Ah, Motherhood: A Lesson in Gratitude

My heart is heavy this morning as I struggle to practice gratitude.  I have been internally weighing whether or not I should go back to work lately. (After the drug trial is over, of course.)  The reality is, however, that I can’t.  I have 2 college degrees, and short of finding something I can do at home (which is proving to be impossible), I simply cannot re-enter the workforce

The reason?  Kara. There isn’t a daycare that services her school that will take her due to her disabilities.  At-home care proved to be a very expensive tax nightmare last year.  This world, with all the advancements they’ve made in the area of disabilities, is seriously lacking in the child-care sector.   There is one daycare in the entire metroplex equipped to care for kids with special needs, and it’s nowhere near close to our house or Kara’s school.  In 2014, the American Community Survey reported an estimated 195,817 children in Oklahoma County alone. Of that, 5% were reported to have a disability.  I’ll save you the trouble of getting out a calculator, and do the math for you.  That’s almost 9,800 children with a disability, IN OKLAHOMA COUNTY ALONE.  And 1 child care center geared specifically towards children with special needs.  We have a problem here.

But alas, the city caters to the typical, the privileged, and to those receiving welfare.  Our family does not fall into any of these categories.  My knowledge of all the resources available to me is exhausted.  Yet my search continues.  I learned from friends I can move her to a different school district.  Or maybe I just hold tight.  After all, we have scoliosis surgery coming up, plus another year-long Trofinetide trial after this phase is over.

I am not trying to come across as seeking pity, or as whiny (well, maybe I’m whining a little).  I am not one of those people who do well caged in, with parameters put on me outside of my control.  You tell me I can’t do something, I’m going to find a way to do it.  But when it comes to my kids, “adequate” or “that’ll do” isn’t good enough.  Especially for Kara.  She already had to endure that last year in school, I can’t have her care that way, too. 

So I sit here, struggling to be grateful that God put me in control of her well-being.  That I get to be the front-running caregiver for her and my twins (which in and of itself is another challenge).  That I don’t need to work (but the spoiled crazy person within me wants to).  That I can sit here and type this while my twins go shopping in the fridge and end up eating slider buns because their mother is whining writing a blog instead of feeding them lunch. 

All will be revealed one day.  God is qualifying me for something great.  All I need to do is be obedient, and be still. 

And pour myself another cup of coffee.

The Night Before the Initial Screening

God was with me today, all day long.  I could feel him from the beginning of the day, all the way to the hotel this evening.  Sure, there were inconveniences and frustrations today, what day is complete without them?  If you go through a day without inconveniences or frustrations, check your pulse, because you probably aren’t breathing.

It started with this Oola post:

Then it was followed by the verse of the day:

Followed by my devotional, which summarized, talked about being a Hope Foot Soldier, and speaking about when we have despair or grief, because through that we share true stories of hope.  One of the paragraphs I like best reads:

"There’s a faith-law that suggests hope comes easy as pie, that it comes natural to Christians who love God.  But the truth is that if we really want grace, joy, hope, and resistance in this life, we will have to struggle like heck to cultivate them.  They easily get choked out by the weeds of evil, suffering, and loneliness.  But I know you’ve seen those crazy green shoots growing up even through concrete.  The truth is, we can grow them on any street.” –Jacqueline Bussie, Outlaw Christian: Finding Authentic Faith

Lastly, the fortune in my fortune cookie from dinner tonight: 

Although, arguably, this could also apply to my dream of becoming a social worker, and making application to OU this fall to do that, but we're going to apply it both places, because it's my fortune cookie, and I can.

Messages of hope, faith, gratitude, and love pounded me today.  So I sit here in my hotel room, with my sister-in-law whom I haven't spent time with in years, having faith that tomorrow is going to work out exactly as it should.  We’ve been praying for this day for years.  God brought us this far, and I have faith that we will hear good news tomorrow.

