God knows best

Summer has been quiet at the Thul household.  At least the majority of it - if you start counting after July 4th.  The past month has been pretty good, a welcome reprieve from suffering.  A vacation from days spent mulling over big questions with no obvious answers.  It's been good to step back from intellectual debate and just experience summer with kids in hand and God shining through brightly from above.  This past week has been a bit of a step backward.  It's always a decision whether to blog about the bad.  But that's what this blog is about.  It's a journal of pain and how we survive it.  A journal of brokenness and what heals us.  So, while it is a delight to celebrate when things are going well, it is also a duty to speak when struck dumb by sorrow.

Amelia has had many more seizure free days since we started her on Depakote in July.  She averages 20 seizure free days per month, with a long stretch of 30 days with only 1 seizure in July and August.  However, she seems to cluster seizures for about 1 week out of every month.  This past week was her cluster week.  She was seizing once or twice a day (tonic-clonic or grand mal) and spending large amounts of time either recovering from seizures or experiencing partial seizure activity (it is hard even for us trained nurses to tell the difference).  The doctor decided to increase her Depakote once more, and then we will be talking about an admission to the epilepsy monitoring unit at Mayo if things do not improve further.  This is hard for Aaron and I on a couple of levels:

  1. Increasing the Depakote increases Amelia's drowsiness, a side effect of the drug.  It is hard to see her zoned out at times when she would normally be vibrant and engaged.  It is hard to lose even more of what we thank God we haven't lost of her spirit.
  2. She will be admitted around the beginning of October if things go poorly.  That will be the one year mark since she came down with encephalitis, and her 4th birthday.  To be a year away from the initial illness...and still ill, still needing to be in the hospital, household and family still in uproar...it is hard to contemplate.
  3. We are nearing the end of the line where drugs are concerned.  We are starting to talk about options like surgery.  We earnestly beg God that medications work and we can avoid any more invasive treatment.  (and, just for the record, we won't consent to surgery until Amelia is old enough to decide for herself or her seizures become more life-threatening)

For the moment, we can only try life-style changes and natural treatments to augment the moderate control the medications offer.  And that brings me to the awkward moment in all of this.  We have found a few things that drastically affect Amelia's seizures and all the other side effects the seizing has on her life and ability to function.  The biggest issue we've faced in this battle is that of appetite, vomiting, and the lack of growth that has stemmed from the poor nutrition.  If you've seen Amelia in person since her illness last October, you might have noticed that she's much more pale and thin than she used to be, and hasn't grown much in height since (she has grown maybe 1 centimeter in height since last October, and has continued to lose weight...about a quarter kilo a month).  In the last few months, we've found a few surprising at-home strategies to combat this problem.

The first is perhaps the most obvious...yet we missed it for so long.  During post-seizure recovery and partial seizure activity, Amy has a hard time chewing and swallowing, and frequently vomits because of her lack of coordination that affects her swallowing ability.  About a month ago, we started using our baby food grinder...the Happy Baby Food Grinder, vintage 1979, passed down through my family and finally to me.  Grinding her food...especially at supper time, when the stress of the day builds up and she is more prone to seizure activity...has about doubled her food intake, and cut down on the vomiting episodes during mealtimes. I would highly recommend grinding, pureeing, or purchasing ready-made baby food to other parents facing the same problem.  Amelia is one of those rare cases where she appears high functioning, but in reality experiences drastic deficits in her motor skills, coordination, and reflexes that are transient.  The transient nature of her deficits in turn makes it difficult to determine how to treat her at any given moment...like the average almost-4-year-old she is chronologically, or the infant she can sometimes morph into due to seizure activity.

Infancy.  I remember Amy's chubby infant days so frequently and with such longing.  Fecund with possibility.  She weaned herself at just before 12 months, a few months before Caleb was born, and long before I expected her to.  I have always regretted her weaning so early - years before my other two girls weaned themselves shortly before age 4.  I felt it was my fault, because I know I pushed her away and put her off many times because of pregnancy-related tenderness, and my own busyness with school and planning for a new baby.  When I got pregnant unexpectedly post-tubal last fall, I immediately longed to nurse that baby because I felt like it might help me heal the wounds from Amelia's early weaning and the cancer-induced weaning of Caleb at 7 months of age.  Then the baby died, and I wondered what God could possibly be doing.

In April, my milk started coming in for that baby.  I had a breast biopsy because the milk leaking seems so odd.  Most women...even those who've nursed multiple babies...don't apparently get milk for a baby they've miscarried, at least according to Western medicine.  A few months later, the reason for that milk suddenly became obvious as Amelia started asking (always during or just after a seizure) about nursing.  Wondering how old was too old to nurse.  Wondering if children her age ever started again.  I knew immediately that it was just a matter of time before she asked to nurse.  I talked it over with Aaron, my mom, a friend, and prayed about it.  And decided there was absolutely no reason not to do it.  Sure enough, she asked.  And I said yes.

To tell the truth, I thought she would have forgotten how.  I also thought she might bite me.  But she didn't.  She latched on as if she had been doing it all along, and from that day, in the end of July, she has nursed several times a day, always either during or just after a seizure.  Most people today are aware of the nutritional benefits of breast milk, and it's unique properties that aid in motor development, brain formation, immune function, and protection later in life from allergies, cancer, diabetes and other diseases.  In Amelia's case, breastfeeding seems to have re-stimulated her appetite, restored her ability to "come out" of long seizures, and improved her mood and ability to interact with others.  She has grown 1 inch since July 30, after growing 1 centimeter for the preceding year.  My milk has come in abundantly, which leaves me with the conundrum of potentially having to dry up a milk supply again in November for my next cancer scan (luckily, with the help of a great lactation consultant at Luther and La Leche League friends, I found this can be easily and painlessly done by drinking copious amounts of sage tea for 1 week).

This has become somewhat of a "secret", because I did not want to go through the social awkwardness of re-lactating for a toddler if Amelia wasn't going to take to it.  As it turns out, nursing is the perfect thing for her and I at this point, and now I am ready to tell others about it.  I am fairly confident she will continue to nurse for as long as I can do it.  Amy is pretty sensitive to the opinions of others, so I would ask that, if you have questions about this process or want to talk with me about it, please do so when she is not listening.  I don't want to discourage this perfectly natural nursing relationship in any way.  Her neurologist is on board and thrilled, calling breast milk "the perfect food for the brain-injured child" and encouraging me to consider pumping breast milk or accepting donated breast milk for Amy to drink from a cup if I should decide I no longer want to physically nurse her.  He was very concerned that he might have to put Amy on an appetite stimulant, which could be dangerous for her brain healing.  He is thrilled that she is gaining weight and inches, and seems to be making some neurological gains as well.

Lastly, this new nursing relationship has been incredibly healing for my spirit.  Mostly because there is something tangible I can do to help Amy through her toughest moments.  And that "something" is the love literally pouring out as we snuggle and nurse.  She is so content during these times, it is as though I have regained something I feared I may have lost forever.