most developmentally appropriate next step is. 

Oh – and we don’t put him on the potty every 45 minutes anymore. Our backs revolted and there is now more time in-between visits.

Practicing mask wearing. You can
see his left eyelid is quite droopy
when he isn't actively hoisting it up

* Connor was scheduled to have eyelid surgery for his ptosis on September 24, but a week before he started having seizures. He had one three days in a row. After consulting with his neurologist, other doctors and therapists, we canceled his surgery and added an anti-seizure medication to his lineup. We go to the hospital for an EEG and neurology follow up on October 19. Seizures are scary stuff and it’s even more worrisome because Connor can’t tell us how he’s feeling before, during or after. The seizure medication also isn’t the most ideal because it can cause increased irritability, something we have struggled with for years. Seizures can be a part of Joubert Syndrome. We had hoped we escaped this part of the syndrome, but evidently not.

* While at home, we’ve continued with all of Connor’s therapies. He’s doing great pedaling his bike in short bursts and we have a new walker on loan from Easter Seals that he isn’t protesting 100% any more. He is making more sentences on his talker and learning to describe things in more detail. Fine motor skills continue to be a struggle, but we’ve found several new games and activities on his school Chromebook that help strengthen those skills.

Please keep this upcoming neurology appointment and Connor’s return to school in your prayers. Know that we are thankful for all your love!

Bonus picture! On one of our many walks this summer

 

Catching up - Spring 2020

Well, friends. I made no promises as to the frequency of posts when I started this blog and now it’s been ten months since my last post. I know many of you are curious about Connor’s progress and enjoy these updates, so I will try to post more often.

August 2019 - First day of second and eighth grade

We, like most of you, are living into this new reality of a stay at home order in Illinois. We are faring mostly ok. Clara is babysitting Connor each day while Brent and I work (from home) and is doing a great job with managing most of his distance learning and hers. Connor thinks it’s fun to video call with his teachers and therapists. He is less enthused about doing the assigned work for each day.

Some bullets to share other happenings in the life of Connor the last few months…

*Connor started second grade in August and turned 8 years old in October!

*While he is still having fainting spells periodically, we have been released from the care of the endocrinologist (blood sugar doctor) as they don’t think his episodes are related to blood sugar issues.

Connor's new bike from Easter Seals

*In September, Connor received a special bike from Easter Seals. He’s been using it at school over the winter months, but we are hoping to get it back and start using it outside once the weather warms up.

     *Sadly, Connor has been hit with two stomach bugs and Influenza B this fall and winter. We hope he has better luck with staying healthy in the coming months.

*Connor continues to see three therapists a week at Easter Seals in addition to the therapy he receives at school. I wish I could say he’s making amazing progress each week. It’s slow and steady for sure, but we hold on to hope that all the things we are making him do and learn will one day pay off.

Feeling the princess love

      *Thanks to a work conference I had in Anaheim, the whole family was able to enjoy a few days at Disneyland and the beach. Connor loved the princesses the most at Disney and, even though the water was quite chilly, really enjoyed splashing in the waves.

     *We were supposed to see a surgeon last week for a consult on an eye surgery. That appointment was cancelled, so we are playing the waiting game to see if/when Connor will need another surgery on his left eye.

We are praying for our friends and family that you stay sane and safe during this difficult time. Find joy in the little things!

New Arrival!

We have a new addition to the family. Our accessible minivan is here! It is a full power, side entry Toyota Sienna. Connor’s wheelchair rolls right up the ramp and there are four hooks that we attach to the chair.  A minivan “jump seat” will be installed in the middle row next month so Clara doesn’t have to sit all the way in the back.

Connor loves riding in the minivan and enjoys telling people that we have one. “Minivan” might be his new favorite button on his talker.

All of this is thanks to you, our fabulous community. In all, the van and alterations totaled about $67,000. Your donations made this possible for our family. Thank you doesn't feel like a big enough phrase for how grateful we are. We're humbled and overwhelmed by your generosity and love. 

Fall and Winter Update

A general update for you from this fall and winter...

With the birthday boy at Big Bowl

Connor turned 7 in October! We celebrated in a few different ways. Connor chose to go to Big Bowl for his birthday dinner. Gramma was in town and that’s always fun. He and his friend, Alyssa, went swimming at the pool and then she came over for cake and ice cream.  He was very cute opening her gift and I’m so glad he could have a little “party” with one of his friends.

We have continued to see a pediatric endocrinologist after Connor’s hospitalization this fall. They ran more tests, took more blood and then at the end of November the doctor released Connor from his care.  He thought it was just a freak thing caused by the cold virus. Unfortunately another episode (this time very low blood sugar), took us back to the ER right before Christmas and back into the care of now two endocrinologist.

7 years old!

Connor is continuing to go to ABA therapy each afternoon. We haven’t seen much improvement in the last several months and I’m starting to wonder if it’s still worth it.  He’s so tired from his four hours at school that by the time he gets to ABA, he really doesn’t have much left in his tank. They would like for us to do two full days at ABA and then three days at school, but we can’t swing that with the bus schedule and transportation needs.

