Wednesday, January 29, 2014

The Big Bad Flu

During every flu season, I always hear moms debating whether or not their child should receive the flu vaccine. I usually let the moms tell their reasons why they are for or against the vaccine. When they are done, I then chime in.

"Well, the flu nearly killed Jaycee. So, yes I always make sure my kids get the flu vaccine."

In 2011, Jaycee came down with the H1N1 flu virus. I didn't know she had this until we ended up at the emergency room. The flu virus somehow triggered a fast heart rate, which led to us discovering she had Wolff-Parkinson White syndrome. For that story, read my previous post. A helicopter from the Children's hospital came to get Jaycee since she was in such distress. She was admitted to the hospital.

The fact is that even though Jaycee received the flu vaccine, she ended up getting the flu. I guess you could look at this in 1 of 2 ways: 1. Maybe the vaccine doesn't work and isn't worth doing or 2. Maybe the flu can be very serious and the vaccine may decrease your chance of ending up in the emergency room and being admitted into the hospital.

For me, I look at it from the second perspective. It seems Jaycee catches illnesses easily, so I have gotten the vaccine for her, my son, and myself every year to help put the odds in our favor.

Last year, my son spiked a 104 fever and was obviously very sick. Our doctor told me to get to the hospital to have him swabbed to make sure he didn't have the flu. Sure enough, he had the flu virus even though he had received the flu vaccine. But, Jaycee and I didn't get it. I felt that was a miracle! Jaycee drinks from her brother's cup all the time, so I was sure she'd come down with it. Elijah and my husband were both laid out for a few days with the flu. But the girls stayed strong!

So after having the flu affect people in my home in two different flu seasons, I know how harsh and serious the flu can get. I know I never want someone in my family to get it. And I'm always relieved when the flu season is over!

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Wednesday, January 22, 2014

Siblings, Friends

My kids like each other. I snapped this picture of them while we were riding home from school. Sometimes, they hold hands in the car, which is so sweet to this mom. Elijah will say, "Sissy, give me your hand." Most of the time, she reaches for his hand. But sometimes, she doesn't.

That makes Elijah mad. He'll say, "Mom, I want to hold sissy's hand, and she won't do it."

I encourage Jaycee to hold hands with her brother. She usually gives in and does it. Sometimes, they hold hands almost the entire way home (about 20 minutes). They really like each other. It's an answer to a prayer.

I often pray that Elijah will grow up to love and appreciate his sister. Given that her hospital admissions, doctor's appointments, and illnesses means that his mommy time is cut short, I pray that he can have a positive attitude through it all without feeling any sort of resentment now or in the future. I pray that he'll appreciate his role in this family and his sister's role in the family.

So, it's encouraging to see them hold hands, hug, and play together. They aren't just siblings; they are friends.

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Wednesday, January 15, 2014

Make it Happen

"We are going to make this happen," I said out loud while getting ready to go out.

My husband naturally asked, "Make what happen?"

"Whoops! Did I say that out loud? I guess I did since you heard it," I said.

I normally don't talk to myself like that. I had been in prayer for awhile that morning. It was the first day of this new year. I was asking God about goals for the year and the timing of things that have been on my heart for awhile now.

I had a really good prayer time with God. During that prayer time, God showed me how I put things off for a time when Jaycee's health is better or when things are calm for a long period of time. There isn't hardly ever a "good time" for me. I realized that I have just let some dreams remain dreams because I never did anything to get the ball rolling. I have read before that dreams are merely wishes if you never put any effort into them or do anything with them.

I also realized that I have become pessimistic. I actually knew that before the prayer time, but I didn't realize how it was affecting me entirely. I remembered back when Jaycee was being released from the hospital after a 4 week admission just a few months ago. She was so weak; she couldn't walk or do almost anything she did before being in the hospital. I sat around and thought of all the reasons why it was a bad idea to bring her home: our house isn't wheelchair accessible, she can't sit or stand for a bath, she can't use the potty, I am already sore from trying to move and lift her here, she will require nearly constant supervision, she will take medicine every couple of hours around the clock....  My husband is the one who told me that we could do it and make things happen to bring her home. And we did. It was hard but it was only for a season and it was the right decision. On my own though, I couldn't think of one positive thing that would come from bringing her home in that condition.

But, there are other ways I'm pessimistic. Just a few weeks ago, my friend mentioned going to the beach in an upcoming trip. I said, "That sounds like a nightmare." When she asked why, I started out my wonderful list: I can't use Jaycee's stroller in the sand, she has been irritated with sand being on her before, she can't swim, my son can't swim, it may be crowded, she might run off... The beach? Without thinking, the answer is NO!

