Hi Frango,
Thank you for asking about Heth. Long journey home. Home still being defined, as you well know when walking by faith. Last year at this time, we were just pulling her through six months of traumatic brain injury fm the acute swelling and blindness, in and out of the hospital, life threatening complications one after the other. Her gut got involved and she was not able to eat solids for months; fighting nausea/vomitting daily, violent, dehyrdation/rehydration. Our IV micronutrients a lifesaver and that organic baby food and a baby spoon along w/Dr. B's brilliant approach to healing the gut, kept her with us. Winter brought the onslot of Bart and a sense of square one; however, in hindsight, it was not - we had made progress.
She has worked so hard on neuro cognition and brain remediation. Her pituitary flattened during the Pseudotumor Cerebri throwing her back into hypothyroid.. again. This time, so much more challenging and this time, our approach, fully natural. Her body is beginning to respond, slow but sure from the core out on that. Two steps forward one back. Someone once said that the frontal lobes are to the brain what a conductor is to an orchestra, a gneral to an army, the chief executive officer to a corporation. Without the frontal lobes, the army collapses and the war is lost.. she had lost her ability to make decisions, to think, her coordination gone (this took her ballet). This created a vulnerability that effected more parts of her brain. Organization, problem solving and hey, how about those hormones! We needed a plan of action and our medical debt limited the experts. So guess what we did? We entered training and research...again. From Lyme disease to brain remediation. Who says you have to have a degree? 
We started w/sensation and basic knowledge and created avenues for Heth to learn and be tested in the input, comparison and output of sensations. This was feeling nearly impossible and very frustrating. It was painful to tell the brain what it just couldn't 'get'; but once the message was delivered to the inside a few times, the motivation to fight a new fight, began. From there, we added the executive function comparitives and challenges through games that work different areas of function. Oh, how hard is that?!!! We are at the metacognition zone and this is the most difficult. Esp. as a young adult ready to just move forward but running into the obstacles of the weakened parts. The 'Dysexectuve' part of this is a challange; but we see more and more of Heth. We call it 'noisy brain'. She is learning compensatory abilities and at times must simply remove herself b/c she's used up all of her 'brain energy' for that day. The migraines and head pain she has known - not okay! But, a different Heth is slowly emerging... she's like our butterfly coming through each stage.
The executive function.... seemed lost; but over the past several months we have watched her work so hard to remediate her brain and redeem some of the short term loss. Unable to afford the 3-5,000 neuro psychological testing, we had to think outside the box. The computer has been the answer; retraining a brain can be achieved through occupational challenges and a constant re-entering. Like the permanent appearance of her optic nerves having lost all spontaneous spasming leaving the prognosis for permanent blindness, this too was in question by her team as to whether this could be turned around; but always hoped for. But today her vision is 20/10 in both eyes. So, imagine how my faith has grown. Hers was already in place and unshakable. It made the purpose for cheering her self motivated testing of the brain so much more believable and hopeful..
This Spring/Summer was her MakeAWish. Bittersweet blessings. She gave it back for Lyme research, walked the runway for every child, teen and young adult fighting this battle and did relapse for weeks afterward; in the end is so grateful for how the Lord has guided her steps and helped her over each mountain. We hosted the Lyme forum at the end of summer and again, a setback; but, what a blessing for so many. How do you have regrets. It's not about us. Alot of energy required for both; most unaware of the pain she was carrying. She walked with grace and beauty.
Bart and Babs have seemed to be her returning thorns. The strain of bart - so bad. It reared again over the past few months but is quiet now. Perhaps? 
B/c of her drug resistence now, we attack w/the herbal antibiotics and are constantly addressing deficiencies as they surface, detoxing, stimulating her immune system to create its own antibodies (most impressive when we are ahed of this monster), keeping parasites, virus's, fungals, yeast issues in check and praying for hers and every young person's future, who battles this and knows the sense of loss during these precious years.
She has her permit and we'll keep that status for now. She's a good driver and we decide together when 'today is not a good day for a teen lymie to be on the road'.
She has been a role model for so many across the nation. We are very proud of her convictions and her willingness to serve even while in the trench, herself. Our home a revolving door for Lyme families weekly, an avg. of 10/week now. She desires some social interaction w/young adults her age and has had a couple of opportunities to do so at a college coffehouse that opens once a week very late. This works w/her insomnia.
We are praying about some online courses and provision for that so that she can keep goals in front of her. Its sad, isn't it? The money determines the rate of healing at certain levels. Patience is truly a virtue...and a test.
Her standard w/in her faith remains high.
The pain she has known has been horrific. I wonder at how she has survived. I wonder at how several of our young people who have battled to this depth and more have survived. Each one has great faith and perseverence deep within their spirits and we do know it comes from the Lord and the time is determined by His plan for each one's life. So we pray for strength, comfort, joy and those much needed answers ~ and we are grateful for those who have gone before us and paved the way.
Heth's favorite verses are 'Do not let anyone look down on you b/c you are young, but set an example for the believer in speech, in life, in love, in faith, and in purity.” When sharing her Lyme testimony, she says that (biblical) she is running the race set before her; that she is off and running and she's not looking back!
Yep, and a child shall lead them.
How's that, Frango? Thanks so much for asking. Not used to sharing, don't know how to shortcut it, and appreciate your caring kindness. You are a wise one, in your research, your faith and your words for others. I always appreciate you very much.
Sorry it's so long...
Blessings,
Sojourner (~d)