A Sudden Reminder

This may seem like an odd place to post this, as compared to my other blog site, but I have my reasons. Last week in the Oso Landslides, I lost a friend, and more importantly, one of the most cheerful and encouraging women I know-especially in regards to my journey with N. After my previous posts, she made comments like:

" All I could think of while reading this was 'Thank God N has the two of you for parents'. You won't quit till you have researched all possibilities. Lucky young man."

and 

" I still say he is the luckiest boy to have you as his mama."

Julie went from being my CCD teacher during childhood, to singing with me in our little church choir, to being a huge support to me in 2006. At that time, I was a married adult and stationed back in my hometown. After the death of 2 loved ones, I was facing the reality of N's official diagnosis on the Autism Spectrum while wrestling postpartum depression and separation from my underway husband. One of my sure fire pick-me-ups was to drag N's 3yo twin and little baby sister to the quilt shop while he was in preschool on the days that I knew Julie was working. She would help me pick out fabric, and entertain said 3yo with fat quarters and bolts of sparkly, fairy-themed cloth.  "You know, Hillary, every little girl should have a quilt with fairy fabric on it." She got to me. I ended up making one for each of my girls. 

What a saleswoman. 

She spoke bluntly but cheerfully. Best of all, she made me laugh. Thankfully, when I moved to Juneau, I was still blessed with her support and wonderful sense of humor via Facebook and Blogspot.  She hugged, laughed, and loved generously, and as a result, she left behind a town in mourning for her and her son who passed with her.

Processing that this name on rosters and articles is truly her has been a hard, surreal struggle for me this week. I see other people writing farewell messages to her on her Facebook wall, but when I try,  I can't. It makes it too real for me to handle. It is still settling in my mind that she has truly passed on.

What has Julie's sudden departure reminded me? Well, two important...no, vital things:

1) No one is guaranteed a slow, aged death. I must make every.moment.count. I must make sure that those who are important to me know the things I want them to know in case I should pass into eternity unexpectedly. And I must make sure that I am ready at all times to meet my Lord and answer for my choices.

2) What is the 'instantaneous legacy' that I wish to leave behind? 

I know the longer, deeper legacy that I am working on building each day. I have goals for my family's faith and relationships, but what about their instinctive thoughts towards me upon hearing my name or seeing my face? Julie's example is that when I first heard of her passing, my reactive thought was that I was losing her joy and encouragement in my life. Joy and encouragement. Those are the first words that I immediately associate with her. What do others, especially my friends and family, associate with my name? This is something I need to keep in the forefront of my mind as I choose my words and actions.

For some reason it is easier for me to write about Julie here on this post than her FB wall. Maybe it's the pictures. Maybe it's because FB reminds me, again, how quickly she left us considering how I had just 'heard' and 'chatted' with her the day before her death. Regardless, I can say here how thankful I am to have had her in my life. I can definitely say that I am praying and heartbroken for her husband and surviving sons and grandchildren who have lost their Mother, Uncle, Grandmother, Wife and home (for her husband). I can not even begin to imagine the nightmare that they are facing. I am desperately praying for the Lord to be real to them and to send them a supernatural peace that passes all earthly understanding. 
That mountain was big. 
My God is bigger.

Blessings,

Hillary

March Appt. and Update!

It's been awhile, but we finally had our quarterly appointment today. In the meantime, poor N has been put through another gauntlet of pokes, draws, and samples which we sent off to labs far, far away...Today's appointment was basically to check the labs from January and see where we're at 6 months into treatment.

What we found is:

Stomach: The bacterial infection is better but not gone. Instead of 4 strains of bad bac. showing up, only one did, so he has to go back on a stronger dose of the anti-microbial for a longer period to see if we can git 'r done.  He also is showing no improvement with the good e.coli. He still doesn't show any levels of it. After we finish 3 weeks on the anti-microbial, we'll start a higher dose of the e.coli and hopefully it will take.

Yeast: His levels are back up which is no surprise since we've reintroduced fruit,white rice, gf oats, etc. and I haven't been monitoring the candy and syrup as much. His levels are still 'normal' at a +1, but we're still going to watch it. Dr. Bock doesn't think we need to go fully back on the protocol and meds again, but we are going to be more diligent about spacing out the grains and fruits, and continue w/ Candex (a natual yeast-fighting enzyme) in hopes that we don't need to restart an anti-fungal.

Hypotonia-We are doubling the dosage on his Acetyl L-carnitine and his Ubiquinol in hopes that it will continue to help with his muscle tone. While we have seen some improvement in this area, it's very limited.

His Vit. D was better, but still on the low end of normal. I was encouraged by this. Even though we need to increase his dose,  the levels show that he is absorbing a great deal of his supplements which is great!

Now for the new, interesting developments:

Arsenic.

Yep. While we haven't been eating shellfish and tuna, we have re-introduced white rice which does contain arsenic. While it's an organic (as in naturally occurring, not organically farmed) arsenic and it's the inorganic arsenic that usually causes problems, it shows us that his body is not flushing it out like it should. We know his sulfate and glutathione levels are low (which is why he takes transdermal creams for those), but we are adding in a more concentrated sulfate cream and a Taurine supplement to help boost his metabolic processes to work properly. (You can read about Taurine here).

Also, I've been seeing a smattering of articles relating Vitamin C deficiency to ASD come through my Facebook feed and NIDS forums. When I asked Dr. Bock about this, he said that it wasn't tested for directly in N's case, but if there's a Vit. C problem, it usually shows up in some of the other panels that are run. While he agrees there's definitely benefits to Vitamin C, he doesn't necessarily see a deficiency as a big trigger with my son. So, we'll go ahead and throw one pill in the mix each day as an added immune booster.

Now, lab tests aside, N is wowing us every day! He is learning to snowboard (which requires great balance and coordination) and he is keeping up with the rest of his group and not needing one-on-one teaching!  He is also participating in Tang Soo Do Karate and is getting ready to test for his orange belt in a few weeks. His focus and discipline to be able to do this is astounding considering his past issues in those areas! He is still as sweet and endearing as ever, but is definitely developing a more well-rounded interest in activities and conversations. He is excited to resume Little League next month, and is soaring through a Coding curriculum to learn to program in various computing languages. He completed one year's worth of curric in one semester and has moved on to the next. He definitely gets that from his Daddy, and not me!

We are finishing up our 3rd year of biofeedback therapy. In January, the therapist switched 'targets' and is now using a method that specifically works on him being able to shift his thought patterns so that he is not hyper-focusing. We have seen drastic results. While the data test (yesterday) showed that he still needs a lot of work in this area to cement the pathways, his behaviorial data is fantastic. We are greatly encouraged by this development.

As always, when I write these updates, I am overwhelmed with gratitude for all the Lord has granted us in being able to help our son. Between financial provision, attentive specialists and therapists, and graciously patient snowboarding and karate instructors, I am reminded that this is not a one-person journey. I am confident, however, that N has a wonderful life ahead of him, and that he will be successful, even if challenged, in all that he does because of the support he's receiving now.

Blessings to you all,
Hillary and N