The prayer time with God showed me that instead of making my list of why something won't work or why something is a bad idea, I should be thinking of ways to make it happen. I shouldn't be afraid of new experiences and let my family miss out because I can think of a dozen or more ways why something could be too hard. In other words, I need to have a mind shift.

So, as I was pondering what God was showing me and as I thought about things I have put off, I said, "We are going to make this happen," while putting my shoes on with my husband standing next to me.

I explained it to my husband. And now, it is our family motto for the year. We've never had a family motto but now is a good time to start one. Let's see what we can make happen this year. As for the beach, I'm still praying about it. I might even need to fast about that one!

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Wednesday, January 8, 2014

Stopping Offenses

It's really easy for me to be offended. I haven't had too many experiences where people were being malicious on purpose or did this horrible, public thing to me. The majority of the offenses were little things. Some little comment or some brief action that I took the wrong way. Things, that if I describe them on here, would seem really trivial. You might read them and think, "That's a weird thing to get upset about."  But, I did.

So, here's a short list of really small, insignificant situations that made me slightly upset or angry and offended:
-A person who told me Jaycee could walk if she wanted to. She just had "first child syndrome." She was only 14 months old at the time, which is typically NOT when kids with Down syndrome walk.

-The person who told me that Jaycee had a behavior problem because she was taking her bi-pap off in the middle of a night. (Uh...Do you call a 4 year old who is non-verbal taking off an uncomfortable mask in their sleep a behavior issue?)

-When Jaycee was under 18 months old, she didn't understand much. She didn't understand "no" or really any type of direction. I was well aware of her language abilities, since I am a speech-language pathologist. A report prepared by a professional evaluating her skills stated, "Jaycee was stubborn and would not stack the blocks." Well, she wasn't stubborn. She just didn't have the skills to do it or understand the direction. I could have done without the stubborn part in an official report.

-Jaycee loves babies, so she went to see a six month old baby sitting in her infant carrier. Jaycee slightly touched the baby's face. The mom told Jaycee not to do that. I followed her lead and told her no too. The mom frantically unbuckled the baby and held her so that Jaycee could no longer touch her. Then she sort of turned away from us. All of this took place in less than a minute. Was it because the mom was a germ freak? Did she think Jaycee was gross? I have never figured out her reaction, after all we weren't complete strangers.

-Then there was the wonderful ENT who brought up the possibility of Jaycee needing a tracheostomy with a matter-of-fact type of delivery. The new information felt like a punch to my stomach. When I acted surprise and pressed for more information, he said, "Well, Jaycee is pretty disabled. She doesn't even talk." I didn't know that being nonverbal meant you were going to have a tracheostomy, and I'm a speech-language pathologist. This is one of the few doctor's appointments where I ran for a bathroom afterwards so I could cry. (By the way, she doesn't have a tracheostomy.)

These were moments, as small as they may seem, when I found myself being offended. Lately, when I read the Bible and see scriptures about love and forgiveness, I realize that I'm not walking in that when I allow myself to be affected by these offenses. If I see a person who offended me and I brush them off or try to avoid them because of a past negative experience, then that's not the love and forgiveness that Jesus teaches. Now, I am definitely not seeking out people who aren't nice again and again, but it's not fair to write someone off for just one or two small, bad experiences.

I have to let these things go...never think of them again and never connect the person to the offense again. There's part of me that thinks that if I totally let these things go, then I'm saying that the person was right. But, it's not really about right and wrong. It's about moving on, forgiving people for what they said or did. Forgiving people for not understanding and not having compassion or wisdom. After all, I am far from perfect. I've said plenty of stupid things that I'm sure have offended people. And so, I'm starting the new year trying to have a clean slate and to clear these offenses.

