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