10.11.16 Painful Regrets

It is a lovely morning outside, but here inside the house it feels oppressively dark and stormy. I am sitting nauseously reading over paperwork from Aimee's Neurology appointment yesterday. This was not the big appointment where we learn all about KCNQ2, but because there are treatment implications we met with the epilepsy specialist. She gave us copies of the research results, as well as, a copy of findings for treatment of KCNQ2 encephalopathy. There is limited information as this severe version of this mutation is really rare. According to this research from Meyer Children's Hospital in Italy, there are 50 patients identified to date internationally. 

We had given up on finding answers for Aimee, so reading an overview of 15 kids with the same condition is surreal. There is much to feel. At this moment though, what is hitting hardest in reading this material is the repetition of statements showing that early recognition and treatement may be important for reducing neurodevelopmental impairment. 

2 of the patients in the study were seizure free due to treatment within the first 2 weeks of life. These 2 only had mild cognitive impairment. 

All of the patients seizures started between day 1 and day 4 of life. All of the patients seizures recurred quickly with discontinuation of drugs, including status elepticus. 

It is hard to type or think these thoughts, but it is possible if we had recognized Aimee's clues early on, if we had been concerned and taken her in sooner... it is possible we might have prevented some of her impairment. There is no going back. This is sickening and painful. Oh Aimee... I didn't know... 

10.6.16 Confirmed

Though we have yet to receive the official   diagnosis, the Neurodevelopmental doctor did let us know that the clinical testing confirmed the genetic research. KCNQ2. Letters that we had never even seen put together before. In November we will learn more from the Neurogenetics clinic. 

In other news, the trial of the irrigation enima was a major failure. This means that our remaining options are all surgical. We feel that we can continue with the prescription enimas for now, but are concerned about what comes next. The medications are already becoming less effective even in adult doses and combined. 

9.28.16 Back At It

Back from a midwest whirlwind weekend and feeling more whole than before. It was good to be in that old place and reconnect with a time before. 

And now we're back at it. Spent time in clinic this morning to get new AFOs fitted, to have a bone age x-ray done, and to meet with Neurodevelopmental. 

Aimee finished the day with a heart-to-heart chat with her Daddy. 

9.23.16 Life Update

Excuse the long delay on updating all of you on Aimee's life. This past couple of weeks have included several appointments and the start of a new school year. 

A bit of a rocky start to 2nd grade with a few bad days in already due to a severe 8 minute apnea just prior to school, some seizures, and a missed meal. Hopefully next week we will get things right and consistent again for Aimee's sake. 

Yoda has started coming to appointments with us, which so far has gone well.

No changes with Aimee's sleep clinic appointment, though we are considering requesting sleep medication for her. She has a difficult time keeping track of night and day recently, which means midnight dancing and afternoon snoozing. For Aimee. Not me. 

We met with Aimee's Ortho doctor who originally corrected her club feet. Due to Aimee's surgeries and me not being convinced they were doing anything, we haven't been using Aimee's AFO braces. And... I was wrong. She has lost 15 degrees of movement. So back to bracing, though only 12 hours a day. 

At her GI clinic appointment it was decided that it is time try using an irrigation enima system as we are having a difficult time still. This is basically multiple saline colon flushes. It might work. 

And, as we speak, I am sitting at Sea-Tac airport waiting to board a flight back for the Hillsdale College Homecoming. This is a big deal. Praying for a peaceful, smooth weekend for Ed with the kids. He will have help, but it is a heavy load for him to carry. On my way! 

8.29.16 Public Access Official

The tedious task of training is done. It was a long week up in Bellingham at Brigadoon Service Dogs.

Saturday Yoda and I officially passed the test for public access and he earned his vest. 

As a special treat, my two nieces and I took Aimee out to get her first make-up, gave her a little make over, and took some pictures at the park. 

Now comes the road of allowing Yoda and Aimee to bond and teaching him to alert to seizures and apneas. Here they are at church together yesterday. Bonding in a nap.

8.19.16 Bringing Home Yoda

Aside from a short time stuck on the side of the road again in the hot weather (Thank you vapor-lock prone van), we had a successful retrieval of Yoda. He is here to learn that Aimee is his new job before we begin the ADA training on Monday. More to come. 

Napping together already.

8.18.16 The Right to Bitterness

Aimee and I sat in the cafeteria at Children’s between appointments this last week. We both were eating lunch. She having a bolus of Liquid Hope while snoozing. Me eating the decent cafeteria fare available while reading a book on my kindle. It was a longer break than normal. 

We have a normal here. We are regular visitors with semi permanent passes that we only have to renew 4 times a year. We have our favorite parking spot. We have our favored route and enjoy chatting with the employees that we see when we are here. We know which clinics will be comfortable to change diapers in and which we have to visit the 7th floor bathroom that has a hi lo table to use beforehand. We are regulars. 

Yet, this visit, following the news of Aimee’s research results, I was repulsed by this place. The wounds have been aching freshly. It is all raw. All I can think and feel is the pain of the beginning. Like we’re starting the journey all over again. I hate it. I don’t want to be on this journey. I don’t want Aimee to be here. I don’t ever want to be at this hospital again. Sitting here with these people. All of us undeservedly here. All of our children undeservedly here. None of us belong here. 

There is pain. Sometimes anger. A lot of awkward moments. Questions from typical kids. Sideways glances from adults. So many people who don’t know how to talk to us anymore. So many moments when I don’t know how to talk to them either. Them. With their daughters and sons. Them with their lofty parenting ideals. Them with intact dreams. Them. 

Bitterness.

The pain in life is real. We all have pain in the living of it. The overwhelming stresses and the undeserved suffering. There is certainly no health in denying the hurt and struggle. But can we be honest without being bitter? Can I? 

Bitterness is a lonely place. We have a right to be bitter perhaps. Bitter for our losses, our betrayals, our health, our lot. BUT we are given a choice. Even while justified in anger and hurt, we get to choose between spite and graciousness. Between malice and tenderness. You and I, we get the constant choice to lay aside bitterness and seek after the gift of hope instead.

“I pray that from his glorious, unlimited resources he will empower you with inner strength through his Spirit. Then Christ will make his home in your hearts as you trust in him. Your roots will grow down into God’s love and keep you strong. And may you have the power to understand, as all God’s people should, how wide, how long, how high, and how deep his love is. May you experience the love of Christ, though it is too great to understand fully. Then you will be made complete with all the fullness of life and power that comes from God.”

Ephesians 3:16-19