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Wednesday, January 1, 2014

A Special Purposed Sick Day

This picture sums up what we have been doing lately. A cold brought on a sinus infection, perforated ear drum, and a respiratory infection. Snot and coughing and wheezing, oh my! Here's what we do on a sick day:
-6:30 am: Jaycee's oxygen saturation monitor has alarmed a few times in the past half hour for dips into the upper 80s. It's time for a breathing treatment. I do it with an inhaler while she's asleep and put her on her vest. She wakes up momentarily then settles in for the 20 minute airway clearance therapy. Her monitor shows improvement in her oxygen now, which is good. I then do her ear drops, antibiotic, oral steroid, advair inhaler, nasal spray, and motrin. I do the ritual bed check once Jaycee is up. It's wet which means I have to wash all the bed sheets and give Jaycee a shower. 
-7:30: Jaycee is dressed now. I show her several options for breakfast. She picks chocolate yogurt but only eats a bite or two. I read my Bible while eating breakfast. Elijah is now awake. He does his morning routine and eats yogurt too. When they are both settled and quiet, I read them a chapter from Ezekiel for our daily reading.
-8:15-10:00: Jaycee is ready to start her day of doing as little as possible. She is wore out from her illness and is content to watch movie after movie. Elijah stays busy playing and checking in on Jaycee's movie. I do laundry, wash up medicine syringes, and other chores. I frequently check on Jaycee, looking for signs of change. I listen through the stethoscope or check her oxygen levels on the monitor. I see if she feels warm and take her temperature. Because she is nonverbal and has a high pain tolerance, if she lets me know something is wrong by crying, things are usually horribly bad by that point. So I know my checking could be perceived as neurotic, but it's a necessary evil when I'm trying to stay on top of Jaycee's illness to keep her out of the hospital. Depending on what the monitor or thermometer or my ears tell me, I can get myself worked up. I pray. It's not a very good prayer. It's more of a fear based prayer-Jesus, help her to get better and not go to the hospital- rather than a prayer full of scriptures or faith. I know my prayer isn't the greatest but it's all I can muster up right now.
-10:30: Jaycee gets a nebulizer treatment and another 20 minute vest session. She is mad that we are doing another vest. She pushes me away but allows me to put it on.
-11:30: It's lunch time! Elijah complains about what we're eating as usual. Jaycee, who is normally a big eater, doesn't touch her plate. I offer her a few more things. She indicates with signing that she'll eat soup. It's true; she ate it.
-1:00: Jaycee wants to lay down with me in my bed. She signs "mama bed." She lays down for awhile but doesn't sleep. Elijah bounces around the house and watches a cars movie. I enjoy this down time. I'm exhausted from playing the role of nurse. I'm well aware of the time left before the next treatment.
-2:30: Jaycee gets another round of my checks before getting another nebulizer treatment and 20 minute vest session. Shortly afterwards, I discover she has wet her bed. For the second time today, I'm washing all the bedding and showering her. I'm frustrated. I pray a simple prayer. Jesus, help me get through these illnesses. Let me have a good attitude while I'm cleaning up mess after mess because my attitude right now is awful.
-4:15: I start fixing dinner. While that's going on, I get her bi-pap filled with water and ready for the night. I get all the night medicines drawn and set out. I have to attempt to work at my job tomorrow, so I get all my stuff prepped for the next day too.
-5:15: With my husband home, we sit down to eat dinner. Jaycee doesn't want to come to the table at first. As soon as she sits down, she throws up in her dinner plate. Our family meal time won't happen tonight. My husband and I are tired and mentally drained but duty calls. Jason cleans up the mess on Jaycee. I take care of the mess in the kitchen. She's running a fever, so medicine is started. Another load of laundry is going again. Poor Elijah is eating dinner by himself. He seems content. I try to check in with him once in awhile so he doesn't feel neglected. By the time we are finished with Jaycee, Elijah is done eating and ready for his bath.
-6:00: Jason and I eat our warmed up meal, not that either one of us has an appetite now.
-6:30: Night medicines are given. It's time for another nebulizer and vest treatment. Jason and I squeeze our baths in and get in a few minutes of conversation.
-7:30: Jaycee is exhausted and ready for bed. We pray for her to have a good night of breathing. We hook her up to her oxygen saturation monitor. She alarms as soon as she falls asleep. I put her bi-pap on and her numbers go back up.
-8:00: Elijah is ready for bed. We say our bedtime prayers and go through some scriptures he has memorized. Tonight it's Psalm 150:6 and Genesis 1:1.
-10:30: I'm still awake because Jaycee is ready for her last breathing treatment and vest session of the day. I take her off her bi-pap briefly in order to do her inhaler and wrestle the vest on her while she's trying to sleep. She's done this before, so it goes smoothly.
-11:00: With everything done, I can now go to bed. I'm tired but the stress of the day makes it difficult for me to fall asleep quickly. I pray for peace, strength, and help. In a short time, I'm sleeping. My sleep will be interrupted periodically tonight from alarms. I'll sleepily walk to Jaycee's room and try to see why Jaycee's oxygen dipped down. I'll reposition her or the bi-pap mask. Fortunately, these things do the trick tonight and no oxygen or trip to the emergency room is needed.
My special purposed sick day has ended. I can only hope that tomorrow is better.

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