For over two years, Connor’s physical therapist at Easter Seals has been working with him an adaptive bike. This fall, Connor has finally figured out how to get all his little muscles firing and move the bike on his own. He chooses not to do it every time he’s on the bike, but several times now he has pedaled down the hallway by himself. Progress!

Loves taking selfies with sissy

We are beyond grateful for the response to the GoFundMe my sister and my friend set up. Brent and I have both cried several times – simply overwhelmed by the love and support from our community near and far. Thank you.

Current requests for prayers and good vibes include less tantrums at breakfast and fewer refusals at school. 

Desperate Desires

Clara desperately desires Connor to love the things most kids love. 

When we were decorating the Christmas tree this week, I could see her body and mind willing him to enjoy the process and festive atmosphere.  Instead, he threw a tantrum when we tried to stand him up next to the tree to help hang an ornament. At Thanksgiving we decorated a gingerbread house. Clara so wanted Connor to participate and join in the fun. She kept asking him what kind of candy to use next or where to put decorations on the house. He kept saying “go bedroom” on his talker, more interested in taking a rest than in her festive activity. She was very excited to include him in her bowling birthday party. She talked to him about it for days leading up.  She said her friends were excited to meet him (likely because she talks about him at school a lot).  He had enjoyed bowling a year ago when we went as a family, so we were hopeful he would find it cool to bowl with a bunch of tween girls. Instead, he threw a fit when it was his turn to bowl and then screamed and cried when her friends sang Happy Birthday. It was Brent’s birthday on Monday and Clara poured attention and love on him. She kept encouraging Connor to say Happy Birthday on his talker or give Brent a kiss or hug. He mostly just stared at her or off into space.

This is the story of her life. Of our life. Connor just doesn't enjoy or can't enjoy the things that most seven year olds do.

These scenes break my heart. And then they fill it back up again. You see, even when Connor “ruins” tree decorating or disrupts her birthday celebration, she is usually the first to comfort him or redirect his attention or try to laugh it off. She will go and smoosh his little face with a kiss. Or she’ll grab him and spin him around. Or she'll start dancing around and singing a funny song. Her love for him is endless and unconditional.

For seven years, I’ve been dreading the day their relationship changes.  When Clara has tragically grown out this mad love for him or when he stops giggling at her every move or when her tolerance for all the ways he makes our lives out of the ordinary has faded. But I’m now starting to think this IS their relationship.  That she will always smother him with hugs, always take pride in the idea (ok, the fact) that she is his favorite person, always have that gleam in her eye when she looks at me and says, “Mom, isn’t he just so adorable?”

She is the perfect example for me on how you can both desperately desire that something be different and be content and joyful in the reality of the present. I thank God for her in our life. She makes me a better mom and a better person in so many ways. 

19,001

As I mentioned in an earlier blog, in August we started the process of finding an accessible minivan for our family. We’ve talked to MobilityWorks (the main supplier of such vehicles), friends who use accessible vehicles and local dealerships.   What we learned is that there a million different options and it’s going to be expensive pretty much no matter what. The gently used 2016 van that we had our eye on was about $50,000. Alterations to a van that’s already owned are about $30,000. Brent said, “I never thought I would spend that much on a vehicle, but if I did, I didn’t think it would be a minivan.” Haha!

I started researching grants right away. I found several endowment type groups that offer small grants. Some we qualify for and some we don’t. I received information about a program through the state of Illinois that offers $15,000 grants for capital improvements to your house or car. PERFECT! I got on the phone with the agency and the very nice woman explained how it all worked. She told me she would send me the paperwork to fill out and once I submitted it, we would be put on the waitlist. This didn’t surprise me, but I asked her how long the wait would be. She said she had no way of knowing.  I asked how many people were on the wait list.  She paused and then said, “Well…the last I heard this summer there were 19,000 people on the list.” I busted out laughing on the phone.  “And how many grants do they give out a year?” I asked. She replied, “Oh…between 500 and 1000.” I started laughing again.  So great, by the time Connor is my age we will have made our way to the top of the list.

When I got done laughing about how absurd this whole thing was, I started to feel a little discouraged.  Even though Brent and I are both employed, and we live a comfortable, middle income life, there was no way we could afford this van. I was talking to my sister and a friend about it and they convinced me to let them start a GoFundMe for our family. I’m not going to lie – it feels really weird. Our house didn’t burn down, no one has had a tragic accident. We are just living our life – as abnormal as it is – and I had a hard time saying yes to accepting help. But Emily and Kiaja reminded me that we have this big, wide community that loves us, supports us and prays for us on this journey.  You have since the very beginning and they knew you would show up again.

We are so thankful for that. For the ways you show up through prayer, text messages, comments on this GoFundMe.

Facebook, conversations when we are in the same room and now through

I’m hopeful that we will have this van by the springtime with your help, even if we are 19,001 on the grant’s wait list.

Thank you!!

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.