Tuesday, April 28, 2015

Keeping My Sanity

When you have a child with complex medical or developmental needs, there are many, many more responsibilities for the mom. Over the years, there are things I have done to help maintain some order to the tasks and information that can seem overwhelming. Here's some things that help me:

1. An appointment book: This is the most obvious on my list. If your child has several appointments, a calendar or appointment book is a must. Don't waste brain space on days and times. Leave it to the book or electronic device.

2. A written health history: A few years ago, I decided I could no longer remember all of Jaycee's diagnoses, surgeries, and previous admission information. When we took Jaycee to the emergency room, it's hard to answer easy questions when you are under stress and no sleep. I would forget to tell the doctor she had Down syndrome and then they would gently ask me if she had a genetic condition. Whoops! Well, I remembered the asthma, obstructive sleep apnea, AV canal heart repair, and Wolff-Parkinson-White syndrome.

Jaycee is typically in the hospital for lung issues, so common questions are: when was your last admissions, how many times has she been in the ICU for breathing problems, and when was the last time she was in the hospital? When she was in the hospital once or twice, these were easy. Then it became hard. That's when I wrote up the health history that contains her diagnosis list, surgery list, and hospital admission date/diagnosis/and if she went to the ICU. I keep this saved on my computer and update it as needed. I keep a copy of it in my purse, so I always have it with me.

I have to admit that the first time I used this health history at the emergency room I felt strange. I didn't want to see compulsive. But the doctor remarked that other moms do this and the doctors like have an easy medical history to quickly read through.

3. A written medication list: When at appointments or filling out papers, I pull out Jaycee's written medicine list so I don't have to rely on my memory. When there were just 3 or 4 medicines, it was easier. But now, 9 medications when healthy and a few more when she's sick is just too many for me to remember. So, it's all on a nice chart that I carry in my purse.

4. Assigning tasks for a certain day: There are many extra tasks I have as Jaycee's caregiver, so I try to do certain things the same day of the week in order to help me remember. I clean Jaycee's foot braces on Friday afternoons. I clean her bi-pap parts, nebulizer masks, and aero chambers on Friday mornings. I check all of Jaycee's medications and get refills on Fridays. (Can you tell I'm off work on Friday?) I make sure Jaycee has her bath with bleach water, which kills the staph infection on her skin, on Monday or Tuesday night. I check her night diaper count on Thursdays. Anyway, you get the idea.

5. Keep a folder with records: I have a small folder I keep important medical reports and information in. At first, I kept everything. Now, I pretty much know if I really need something or not. My folder is pretty thin because I go through it regularly. There is the current school IEP, hearing tests, and the genetics yearly report in this folder. By keeping this information all together, I can access it easily.

6. File System for Medical Receipts: For tax purposes, I keep all medical related receipts. I started using a file folder system to make it easier at the end of the year when I add it all up. I put receipts into the categories: hospital related expenses, doctor/dentist co-pays, medications, medical equipment, hotel expenses, etc.

7. A Medicine Schedule/System: When Jaycee was younger, I had a book that I wrote down the times to give Jaycee medicine because she got several different medicines at 4 different times a day. The book helped me remember because I was suffering from sleep deprivation.

Currently, I give Jaycee medications only twice a day, so I don't need to keep a written log. However, I do lay out all of the medications in a different spot before I start administering. By placing them in a different spot than where I store them, I can clearly see what is done and what needs to be done. Sometimes, you can't remember because it all blurs together, so this is how I keep it straight.

Whenever Jaycee is sick the medication times change and there are more medications to give, so I write the dosage schedule out to keep on track. Sometimes I use the dry-erase board. Sometimes, I use the paper. If we have to run out to the emergency room or go to the doctor, I take a photo of the dry-erase board or grab the paper so I will have all of the information with me.

8. Documenting Illnesses: Remember that appointment book? I document in it the day Jaycee started needed extra breathing treatments, the day she saw a doctor about a respiratory illness, and the day she started a steroid course or antibiotics course. Why? Jaycee sees several specialists who I regularly see for check ups who want this information. If she has back-to-back illnesses, I can clearly see when she was last on steroids or antibiotics.  So it might read: May 10: Local Dr, Steroids 5 days  

9. A Packing List: When Jaycee was younger, I wrote out a list of supplies I needed for travel with her and made several copies of it. I was so paranoid that I would forget her medicine or syringes or bed pads that the list helped decrease my anxiety about forgetting something. I no longer need that "master list" but I used it for several years.

There you have it-- some of the things I do to keep some order in this busy life.

A Photo of our board before an ER dash. Xopenex, Tylenol, and Motrin are some of the meds documented.
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Wednesday, April 15, 2015

Jaycee's Language

Sometimes I think people get the wrong impression of Jaycee. They see a 9 year old girl with Down syndrome who gestures, signs, and doesn't say many words. Because of this, I feel people think Jaycee doesn't have much to communicate. But, Jaycee does!

When you are a mother, you know how to read your child. The same is true for me and Jaycee. I know what her gestures, noises, and cries mean. I know these things because I have spent 9 years with her.

So for those of you who haven't spent years with Jaycee, here are some examples of her unique communication:

-Hands on her hips= I'm mad!
-Stopping her foot with an arm extended say "h-h-h"= I'm very mad.
-Covering her eyes= I'm going to cry.
-Knocking on a window= I want to hear the song 'Do you want to build a snowman."
-Pointing to her eyes and saying "s"= I need my glasses.
-Rubbing her belly= I'm hungry.  Or= This food is good.
-Wiggling her fingers in front of her= I'm gonna get you.
-Chewing on her tongue and making a noise= I'm tired.
-Pointing to her feet and saying "s"= Shoes or socks
-Pulling at her hair and making scissors with her fingers= Haircut
-When riding in her stroller, patting her lap= I want Elijah to sit on my lap.
-One hand holds her nose= I want to go swimming.

Jaycee reminds me that there are many ways that children with special needs communicate. We just have to pay attention!

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Wednesday, April 8, 2015

Just an Eye Roll

It took one second for my mood to change.

I was observing Jaycee interact with children her age. The children were moving from spot to spot. I thought nothing of it. Then Jaycee followed them to a spot again which prompted one girl to roll her eyes at her friend. Oh! They were trying to ditch her! Yikes!

I know things like this happen but I'm better off not seeing them. I like to pretend that everyone loves and accepts Jaycee. I hate seeing situations like this.

Instantly, I felt the eye roll. While Jaycee continued trying to befriend the children unable to pick up on social cues, I sat in pity. I flashed back to other times I have observed similar behavior:

-The time the children were playing chase with the goal being to run from Jaycee
-The time other children simply stared at her and said nothing
-The time a few weeks ago when a child kept repeatedly asking her dad why Jaycee was in a stroller
-The time at Disney when a little girl told her mom that she was a big girl for walking in Disney and didn't need a stroller like her (pointing at Jaycee)
-The child at church who said repeatedly asked in disbelief "Jaycee can't read?" to her friends

A small child's eye roll was getting me all worked up. I was on the verge of tears when I left the event. I was feeling rejection. So many people love Jaycee, so why do I focus on the ones that don't?

With that thought, I began to pray. I asked God to take away the sadness and rejection I was feeling. I prayed for the child who made me feel so bad. And I started to feel better. I have found it's important to catch these thoughts early and stop them before my thinking gets warped.

And so the day continued on as normal. I didn't let that eye roll get me down! And I'm ready for the next situation that comes our way!

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