Random musings from a Wife, Mom, Homeschooler, Student, and Friend

Archive for the ‘When Life Gives You Lemony’ Category

A Summer Module

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I thought it would be fun to do a summer module on the Laura Ingalls Wilder book, Little House on the Prairie. We went to the library for books on prairie dogs, Native Americans, pioneers, and the like, and launched into Laura’s world of waving prairie grasses and endless skies. In our reading today, Laura’s family came down with “fever-n-ague,” aka: malaria. After reading the story, we read about malaria from one of our library books. I had The Boy and Beanie write about malaria, and Lemony insisted that she needed to write about it too. As you can tell from the pictures below, we need to work on reading comprehension a little bit this year. 馃檪

20120809-152741.jpg聽The book on malaria actually states that a child dies from malaria every 30 seconds. This is a very sobering fact, but it is not as scary as a disease that can kill a child in 30 seconds.

How To Break a Fairy’s Heart

Few things are as terrible to me as a Mom as the sound of gut-wrenching sobs coming from one of my children. But, that’s exactly what聽I heard when I came upstairs last night. Lemony, in bed, crying as if her heart was breaking. And I think it really was.

We had had such a nice day:

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The girls dismantled this fairy ring later on. Apparently fairy rings are supposed to be made of flowers, not rocks. Who knew fairies were so picky?

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Lemony hates it when I take her picture when she is doing something cute, but I just can’t resist! She is just so darn cute!

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Who knew that fairies imported their cinnamon scent from Trader Joes?

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The first fairy gift was a sparkly gem!

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The second fairy gift was packets of fairy dust! Lemony promptly dumped hers all over her head and wished with all her might that she would turn into a fairy. Nothing happened. She turned to me sadly and said, “This stuff doesn’t work.” The Boy looked at her and said sweetly, “You look shorter to me!”

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Every few minutes, Lemony would have me or Beanie check her back to see if her wings were growing in yet.

Later, Lemony started really thinking about her fairy-transformation. She asked Beanie, “You’re going to miss me when I’m not normal, aren’t you?” She seemed a bit sad, but she wasn’t deterred. She had already shrunk several inches. (Having her platform shoes off when she measured helped, but I didn’t feel the need to point that out at the time.) She was on her way to becoming a fairy! By supper time, I knew this was more than play, and she was going to end up hurt. Ah, Mom to the rescue! I came up with a cute rhyming chant that counteracted the fairy dust and explained that Mamas don’t like to have their little girls taken away from them and they have the power to stop the transformation. Lemony was not happy about that idea, but she thought I was joking, so she didn’t give it much thought. Throughout the evening I kept it up lightly, and said at midnight, she would be a little girl again.

Before bed, Lemony realized she was no longer shrinking.

Half an hour later, sobs. “I’m never going to imagine again! I’ll never get my dream!” Ugh. Arrow. Heart. Direct hit.

Child’s play is serious business. I didn’t know just how serious until last night. Who am I to run in and rescue? Would it have been better for her to wake up this morning and learn the truth by herself? To invent her own reason for it?

I聽just took her to my room and cuddled her. I asked her if she could please stay my sweet little Lemony because I couldn’t imagine my life without her. She hugged me and agreed and went to sleep.

***

When I was a child, I spoke as a child, I understood as a child, I thought as a child; but when I became a man, I put away childish things. (I Cor. 13:11) The time will come when fairy rings and wings and midnight flights to the moon are put away as childish things. Right now though,while they are children, and the world is open and full of limitless possibilities. And some hurt too. But, I can’t take that away. I can listen and smile. And not meddle.聽 Or at least try not to meddle…

Help in a Time of Need

One verse has helped me throughout my life, Isaiah 41:10–Fear thou not; for I am with you: be not dismayed; for I am your God: I will strengthen you;聽I will help you;聽I will uphold you with the right hand of my righteousness.

