If you remember us talking about trying something new called the Constraint Induced Method, where you put the strong or good arm in an oven mitt, while forcing the weak arm to work at certain tasks. Well, we did it for a couple days and could totally see her right arm getting stronger, BUT we noticed her left arm started to get really tight and straight, even curling at the wrist (like her right does). At this point, we also received a second ankle boot for Emmy's right foot because she points her toes all day (not on purpose) and it is causing her achilles to tighten. So we put on that boot and YIPPEE, her right leg was walking! Because it was just so amazing, I, of course, focused on making her walk twice a day for about 10 min each time. But the more she walked, the less her arms starting working. Her walking is improving, even having a really nice rhythm, in spite of her left toe pointing inward. So now, here we are and she is still talking (when she stopped talking she was relapsing), but her arms won't relax or do anything for her. We, as parents seriously feel like we lose every time we try to teach her something new. It is really disheartening. There is one blessing of something we did. The Hyperbaric Oxygen Therapy worked, at least internally. In 6 weeks, her MRI showed improvement in the lesions that are on her white matter. Meaning the oxygen aided in repairing her white matter, which is a cable cover for all of her neurons! I really wish we would have seen more of that healing appear physically, but I am really happy about that!!! We will most likely go for another round of oxygen once all of her therapies are finished.
So for school this year, we decided to put her in Classical Conversations, along with the other kids. I really feel like she needs to be around peers her own age and start to use stress management techniques (she usually falls asleep during stressful situations) so we can start doing more in public. She is so smart and knows all the answers but I have to draw for her, trace for her, color for her and even pick her up to participate in many of the activities. That is alright, but I just feel so badly for her all the time that she has such a hard time. And it is so wild, because the tutor will ask something and Emmy just shoots her arm straight up to answer or participate, because her brain knows she can do it, but then when she goes to speak or move, her body won't respond. It is just so painful to watch but also humbling because she still tries despite knowing the outcome.
So this is what will hopefully be happening in the near future. We will head to Hope Therapy in Richmond. They will assess her and say she can come to the 2 times a week sessions as soon as we come back from Carrick. Hope is more of a rigorous physical therapy that works parts of the body repetitively to rewire parts of the brain. We want to do it after Carrick because Carrick uses techniques to help restore her vestibular system (inner ear/balance) and activate her basal ganglia to hopefully stop the dystonia and strengthen the right side of her body. Both are going to be very hard for her so please pray that the therapists and doctors are merely vessels for God to just get her the healing she needs to walk and play and write again.
I do a lot of reminiscing lately about how Emmy was just so talented in EVERYTHING. She could draw pictures that blew her older siblings out of the water. She could play piano by ear. She could dance and move her little arms in perfect synchronization and movement and her little body was so agile and flexible during gymnastics. But I think what we miss the most is her conversations. She was so in tuned (still is) with how people feel and just had a heart of gold and cold make you feel like a million bucks. That's probably not the best thing to do, but our entire life is still turned upside down. There are no breaks, going out on real dinner dates, leaving the kids with Ella to run to the store (without worrying), taking quick road trips to Jamestown, none of it. I know feeling sorry for ourselves will not make anything easier, but the entire family has been changed. If you have heard me talk about essential oils you will understand what I am talking about next :) I bio-scanned Everett the other day, because he is so angry a lot! And his number one oil was Forgiveness. I could have told you that a long time ago because I think each one of the kids are resentful. They get no one-on-one time with Randy or me, we can't plan things out because every day is different and if when we do a night out with a certain kid, Emmy says we don't like her because we leave her behind. I really do not know how parents of disabled kids do this year after year. Emmy still has separation issues at bed time, clings to one parent, then treats the other like they can't do anything for her. The stress is almost unbearable and I am praying PRAYING that the next month will show us some hope in her prognosis.
So if you are still praying, thank you! We truly feel like everything that happens from this point is going to have to be supernatural and completely God-given. The healing, the restoration, the forgiveness, all of it. Updates will happen once we get going on her therapies! I am sure I will post daily updates in Dallas because they say that changes occur daily!!! Hoping and expecting the best!!!
If you are still invested in helping with Emmy's treatments not covered by insurance, you can visit www.youcaring.com/emmystrong