Thank you all for your continued prayers.  We need steady numbers tomorrow, specifically lower long QTC numbers, at least within range, for her to be considered for the study.  I will post an update tomorrow 

Kara, Rett Syndrome, and the Trofinetide Trial

This is our Kara. On the surface, Kara is a beautiful young lady with captivating bright blue eyes surrounded by long, thick eyelashes. Her smile is genuine, enough to lift even the sourest of spirits. Under the surface, however, lurks a thief. It's name is Rett Syndrome. It has stolen her ability to talk, walk, eat, use her hands and breathe normally. Kara was officially diagnosed in January 2009, after an exhaustive week of testing at the Mayo Clinic in Rochester, MN.

RettSyndrome.org defines Rett Syndrome as a unique postnatal neurological disorder that is first recognized in infancy and seen almost always in girls, caused by mutations on the X chromosome on a gene called MECP2. Rett Syndrome has been most often misdiagnosed as autism, cerebral palsy, or non-specifi c developmental delay. It strikes all racial and ethnic groups, and occurs worldwide in 1 of every 10,000 female births.

Symptoms of Rett Syndrome appear after an early period of apparently normal or near normal development until six to eighteen months of life, when there is a slowing down or stagnation of skills. A period of regression then follows when she loses communication skills and purposeful use of her hands. Soon, stereotyped hand movements such as handwashing, gait disturbances, and slowing of the normal rate of head growth become apparent. Other problems may include seizures and disorganized breathing patterns while she is awake. In the early years, there may be a period of isolation or withdrawal when she is irritable and cries inconsolably. Over time, motor problems may increase, but in general, irritability lessens and eye contact and communication improve,

At 9 months old, Kara stopped meeting milestones, and began the stereotypical hand-movements. We began researching, and knew before we received the official diagnosis that our daughter was afflicted with Rett. The confirmation came via phone call several weeks later, and we were devastated. Wow, I just realized that was over 7 years ago. We sure have come a long way in therapies and treatments, which brings us to Trofinetide.

We first heard about Trofinetide over 4 years ago, and back then it was called NNZ-2566.  Kara's neurologist at the Blue Bird Rett Center in Houston was heading up the initiative. It was originally developed by the Army to help soldiers suffering from traumatic brain injury to help quickly re-grow dendrites in the brain that had been damaged. Scientists discovered a benefit within the Rett Syndrome mouse model, and began clinical trials on adults back in 2014. Measurable benefits were recognized beyond expectations, and the Rett community exploded with renewed hope.

RettStudy.com outlines the specifics of Trofinetide as a modified version of a biologically active part of Insulin-like Growth Factor (IGF-1). IGF-1 is a protein in the human body that helps cells grow. Trofinetide is a modified version of a small part of IGF-1 called GPE, which detaches from IGF-1 in the brain. IGF-1 and GPE play a significant role in regulating the development of the brain and maintaining healthy brain function.

Trofinetide may help to improve brain function by reducing inflammation, regulating the functioning of cells called microglia, normalizing the connections between brain cells and restoring depressed levels of IGF-1 in the brain.

Kara has been on a waiting list for the pediatric phase of the Trofinetide trial since June of 2012. After years of praying, on May 11, I received a phone call from the study coordinator, followed by a pre-screening questionnaire for the study. On June 21, we got the list of dates Kara would be assigned for the study. In addition to receiving the study medication or placebo (we won't know which), the drug trial will consist of 8 trips to Houston for visits every 1-2 weeks, plus the initial screening. Each visit will be from 9am - 3pm, and consist of blood and urine samples, with monitoring of both Rett Syndrome symptoms and heart activity.

Our hurdles for participation are not yet all cleared. Through one of the medications treating Kara's dystonia, she has developed Prolonged QT (a heart rhythm disorder where her heart muscle, specifically within the lower ventricles, takes longer than normal to recharge between beats) . Her interval number is high, but not high enough to automatically disqualify her for the trial. She has to remain within the limits through her screening appointment on July 12, and then we're cleared for participation.  Keep those steady streams of prayers going! We need all we can get!

My initial goal in starting up a new blog was to journal our journey through this initial drug trial. But it will expand beyond that, as there will be another trial phase after this one we hope to get into, as well as her scoliosis surgery. I also want a place to share my epiphanies, thoughts, and prayers as I read through the Bible. Sometimes I get creative and develop recipes in the kitchen, so I apologize in advance, but I may be sharing those here, too. I have a lot of prayer warriors in my army, and for that I am grateful.

And as always, I need more coffee, love!