10.28.13 New Keys

In the midst of the current sickness, we have discovered two keys to comfort.

First, we found a way to make her so much more comfortable. She has to be in her chair 24/7 when she is sick. It never occurred to us before that she could be snuggled in with a few adjustments on her side. How did this never occur to me before?!

The second key is really more about my own peace of mind. We bought a monitor to track her oxygen saturation, heart rate, and blood pressure. Now we don't have to take her in just to ensure that her oxygen levels are high enough. One less stress point!

10.23.13 Absence Seizures

Yesterday we met with Aimee's neurologist. We left the appointment with very mixed feelings. On the positive side, I came prepared to argue for trying out the ketogenic diet to control seizures and   eventually phase out some meds. Without much argument, the doctor agreed that Aimee could be a good candidate, but informed us that there is currently no room for new patients in the program. Disappointing. However, as I was concerned about Aimee's mood changes, he allowed us to decrease her dose on the least essential med. Assuming that she stays stable, we could even consider reducing it further. Very encouraging. 

While we were there, he reviewed with us the original EEG results and we discussed what her known seizures look like to us. He said that the test had shown spikes every 3/4 of a second all over her brain, but most often in the front. The results showed her at risk for multiple types of seizures, especially absence seizures. He brought it back up to us because while he was examining her, he felt that she had an absence seizure. Bad news. 

From here we need to track these episodes and when we return in a few months we will decide if an inpatient test is needed. The episode that he thought was a seizure looked like Aimee spacing out, which she definitely does do frequently. I couldn't say how often... I always assumed it was boredom or just a side effect of her overall condition. We are trying to process how we can even keep track of these types of seizures to know what the patterns look like and at what frequency they occur.

Unfortunately, in the midst of these conversations, it appears that Aimee has picked up another bug! This afternoon she has gradually shown more symptoms. Her breathing has become more congested and labored. Yet again our focus shifts to the basics.

10.21.13 Doggie Paddle

It seems that I have forgotten how to swim. 

I've never been the best swimmer, but darn it, I could make it across the pool and back with out any floatation devices. Last month, while Aimee was sick, I was grasping for the side of the pool or for the arm of a swimmer passing by in the neighboring lane. I felt ragged. Thin. My arms are still trembling and my legs are weak as I attempt to float on my own. It probably isn't pretty. Some moments I am impatient, unproductive. But, I'm paddling and the pool hasn't bested me yet. 

This smile keeps me paddling:

Aimee was officially cleared at the beginning of this month, although her doctor (and even some of her family) are concerned about her beginning school. Last year, she rarely was able to attend due to illness. This year, she has already missed several weeks. We have done our best to keep her well, but I do wonder if there is more we can do. I value her doctors' abilities to deal with sickness as it arises, however, the only suggestions they have offered for preventing illness are washing hands, steroids, and keeping her home. We have added nutritional changes and some supplements, but are open to more ideas.

For this reason and several others, I would like to consult a homeopathic doctor. Anyone have a recommended one in our area? I am hoping to solve the sleep dilemma, which I am quite certain contributes to her difficulty kicking common colds. I am also hoping to have help finding replacements for some of her medications that may be contributing to both issues.

This summer we again pursued getting Aimee covered by disability insurance and again were denied. However, at the recommendation of a friend, we applied for children's state health insurance provided on basis of financial need and all three of our kids were approved. We are trying to figure out what this means for Aimee, but are very hopeful that equipment costs will be covered (it is time to replace some equipment, fix broken pieces on her chair, and get her bed) and maybe even monthly medical expenses will be reduced (min $960/month). Praying that we would continue to have peace in God's faithfulness to provide.