11.14.13 Housekeeping

Don't worry, this post is not about keeping your house clean. I have little input to offer you in that department. In fact, it is entirely overrated. Except that it is actually wonderful and I miss it. 

Anyways, our appointments yesterday were somewhat like housekeeping. First we met with Aimee's Neurodevelopmental doctor. He takes any and all types of questions and concerns. He throws some out and answers others. It is good to have a place where we can ask about the little things. For example, who do you talk to about temperature regulation? Or panic attacks? Or prescription diapers? 

A few new things came of it:

-testing out melatonin to help Aimee sleep

-attempting to get a floor chair so Aimee can be down interacting with her brothers safely

-trying out prescription diapers as Aimee is outgrowing the size 7 pampers

-agreement to potentially remove Aimee from school

-affirmation to bring her bring her to ER as soon as we are concerned. Even said he will back us at any time they don't check her out to our satisfaction. 

-guidance on getting respite hours

Overall, he was really pleased with how great Aimee looks, complimenting her diet and coloring. She even laughed for him during the check up. Sweet girl!

The second appointment was with a respiratory therapist. She spent a couple hours training me on chest PT and testing out a cough assist machine. We came home with clappers to start practicing for her next sickness. The cough machine is quite expensive, so we will rent for a period to test. It is kind of like an intense version of the bipap, except instead of a constant variable pressure the machine fills the lungs and then pulls the air back out. So often Ed and I wish we could cough for her. I am really hoping these tools will make things easier and more comfortable for Aimee when she is sick. I'll let you know!

11.11.13 The Wonderful Glimmer of Hope

Friday was Aimee's 4th BAER exam. Although there had not yet been any change to her hearing, we continue to have this test done to first ensure that her hearing aids are programmed correctly and second as a test of her nervous system. Aimee is mildly to moderately hearing impaired due to her nervous system challenges, specifically the auditory nerve. This test is similar to an EKG or EEG in that it tests electrical responses in the body.

This is me, all gowned up, preparing to carry Aimee and Tilly Bear back with the anesthesia team:

The test takes about 2 hours, so Caleb had lots of time to visit the fish:

Elliot played happily:

After the test was over, we were thankful to pull out the electronics in the recovery room to entertain tired parents and napless Caleb. The boys were so good all day!

While we waited for Aimee to wake up, we discussed the test results with the Audiologist. Happy surprise: Aimee's hearing showed some improvement in the lower tones! It is such wonderful news because it means that there has been progress in the nerve connections in her brain. Considering we have been told that Aimee will not make any more progress going forward, this news gives us great joy. 

Yesterday, we were able to spend some time with my amazing sister-in-law and her kids. My sweet nephew has a very tender heart for Aimee and frequently asks lots of questions about her. I am always encouraged by his hopefulness and prayers that Aimee will be "normal" some day. What a pleasure to see a glimmer of this prayer fulfilled!

PS. I applied for Aimee to be matched with a runner through WhoIRun4.com. I encourage you to check it out if you are a runner yourself or if you know a special champion who cannot run for themself. More details soon!

11.7.13 PASS

Aimee was cleared yesterday by the PASS (pre-anesthesia) and ENT clinics to have her sedated BAER (Brainstem Auditory Evoked Response) exam on Friday. Thankfully she recovered over the weekend from her sickness and was symptom free by Monday. We have kept her home from school and away from the public (aside from the hospital) this week in pseudo isolation to keep her healthy for Friday. What a relief to have her well again!

Since she has been sick so much this past year (save the summer break), we have figured out some of the patterns she follows. Her typical length of sickness is 11 days, assuming no secondary effects. Not just on average, but specifically 11 days the vast majority of the time. Since our world stops as we focus energy completely and constantly on Aimee during these times, it is helpful to know when the end is likely in sight.

Her brothers enjoy having her healthy too! Here is Caleb playing the iPad with Aimee:

And Elliot chewing on her fingers:

11.3.13 Dear Aimee

Dear, sweetest Aimee,

There is so much I have to tell you. I even have some to teach, like how to braid a dolly's hair, to love little brothers, or make special treats for daddy. I'd like to someday teach you to make hollandaise or how to write a poem. I'd like to color pictures together and wow as you surpass me. I'd like to hear the things you know and laugh with you over a cup of tea. I'd like to tell you how pretty your hair is and how you will always look beautiful without a dot of makeup. 

Today, what I wish I could say is how I really hate this disease, this disorder that robs us. I hate not knowing what you feel, think, or even what you know. I hate going to bed at night pondering you like some broken down machinery. I hate not knowing what hurts so I can pray that it gets better.

Today, I want to tell you how I love you so... but not the way I want to love you. I want to know what you love. I want to buy you a special toy that your heart so desires. I want to hear what you want to be when you grow up. I want to listen to you sing and know if your voice cracks and is off key. I want to see you twirl and dance with you to your favorite song (Or even to Move It, as Caleb calls his favorite song).

And yet, this ugliness crept in and trapped you. And I don't get to know you. I don't get to and I hate that with a deep, painful hate. It makes my chest tight and my eyes swell when I think of how little I know about who you really are.

Aimee, when we get to heaven, I want to sit with you and talk. We can hold hands like we do now. We can cuddle together like we do. Or we can run, twirl, and sing together. We could talk about how you felt about going to see doctors, about how the medicines changed things, about how I embarrassed you writing about your intimate life on a blog. I could apologize for the things I didn't know. I could smile at the times you enjoyed. And then we could get up and do the things we never got to do. You could taste the cookie dough, make a mess with the frosting, help Caleb and I make veggie juice. 

Someday, when all is whole, when these tears are dried, and sickness has been annihilated for good, I'll look into your eyes and tell you how much I love you. And you will know it fully.

Always,

Mommy

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.