Today's Appointment for Maddy

I don't normally do this, but since so many prayed for our sweet girl today and since the appointment was very intense, I thought this may be the best way to process it. I have had a few phone calls about it and since I can't talk to everyone, I thought this may be the best way to get the info out to everyone that may ask without having 100 phone calls :-) (With that said, the texts, emails and calls have been encouraging!)  Thanks for your concerns and prayers! This is a letter Nathan wrote to our elders and I feel like it sums up our appointment very well. He is much better at presenting information than I am, so here ya go:

Nathan's email:

This afternoon Emily and I spoke with Madeline’s pediatric neurologist. 

The current state of things: Madeline has had consistent seizures for the past 3 months. In the past 20 days she has had 6 seizures, or one about ever three days. She is on her 4th medication, and statistically after the 3rd medication the chance that another medication will help is 3%. 

The Outlook: The doctor said that it seems as though Madeline’s epilepsy is spiraling. When she sees this, it normally means that the medication is losing its effectiveness which is not uncommon. The longterm effects of having 2 seizures a month is to not be a ‘functional adult’. Madeline as an adult would not be able to drive a car, she would have significant motor skill, memory, and verbal challenges, and would experience significant emotional swings. 

The options: 

1. Diet change: There is a diet that the doctor said has been tried with some success, but that since Madeline is not eating through a feeding tube, and the fact that it is apparently awful food, is a ‘high cost’ (to lifestyle and relational currency with Madeline) / ‘low effectiveness’ option. 
2. Implantation of a device: There is currently a device that can be implanted beneath her skin that would deliver a small electric current that has been shown to be effective in 30% of cases of epilepsy. Unlike medicine, there are no emotional side effects, and the effectiveness seems to increase instead of decrease over time. 
3. Brain Surgery: 

- Note: This option is completely dependent on the degree to which Madeline would be considered a ‘strong candidate’. 

a) Of the ‘strong candidates’ our doctor has sent to Cleveland for the surgery, they are 3/3 for currently being seizure free to this day

b) There is currently mixed data from the MRI’s as to where the problem area is in her brain - surgery involves removing that particular area. The success rate for strong candidates is between 70-80%

c) There is a significant question in her experience as to whether or not Medicaid (which our kids are on) would cover an out-of-state surgery. She doesn’t like the doctor in Charleston, and the guy in Greenville is new. So. No. 

d) This option would require at least a one week stay for Madeline in the hospital. In this time they would cease medications to run tests to determine her strength as a candidate. 

e) The doctor repeated: ‘This route is very, very, very expensive.’ 

Other factors: 

1. My mother died during a ‘low risk’ brain surgery. 
2. SOMEWHERE IN THE MIDST OF ALL THIS: We are, up until now, in the process to be licensed as foster care parents. So. There’s that. Because life isn’t crazy enough. So wisdom to lead and love my wife who’s passion is for the orphan while simultaneously slow to realize her limits, and simultaneously that I would have wisdom in following the Lord’s leading. 

The Lord loves my daughter. My mind trusts him. My heart bleeds for her. Thus, conflict and tears and much distraction. 

Practical needs: We’re good. 

Prayer: Yes. For everything. 

We would continue to ask for your prayers as we take one step at a time and pray that God will continue to open doors where He wants us to walk through and will close doors where we should not tread. God is faithful and will lead us. At this moment, we plan to walk toward getting the testing so that we can know where Maddy is on the spectrum and then trust for God's direction after that. We would covet your prayers as we walk through this journey. Pray:
1. That we will trust in God's hand and direction rather than trying to make our plans on our own.
2. HEALING! We have been praying for that and know that God is able. We trust His plan in what that looks like for our precious girl.
3. That if surgery is the option we need to take, that the tests will make that clear.
4. Wisdom in how to love each of our kids they way they need to be loved as we walk through this.
5. Strength as we watch the ups and downs of how this unfolds. Watching your child struggle is the worst!!!!