Wednesday, January 27, 2016

100 minutes a day for 2 years

Pneumonia. Asthma. Hospital admission after hospital admission. A scary stay in ICU.

In 2010, Jaycee was in the hospital twice for RSV and then again for pneumonia. It was the start of a pattern that got worse.

In 2011, Jaycee was in the hospital 4 times, 2 of which required ICU. This time they were for influenza type A, RSV, pneumonia in one lung, and pneumonia in both lungs.

2012 was a better year after changing some of her medications. She was only in twice for asthma and atelectasis.

2013 was the breaking point for us. Jaycee was in the hospital 5 times, including once in the ICU.

These are just the illnesses that required hospital admissions. She was treated at home for other respiratory illnesses.

All of this led to my husband and I looking for a second opinion for Jaycee. She was sick more than she was healthy, and it was taking a toll on all of us. Medications were increased and daily vest therapy was started. Still, she was having breathing issues.

When we shared our concerns several different doctors, we were told, "She will just be sick. There's nothing else to do."

If they were looking at their child puffing up and gaining weight from oral steroids and missing school for weeks at a time, would they be so dismissive??? If they saw their child so sick that she needed a ventilator, would they just go on with life so easily??

A new doctor at a different hospital about 4 hours from home provided a second opinion for us. It was nearly two years ago when we met this doctor and was given a new daily treatment plan. In his experience, he often recommended a specific approach to treat children like Jaycee that had asthma, recurrent pneumonia, obstructive sleep apnea, and a lung cyst.

Jaycee had already been on vest airway clearance twice a day and an inhaler to try to provide daily support. This doctor added in another daily inhaler and a daily nebulizer treatment. He handed us the written protocol:
-Administer 1st inhaler
-Wait 10 minutes for inhaler to work
-Start nebulizer treatment
-Run 20 minute vest therapy
-Administer 2nd inhaler

Quickly, I scanned the sheet. Wait? I added up the time in my head. How long is this going to take? Only 50 minutes from start to finish?!

"It's a commitment," the doctor said. "But you will see results."

Wow! If it works, it will be worth it. I was hopeful. I was also happy to hear there were some options left. (Through the course of this second opinion, we also discovered Jaycee had severe GERD that had went undiagnosed for years!)

It was February 2014 when we started the new 50 minutes a morning and 50 minutes a night medicine regime. It was an adjustment. I had to pray my way through it at times and was reminded that serving Jaycee is a ministry of its own for me.

I am not a morning person and neither is Jaycee. This regime required Jaycee and I to get up earlier than usual for school. On school days, I get up 6 and I get Jaycee up at 6:20. We have our mornings timed to a perfection.

The morning 50 minutes of medicine ended up not being as bad as I thought it would be. I lost a little sleep. I have to go in and out of Jaycee's room more often but it has become routine now.

The evening 50 minutes has been more difficult. On nights when we have nothing going on, our night medicines are done without any problem. The difficulty has come when we have something to do or somewhere to go. When are we going to do Jaycee's medications? In a pinch, we have done them in my van. Fortunately, my van has an outlet in it, so we can run her medical equipment while we are driving down the road. This has been extremely helpful! But, sometimes it is a pain to try to get Jaycee's medications in while allowing her to have some fun.

Jaycee watching the IPAD while doing a nebulizer treatment

Has doing this 100 minutes a day helped?
In 2014, Jaycee was only in the hospital twice. One of them had time in the ICU.
Last year, Jaycee was admitted twice both of which included time in the ICU.
Two hospital stays a year is much better than 5. But, the biggest improvement has been her ability to fight off colds better at home without going into the hospital. She rarely has an intermittent wheezing and difficulty triggered from extreme heat or cold now.

What have I learned in the past 2 years?
First, a second opinion is sometimes helpful. I felt I had researched and talked to enough doctors that a second opinion wouldn't be worth my time, money, and energy. I also didn't want to look crazy and paranoid to people. But, we were highly motivated by the fear that one of these illnesses could take Jaycee's life. That brought us to just the right doctor who had a totally different approach. If you are frustrated or don't like your doctor's plan, get a second opinion. Don't assume you have tried it all!