Fear not

Two week ago, I woke up, went to wash my face, and looked in the mirror as usual. The reflection looking back at me was not my usual reflection. The right side of my face was drooping. It was scary to say the least. I called the Hubs at work, and it was then that I realized that my speech was affected as well. J came right home to evaluate things. Looking back, it was a small miracle that he was free at that moment to come home. Most days I don’t see or hear from him until after 6pm. He reassured me, and lots of Advil later, I was back to usual. Saturday morning, I woke up and I was worse. Now my right hand, in addition to the right side of my face, was weak. My speech was worse as well, and my vision wasn’t normal. We headed to the ER. I was admitted to the hospital for a stroke work-up. MRI, CT, echocardiogram, bloodwork,聽x-rays, etc, etc, etc. All came back normal and confirmed once and for all that I do, indeed, have a brain. While the hospitalist would not rule this out as a TIA, the most likely diagnosis is Familial Hemiplegic Migraine. Just like Lemony.

*

Be not dismayed

dis路may//
tr.v. dis路mayed, dis路may路ing, dis路mays

1. To destroy the courage or resolution of by exciting dread or apprehension.
2. To cause to lose enthusiasm; disillusion.
3. To upset or alarm.

n.

A sudden or complete loss of courage in the face of trouble or danger.
*
To say the least, I was dismayed. In the days after the hospital visit, things were strange. At times I could talk clearly, then not. At times I could use both hands freely, at times not. Sometimes my smile was straight, at other times it drooped or worse–pulled to one side like someone was pulling it with a string. At times I could see normally, at other times I saw double images or things were blurred. The worst night was Tuesday before Thanksgiving. I had trouble with everything. And then there was pain. That was when I really broke down. That made it worse still.
*
We spent Thanksgiving in Virginia with the Chaotic Quiver, grandparents and cousins. The early part of Thanksgiving Day was rough, but by that evening, I was feeling much better, and I continued to feel better after that. Ah, the healing power of giggling madly with your sisters! We drove home, spent one night, and left again for Ohio. We got back home in the wee hours yesterday. I had to do major grocery shopping, involving three stores and three kids, and pick up the dog. Normally, this would be stressful, but doable. Yesterday, however, I聽started having some of the symptoms return. I was feeling weak and聽sorry for myself, and I prayed, half-heartedly, that J would be home to help me unload the groceries. It was only a bit after 5pm, so I wasn’t hopeful. He was home! He unloaded the groceries, and I sat on the couch and felt very sorry for myself. Mostly because the Advil bottle was all the way upstairs, and I was too tired to get it. I prayed, again half-heartedly, for strength. I looked up and saw our mini-bottle of Advil on the coffee table in front of me. Inside was exactly one dose. Call it coincidence if you want, but I don’t believe in coincidences. I believe we have a big God who loves us, even at our most pitiful and whiny.
*
I will strengthen you…I will help you
*
So many things came together for my help that I cannot see them as anything but help from God. That J was able to come straight home that first day, that he was off the following day to take me to the hospital, that he was home to help with groceries, that the Advil was actually right in front of me. Seemingly inane things–random things–to someone else mean everything to me. I have to stress this point–these random things typically do not work out for me. For most of Lemony’s crises, I’ve had to handle them alone. I cried many times because J wasn’t there, wasn’t able to come home, wasn’t available to go to specialists. Was that because God was giving me the strength to handle it myself? I think so now. And when I needed help for myself,聽He provided it.
*
I will lift up mine eyes unto the hills, from whence cometh my help.
My help cometh from the LORD.

What’s in a Name?

For me and for Lemony…everything. We finally have a name for her weirdness. Familial Hemiplegic聽Migraine. She was having some subtle聽symptoms today that her new neurologist picked up on immediately. Speaking of the new neurologist, I was impressed. She was personable and knowledgeable. (In the past, Lemony’s doctors seemed to be one or the other.) She knew about eosinophilic聽esophagitis, and she has cared for other children like Lemony who have both. Why聽they have both is still unknown, but the fact that she sees a connection is significant to me.

The diagnosis of FHM聽has been tossed around and then rejected for Lemony by her geneticist and her previous neurologist because the genetic testing was negative for the gene that can cause FHM. Today I learned that the very doctor who discovered the FHM gene works in the same Children’s Hospital as Lem’s new neurologist–and she acknowledges that there are probably many more genes involved that must be discovered.聽 So far, she has found three genes.

