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. 

9.27.13 Normal

Tonight, for the first time in oh so long, I looked at Aimee and saw her there. She start talking again this evening and engaging as she normally does. Her symptoms are almost completely gone. Her temperatures have normalized to her typical levels. And she is back to her emotional self. We trade all nighters full of coughing and choking for late night sob sessions, which is absolutely wonderful. Not because I want to see her cry, but because this is her normal and because holding my healthy girl brings joy to my heart. She is communicating with me again and even in the abundance of tears that wet her cheeks, I am so thankful. Here is to health! 

We have a few follow ups this week to officially ensure that her infections are cleared, but I believe I can finally say, after a full month of sickness, Aimee is well! And colds, flus, viruses, and infections, keep your distance! You are unwelcome guests.

9.16.13 Answers

Aimee is definitely improving. They for sure identified an infection in her urinary tract and are also treating her for pneumonia. She has perked up significantly and the antibiotics are doing their thing. 

Yesterday this musician came and played his bassoon right outside our door. Really, really cool!

Also, Aimee and I got to cuddle up together during the thunder storm and cheer on the Seahawks. A special treat to get so much time with my girlie, although I miss all my handsomes!

9.14.13 At Children's

Quick Update:

We spent several hours in Urgent Care this afternoon and were finally transferred to emergency at children's. After blood cultures, x-rays, catheters, ect, it looks like she has a pneumonia and they
want to keep her here while they wait on her blood cultures to come back to see if the pneumonia has spread bacteria into her blood stream. Her blood pressure is low, her white blood cell count is low, although her temperature has been in the 96s. 

Ed and Elliot headed home to get some rest. Not the place we would have chosen for a girls' night sleepover, but I am glad to be with my sweetie.

9.13.13 Perplexing Patterns

Confused and worn down me cannot process this past 18 days. Several ups and too many downs later, Aimee is still sick. This is simply not normal. I am afraid that our life is warping around it and these coming months will shift our patterns of interaction with the world outside our door. Perhaps I will have to let go completely of attempting to keep up with the typical world.

Aside from the perplexing pattern of sickness, another oddity that has us confused is Aimee's temperature. We have been diligently tracking throughout this last month. While nearly always low, her temperature graph shows it ping pong around throughout the day. In Washington, we have had, and are still having, a lovely summer. It has been consistently sunny and warm. Our house has been, on average, 76 degrees during the afternoon/evening and 71 by the morning. Quite often through the afternoon we would get body temperature readings in the 95-97 degree range. By first thing in the morning and through most of this sickness, her temperature is in the 93-95 range. Occasionally, her temperature flies up into a mild fever. Yet, I have not seen any shivering or sweating on either end throughout.

This is a picture of Aimee the other day. 80 degrees in the house and sick Aimee was bundled up in layers of fleece clothing and blankets to keep her temperature up.

This has me throwing random ideas around. Is she not getting enough fats, does she require movement to keep up her temperature, is it typical for low toned kids? Is her nervous system's inefficient communication affecting her body temperature? And how in the world can I regulate it? Sometimes it changes 3-4 degrees without any external adjustments at all. Perhaps, after we all recover and get some sleep, my brain will be able to better sort it out. 

Ps. Thank you to my generous parents who came over Monday and gave me an opportunity to take a nap, read a book, and even provided dinner. What a refreshment! Thank you to Kathy for coming this afternoon so that I can get groceries. Thank you to Shari for always supporting us. And thank you to each of you who in different ways are gracious towards us, listen to our challenges, befriend us from afar, and remember us in your prayers. We are grateful for such a wonderful crowd of friends and family.