Finally, taking care of a child with special or medical needs is a ministry of its own. Sometimes, I feel the restraint of Jaycee's 100 minutes a day. I think of the things she and I miss because of the need to keep her lungs healthy. It is easy sometimes to let it bother me and get frustrated. But, I know it's helping. I know it's worth it.

Jaycee's life is worth every minute of every day of every year spent doing treatments! That's what keeps me going!
Jaycee doing her twenty minutes of vest therapy session.

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Tuesday, January 19, 2016

Come back here! Elopement Tricks & Tips

Let's talk about child elopement. No, it doesn't refer to two children running off to get married. Elopement, according to the Autism Community, is when a person leaves an area without permission or notification which usually leads to placing that person in a dangerous situation.

Jaycee's Down syndrome, intellectual disability, and limited verbal skills have contributed to her running off or wandering off for several years.

Sometimes, she runs off because she is scared and is trying to get to a place where she feels safer.
Sometimes, she goes off on her own because she is curious.
Sometimes, she is mad at me and wants to do something that I told her not to do.
Other times, it is unclear why she wanders off.

Elopement is scary. Jaycee doesn't understand when things aren't safe for her. She doesn't know that a car could hit her if she runs through a parking lot. She doesn't know that if we get separated, people won't know who she is.

During the past 18 months, Jaycee has gotten much better. But, every once in awhile, she will dart away from me still. Having a child who does this makes you do simple tasks differently in order to keep them safe. Most of the time, I don't think about what I am doing. I'm just use to doing things a certain way for Jaycee because I have dealt with this behavior for about 7 years now.

Here's a list of things I do to keep Jaycee safe:
-At church, I never pray with my eyes closed if Jaycee is with me. I look at the floor and try to keep a visual on her instead. I will close my eyes if she is holding my hand, since I know where she is that way.

-When Jaycee was younger, I almost always held her wrist, not her hand in public. She could break away easier if we held hands, so I learned the wrist was a much safer option.

-Now that Jaycee is older, I do have a "get a hand rule." I say this to her so that she will hold her brother's hand or mine while walking in public. Even if she holds her brother's hand, it seems to help cue her to stay with us. I tend to know now when hand holding won't cut it and when the wrist method is needed.

-I never open my car door until I'm absolutely ready to exit the vehicle with Jaycee. If I open my door (which unlocks Jaycee's door) and hesitate by gathering my purse or phone, then she has a few extra seconds to have an opportunity to jump out and go without me.

-Our house can never have too many locks! Deadbolts are always used. The door to the pool outside has 3 locks on it, including one so high that she cannot reach it. Perhaps it is overkill, but it makes me feel better about her safety. One of our doors still has a toddler door knob cover on it to prevent her from reaching the garage.
Door to the pool with three locks and a stop sign

-My "Stop. Ask mom." signs on two of my doors have done well with Jaycee too. I resisted putting these up for a long time because I didn't want a stop sign in my home. But, I will say that they have worked with Jaycee. Visuals help her understand.

-If we are visiting someone's home, I make myself aware of the possible exits for Jaycee. If there are multiple exits, I will most likely be stressed out watching all the doors while trying to give Jaycee some freedom.

-I wrote Jaycee a few social stories when she was in pre-school. Social stories are personalized stories to reinforce a behavior, teach a rule, or address some other issue in hopes that the child will have better understanding. I wrote Jaycee two stories. One story was about going out with mom. This story reminded Jaycee to hold mom's hand and how to be safe in public places. My second story was about swimming. This reminded Jaycee she must always swim with mom and never get into the pool by herself. I don't know if these stories helped her understand. But, it reinforced what I was teaching her.
A page in the swimming social story

-Keeping Jaycee secured is the easiest way to keep her from running off in public. We use a medical stroller/wheelchair in public with Jaycee for two reasons. First, she tires easily and cannot walk long distances. Secondly, the stroller keeps her seated and prevents her from running off. I cannot take Jaycee shopping without her running off. She wants to explore the store and not wait for me to get what I need. Have you ever momentarily lost your child in a store? It's a scary second or two. Jaycee does not understand waiting, staying with me, or places that don't have a specific routine (like going down different aisles in a store). The stroller has been a very good way for me to keep Jaycee safe, especially when I have both children out by myself.

Are you dealing with elopement with your child? I hope these tricks and tips have been useful for you.

If you have an extra tip, please feel free to comment below!

