Tuesday, February 16, 2021

Turning 15 with Down syndrome

 “Birthday! Me?” Jaycee has asked the past few days.

She knows it is coming up since we have been talking about our plans recently.

“How old are you going to be, Jaycee?” I ask a few times a day to help her remember.

She pauses and waits for me to supply the answer in words and gestures. She mimics both in return.

This week, we will celebrate Jaycee’s 15th birthday. She wants cookies and cream ice cream with chocolate fudge cake for her special treat. Hulk decorations will be placed in our house, and we will throw the best party we can in a near-blizzard condition.

Her birthday is always a time of reflection for me as well as appreciation for her accomplishments.

Jaycee is speaking more each year. When she wins at a game, she charges around the room saying, “Jaycee wins!” When she loses, she says “Oh crap!” Both reactions make us laugh.

We smile too when she says, “No thanks. I’ll pass,” which her brother taught her to say a few months ago.

When her younger brother started to become taller, Jaycee recently exclaimed, “Dang it!” Frustrated by the results of the head-to-head measurement, she got on her tiptoes to try to make up the difference. She’s a clever girl.

Jaycee wrote a song about one of her cousins. “Joel Butt. He’s the biggest butt in the world.” She sings it with a huge smile and laughter. It’s meant to be a song of endearment. The entire family knows the song. It’s a family joke to sing the song but replace the name with whoever is being annoying at the time. If we sing it about Jaycee, she says, “Hey!”

Her speech keeps progressing, but there are areas of struggle. When she’s ill, it is a mystery to me how she feels as I interpret her body language and behavior. Answering questions creates a large gap in our conversations. We try to give her questions that need only a yes or no response, but even that isn’t always reliable.

Jaycee is a YouTube fanatic. She loves Kidz Bop music videos and has memorized dance moves. At the same time, she enjoys watching Cocomelon and Disney Junior shows. Jaycee loves to watch Ninja Kids and will rewind parts she likes to watch over and over until we beg her to choose another video. If there is a young girl in a video, she says, “That’s me.” She also identifies other people in videos and claims they are her brother, cousin Joel, or cousin Gabby.

Shopping is an activity that Jaycee enjoys. She loves to shop for clothes and makeup. Jaycee also likes looking at baby dolls, Disney toys, Blippie items, and other things for younger children. Money and prices do not mean much to her. She loves opening up her purse to pay for items herself. She needs help making sense of her bills when checking out. If the total is too high, she will whine when I force her to hand over more money than she wants to part with at the time.

At home, Jaycee can do some chores under supervision. I appreciate her help when changing bed sheets. She loves to assist in the kitchen but doesn’t understand directions that need to be followed in a specific order. She can stir things well and put things in the dishwasher. Jaycee can pour her own drinks, which is a great step towards independence.

Despite her delays with Down syndrome, we see improvements in her each year. While other parents raising a child this age may be pondering future vehicle and college choices, we have had brief moments of apprehension when we try to look a few years down the road. We know support will be needed long-term, and we don’t know what that will look like exactly.

Still, we celebrate our daughter’s birth with much joy. Her life is a gift; she’s the daughter we always wanted. There are no regrets here. Only sincere wishes for a happy birthday and many, many more.

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Saturday, February 6, 2021

COVID, Down syndrome, & Our Experience

I'm still in a bit of shock over what has transpired in the past couple of weeks. My body is worn out. I haven't been sick, but I have been caring for those who have been. Our supply of nebulizer vials and ibuprofen is critically low. The amount of bleach, lysol, and disinfecting wipes I have used in the past week is quadruple my norm. It's been a wild few weeks, and I am grateful we are through the storm of COVID-19. 

During the pandemic, we have felt it was important to try to protect our teenage daughter, Jaycee. Jaycee has Down syndrome, a twice repaired heart defect, asthma, obstructive sleep apnea (treated with bi-pap since age 3), and other lung problems. She's been on a ventilator twice for a cold virus; any respiratory illness has historically been difficult to manage at home. 

With this in mind, we have always weighed risks for her- not just during the pandemic- but any time in her life. There is a delicate balance in keeping her safe and having a life. We have had to find this balance again and again as health issues or respiratory viruses have popped up. We don't want Jaycee to be sheltered at home for long periods of time, and we don't want to put her in harm's way, if it can be avoided. With COVID-19, there seemed more at stake when making these decisions compared to other health concerns in the past. 

We haven't exactly hidden ourselves away in the past 10 months, but we haven't thrown caution to the wind. We considered how we could do some things while minimizing Jaycee's risks. We taught Jaycee early on how to wear a mask, because she had necessary medical appointments in the spring of last year. We initially practiced short outings with her using her mask. It was a struggle at first, but eventually she tolerated the mask longer and longer. She's a pro with it now, but her drool doesn't always make it easy. I have always carried sanitizer with us but use it even more frequently during the pandemic. We used her wheelchair during outings so we could limit what she could touch and position her where we wanted her. We tried to lessen her risk; not keep her at home all the time. 