We also seemed to be going away from the epilepsy diagnosis. No one can say for sure , but most of Lem’s episodes can be definitively linked to complicated migraine. Including her weird eye problems–basically these are聽hemiplegic attacks in her eye muscles. If we see any of the other seizure-like episodes, they will schedule a video EEG. I haven’t seen one of these in a few months, so I am hopeful we are past all that.

All in all, I am relieved. We have someone to care for Lem who has seen children like her before–this is just huge for me! I feel like we are no longer fighting this alone.

Unanswered Questions

Why? Why? Why?

What is going to happen?

Can someone fix this?

Is this going to get worse?

We said goodbye to Lemon’s neurologist today. She has been great to us. But she just can’t give us any answers. Maybe when we move, someone will be able to tell us why she can go from this:

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…to this:

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…all on random days at random times with no visible trigger. Yesterday she was having difficulty walking. Three days ago she was having difficulty chewing. Today she is fine. I’m thankful. I really am. But…

June, continued

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Within a few days of being home, Emily developed a new symptom–the left side of her face wouldn’t move. I called her neurologist’s office and was advised to take her to the ER. I gave the doctor there Emily’s history and the recent events, and he diagnosed Todd’s paralysis and sent us home. This weakness went on for the next three days with varying intensity. These are the pictures I took of her face during that time.

>June

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In June 2009, I took the kids to Virginia for a vacation with my family. Emily had a wonderful week. On the last day we went to our friends’ house, and she was a bit fussier than usual. She had a “stuck/staring” spell as she was trying to get into my friend’s car, but she seemed fine the rest of the day. The following day, we started on our 10 hour drive home. Within 5 minutes of our trip, Emily began to have one of her car episodes. She was completely unresponsive to everything I tried, and her eyes were open, deviated to one side, and staring. This was the longest episode she ever had. As the minutes ticked by, I called my husband to see what I should do. He called Em’s neurologist, and she told him to give a half-dose of her current seizure med and the emergency med that we always carry if we couldn’t bring her out of it. If we had to administer the emergency med, I was instructed to call 911. I had never had to use the emergency med, but I started to get it ready. Emily was still unresponsive as I got her out of her carseat and laid her on the driver’s seat to give the rectal Diastat. A second before I administered it, she came around. She was fuzzy and scared, but responsive. Using her past as a guide, I thought we were over the worst of it. Rather than subjecting her to a strange ER, I got back in the car and headed home again.
I was trying to keep her taking and engaged, but after 20 minutes of driving, she began to have another episode. I pulled over and began to get the Diastat ready again. As before, she came back around before I had to administer it, but this time she was extremely lethargic and her words were heavily slurred. I sent this picture to my husband so that he could explain to her neurologist exactly what was going on:

Back on the road again, Emily had yet another episode. I got off the highway and followed the signs for a hospital. By the time I reached the parking lot of the emergency room, Emily was stirring but not fully arousable or alert. I loaded her into her stroller, got my other two children, and started to run for the door. Emily started screaming and thrashing. I was worried that she was going to fall and hit her head. I tried to get her out of the stroller to carry her, but she was hitting and kicking me. Again, her past history was working against me–this was her usual “post-ictal” state, and nothing but time made a difference. (We had taken Emily to the ER at home when she was in this state the previous fall, and they would not do anything for her.) Back in the car we went. All I could think of was getting her home and back to her own doctor for help.
By the time we reached the next state, she had another episode. Again, I pulled over to look for a hospital. This one was much shorter. Emily was obviously exhausted, and she fell into a deep sleep. I had to reassure myself that she was still responsive even though she was asleep–she was–and I started driving again. A short while later, I pulled into a hotel for the night too shaken to go any further. Emily was aggressive and irritable, but she slept the entire night and woke up back to her usual self. I took the rest of the drive home very slowly with frequent breaks, but Emily did not have anymore episodes.