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Monday, January 11, 2016

My Life: SLP & Mom of a Child with Developmental Delay

Life can be quite ironic at times. My job and home life is surely proof of that very thing.

When I graduated with my Master's degree in 2004, I was excited for my first job working as a speech-language pathologist for a local school district. In college, I had taken all the required courses, completed my internships, and had a significant amount of my clinical work with children with autism. Fresh out of college, I knew that I had a lot to learn but was ready to take on the challenges that were ahead of me.

I loved my job in the school. There were a variety of cases I saw in the pre-school and elementary classrooms. I especially loved the pre-school children as I could be silly and playful with them. Some of the children I had were difficult cases. I did the best I could at the time with the knowledge I had. But, I often wondered what life was like for these parents of the children with more significant delays.

During my second year of my job, my husband and I were thrilled to be preparing for the birth of our first child. My co-workers threw me a baby shower three weeks before I was due. Little did I know, it would be the last time I saw them for some time.

That night, I went to bed thinking I had overdone it at the baby shower. But a few hours later, I realized that I was in labor when my water broke. Jaycee arrived shortly after getting to the hospital, and it was a thrill to see our sweet baby.

Then things took a different direction. She wasn't breathing well and needed medical care at a bigger hospital. Later, we found out Jaycee had Down syndrome, an AV canal heart defect, and was in congestive heart failure.

My baby was medically fragile, and I could no longer work full time. I did not return to the job at the school telling myself if things ever settled down, I may find myself there again. For six months, I did not work at all. I cared for Jaycee at home becoming her "nurse" giving her medications, counting every ounce she drank, starting her early intervention therapies, and managing her 3 month stint of home oxygen.

When I rejoined the work force, I decided the best fit would be private practice with my primary focus being in the early intervention program. My goal was to keep my caseload small so I could work a couple of days a week giving myself time to be at home with Jaycee. I enjoyed the work and has a fresh perspective as a mom of a child with special needs.

The lines between my home and professional life blurred for several years. Jaycee had a number of feeding difficulties including a weak suck, texture aversions, and poor chewing that I took upon myself to treat. I taught Jaycee sign after sign trying to build a vocabulary while we waited for verbal speech to come. She had several professionals addressing her delays but I felt it was my duty and my obligation to help Jaycee at home too.

Before I knew it, Jaycee was ready to start pre-school. Three years prior, I was leading IEP meetings at this same pre-school. Now, I was the mother in the IEP meeting with a sick feeling in her stomach. Now, I knew exactly how those parents felt.

Honestly, my professional life was emotionally difficult the first 5 years of Jaycee's life. I knew developmental milestones well, and it was obvious that Jaycee was behind. When I would score a language test of a child with significant delays, I would instinctively know that my child was almost always "worse." It was hard not to compare and stay detached when the struggling children I was working with were making progress with verbal speech as Jaycee remained mostly silent. Sometimes, I envied those parents who wanted their child to say a specific phrase while I would just be happy with a word, any word! Yet, the biggest part of me understood their worry, stress, and problems created in daily routines because they had a child who couldn't communicate well.

It seemed like once Jaycee started elementary school, something changed in my brain. I was able to just measure Jaycee against Jaycee. I didn't compare children I was working with to my own situation. I somehow learned to separate the two worlds better. Perhaps, this was made possible since I gave up working with Jaycee at home about that time and just let her own team help her. I got rid of our stack of worksheets, oral-motor tools, flashcards, and list of skills we were trying to develop. I think we both felt relieved when I relinquished the role as Jaycee's extra therapist and became her mom (and continued as her untrained nurse). In a way, I felt quitting was doing Jaycee a disservice. But, it was actually allowed me to develop a different relationship with Jaycee.

Later this year, I will mark my 10th year in private practice and in the early intervention program. I still haven't made it back to work full time due to Jaycee's frequent hospital admissions, daily health needs, and multiple specialists she sees. I suppose I'm still waiting for things to settle down a decade later. The school job that I thought I might return to one day feels more like a wish now that an actual possibility.

Being Jaycee's mom and a speech-language pathologist has been good at times. I honestly would have been lost without my training and my access to materials. My background in sign language was helpful. My interest in oral-motor and sensory feeding issues all came in handy with Jaycee for sure. However, it's been hard for me at time to separate the two roles. It was hard for me to shut off that therapy driven, goal focused mind and just be a mom.