In August, she had the opportunity to attend school in-person. We felt it was important for her to attend. School is her social life, where she gets her therapies to treat her delays, and where her educational needs are met. School makes her happy; she was extremely unhappy and confused with remote learning. My son wanted to attend school in-person as well. By August, my husband and I were working outside of the home. We figured at some point, we would have a run in with the virus given that we were all going out almost daily. 

Out of nowhere, my son suddenly developed a cough one night in January. It came on so quickly that I didn't suspect anything serious. He's had many colds in his life, and this seemed like those. The next day, we took him for a COVID-19 test and paid for an additional rapid test fully expecting it would be negative. The positive result put me in a state of shock and the entire family in quarantine. We had unknowingly been around someone somewhere with COVID-19. We couldn't trace the virus, but sometimes that is the case. 

With the positive test, I found myself facing what I had feared for months. I had read some articles on the severity that could occur with Down syndrome and COVID. I also knew Jaycee's own medical history, which didn't give room for much optimism. However, Jaycee has been on a long healthy streak, and her body is stronger than its been in years. 

On day 2 of our quarantine, Jaycee woke up with loose stools. She constantly battles constipation, so I knew it was a bad sign. If she felt poorly prior, she had not made that known. I messaged a few of my strong Christian friends who gave me encouragement and calmed some of my fears. It was no surprise that Jaycee tested positive that day, as well as my husband who also developed symptoms. 

We contacted Jaycee's pulmonologist immediately. We started our "yellow" zone medicines and interventions (increased nebulizer treatments, cough assistance, airway clearance) on the first day of her symptoms as we tried to stay ahead of the problem. We were told to check if Jaycee qualified for the monoclonal antibody treatment in our state. With a quick google search, we found our state's guidelines and who they considered "at-risk." It appeared Jaycee qualified, but it took our local doctor to work out the details. 

On the 3rd day of her symptoms, Jaycee received the antibody infusion at our local hospital. The infusion was an outpatient procedure that took a little over an hour to run intravenously with an hour of monitoring afterwards. Jaycee handled the infusion well, and I took comfort knowing she had this treatment working in her favor. 

Knowing COVID-19 has a wide variety of symptoms, it was hard to predict what it would look like in Jaycee. I felt like I was sitting around and waiting to see if she stay on a mild course or get worse. I tried to fight off anxiety and stress. It all seemed to hit me at night, and I had great difficulty falling asleep and staying asleep. Part of me felt like I needed to watch Jaycee's pulse oximeter monitor all night because that is historically when she has her greatest difficulties. Ten months of hearing the worst COVID-19 stories were in my head making me feel like I needed to watch Jaycee all day and all night, which isn't humanly possibly. Her heart rate and oxygen saturation numbers bounced around more than usual at night, but nothing too alarming ever happened. 

With her verbal speech limited, I am not sure if Jaycee felt strange, achy, or lost her taste or smell. She rarely voices pain or anything of that sort. I could tell her voice sounded different for a few days. Her appetite didn't change at all. She ran low fevers of 99-100 for a few days. She often looked tired in the afternoon and evenings and slept 10-11 hours a night. A few days after her infusion, she developed a small cough. Her breathing had changed somewhat, noticeable to me because I have had to analyze it for years. But overall, the sudden decline or worsening respiratory symptoms I feared would come simply didn't. For that, I am so grateful. 

I adjusted her medications based off her oxygen saturation numbers and apneas tracked on her monitor. By the time her 10 days of quarantine were over, she was well enough to return to school (with clearance from the health department). I thank God that we were able to get her an early treatment and that Jaycee made a quick recovery. It really was an answered prayer. 

As for the rest of the family, we all faired pretty well too. My son had a few days of coughing and snot, and then quickly felt much better. My husband had a rough time having many symptoms at once. We carefully monitored his breathing for a few days before calling the doctor to get medications that seemed to slowly help. He isn't completely back to normal yet, but he's getting there. I felt I developed some minor symptoms after the rest of my family were positive. However, I tested negative not once but twice. It's a little perplexing as I obviously had a high exposure to the virus taking care of everyone in my home. As I write this, I'm left in quarantine while the rest of my family is out. I am tempted to complain about being in a long quarantine, but I have nothing to complain about. Our family is blessed that we all recovered and had no major complications. 

I share our story for other families who have a loved one with Down syndrome. Prior to talking to our pulmonologist, I had no idea that antibody treatments would be available for her. I want to make sure other families are aware that this may possibly be an option for your family member with Down syndrome or other health conditions. If your family has a run in with this virus, I hope you can have a good outcome too. 

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