Jaycee has definitely made me better at my job. I can more easily relate to children with limited understanding and expressive language. I can also relate to parents much better as I have walked in their shoes. I understand first hand how a child's lack of verbal communication can cause the child and the communication partner to feel frustrated. I know what it's like to wait and wait for your child to speak. I know how frustrating it can be when it feels like your child isn't making any progress.

I also know the satisfaction that comes as a therapist when the child you are treating makes advances. And I know how wonderful it is when you are the proud mom of that child! The neat thing is-some days I get to have both!
"I'm a speech therapist. What's your Super Power?"

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Tuesday, January 5, 2016

2016: My Year To Be Pessimistic (Realistic)

This year, I'm making a change. I'm giving up on some of my optimism.

I have realized that being positive over the past few years has actually set me up for failure. When it comes to Jaycee's medical needs, my hope that she might get better and improve has set me up for one disappointment after another.

Let's go back to when Jaycee was a year old and the word "asthma" was spoken over her. No big deal was my initial response. It will get better. Every person who told me of a friend or family member who grew out of asthma just fueled my positive thinking that Jaycee would no doubt be just fine one day.

Every time her fingers turn blue or her breathing goes into the red zone on her asthma chart, I get upset that Jaycee's life is still threatened by asthma. Today, Jaycee is almost 10 years old. She's still taking daily inhalers, wheezes when she gets a simple cold, and is still impacted by asthma.

Then there's Jaycee's c-pap use. At age 3 she was diagnosed with obstructive sleep apnea that was not corrected after having her tonsils and adenoids removed. The first few years Jaycee was on the c-pap were extremely frustrating as we tried to get Jaycee adjusted to wearing it. My hope and prayer was always that Jaycee would improve and no longer need to use the machine. It limits her ability to sleep over at family members homes and prevents her from sleeping where she wants in the house (or in the car).

Over the years, Jaycee has switched to a bi-pap and her latest sleep study indicated the need for even higher settings. After years of worsening sleep studies, I have relented to the fact that this machine is forever a part of our lives.

Fifteen months ago, I started giving Jaycee a weekly bleach bath (or a swim in a chlorine pool) as part of her treatment to control a staph infection on her body. What I figured would just be a temporary addition to our routine is still there.

One last example, Jaycee started vest airway clearance in the fall of 2013 to treat her lung cyst, recurrent pneumonia, and poor cough reflex. She has used it twice daily (or more) since then. I was given a hopeful speech that perhaps if Jaycee stayed pneumonia free for a desired amount of time, then her vest treatments could be reduced or decreased significantly. I optimistically looked forward to the day when this happened, telling myself that this was just a temporary device Jaycee would need. Yet, the vest airway clearance treatments have not changed a bit since they began.

I want Jaycee to be healthy. I want Jaycee to have as few of medications and daily interventions as possible. I want there to be a day when I don't have to worry about her health. I want her life not to be threatened by a silly cold virus. I want her immune system to work properly. And if I could never, ever see her in a hospital bed again, then wow!! That would be something!!

But, I think I have been setting myself up for disappointment after disappointment by wishing for a cure or a fix for things that may never be. Perhaps, I have always looked at every intervention as "temporary" because it was the only way I could cope. Like, if I thought the c-pap was forever in our home when it came in at age 3, I would have just been too overwhelmed at the time. Sometimes, I feel like I walk a dangerous line between having faith that things will get better and being in complete denial.

When I put a time table in my mind as a possible end point for this or that which come and go with no change, I tend to get upset and wonder when life will be easier and less restrictive for Jaycee. I hate putting her through so much medicine and doctors. I just want her to be healthier.

I suppose I have decided to approach things differently this year. I am not expecting anything to change this year. I have decided that the 11 medications, twice daily vest treatments, daily nebulizer treatments, bi-pap machine, and weekly bleach bath will just be factored in to this entire year. I will still hope and pray for Jaycee to get better, but I refuse to be depressed or disappointed when these things are still apart of our life next year.

Perhaps instead of saying this is my year to be pessimistic, I'll just say I'm going to be realistic about Jaycee while I pray for her best. Whether things change or not, I will appreciate the life God has given us this year.
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