Friday, November 12, 2010

Emotional Jeopardy

I am sitting here trying to figure out exactly what I am feeling. I just can't put my finger on it. I have spent the last two years trying to figure out Ahren. Much like Schrek, Ahren is an onion. Layers and layers.
I knew before we brought him home that he had serious motor delays. He didn't roll over until he was 10 months old, sit unsupported for many months after that, and didn't walk until he was almost 2 years old. His foster mother was very concerned about him and asked us to pay for her to take him to a specialist in Guatemala. That ortho doctor placed him into boots/braces to support his feet and lower legs. When we brought him home just before his third birthday, he was so floppy and hyper-flexible that he seemed like a rag doll. He could barely crawl up onto the couch.
The doctors here thought it was all due to poor nutrition, lack of stimulation and very little exercise. They thought that he would catch up if only we fed him a super-good diet, gave him lots of stimulation and worked his muscles. So that is what we did and he improved. He grew and gained muscle and seemed to be catching up. But then, the progress slowed, then stopped. And then, certain things seemed to get worse. During this time we were seeking help from our pediatrician, the orthopedist, a pediatric nephrologist and anyone else we thought might be able to help. The pediatrician threw out that muscular dystrophy was a possibility. The nephrologist felt that his kidney issues were a compensatory mechanism for an underlying metabolic disorder. We got an appointment with a world class pediatric neuro-muscular specialist, but it was 9 months away. So we waited, tried over and over again to get in sooner, and tried to be patient.
Finally, the appointment day was here. I was of two minds. My gut instinct was that something was not right. I wanted someone to listen and try and help. But I also wanted to have them tell me I was crazy, an overprotective mama who was imagining things. Seriously, I would much rather be embarrassed than right.
There were three doctors and they spent over an hour taking a history and testing Ahren. They tested his reflexes, his strength, his motor skills, his coordination, his eyes, his walk, his every movement. When they had him watch a finger move back and forth, his eyes twitched rapidly. When they tested his reflexes, the muscles quivered but did not jerk. When they had him walk heel-toe he fell over repeatedly. Over and over again he was tested and they looked concerned.
The top contender, the syndrome that fits his symptoms the best, is a beast. I barely looked at the description and then shut down the page. I do not want to know more unless it is a confirmed diagnoses. I did not fight for three years for this child to give in to any stupid genetic defect. I thought long and hard about sharing this with all of the internets, but I truly believe in prayers and well-wishes. Ahren deserves a life. A good life. A life full of possibilities and the chances to make his own mistakes. To love and live and feel life to the fullest. So for the next two weeks as we await results, I am going to enjoy every second. We are going to have fun. Lots of fun. There will be many, many hugs and kisses. Ice cream for dinner. Chocolate for breakfast. Wear our jammies to the grocery store. Put shaving cream on the dining room table. Life is going to happen here.
And if it turns out that all Ahren has is indigestion (hoping!) then we will deal with the totally spoiled rotten brat we have created and love it!!!!!!


Krystal said...

I am praying for you all right now. Lots of love and hugs.

Susan T. said...

I've been reading your blog for a while and am wishing y'all all the best. Your sweet boy is in the best place possible right now--at home with his loving family!

Tina said...

I've followed for a long time. You have all my prayers coming his way!

Julie said...

Praying for all of you and wishing you strength!!

Leah and Maya said...

thinking of you! and hoping that Ahren has just indigestion from all the fun of the next 2 weeks.

Natalie C. said...

if you want you can call me ANYTIME as you know caleb also has genetic issue, SPD, autism...i can totally relate...281-772-9243

Susan said...

Thinking about you, Wendy, and hoping for the best. I've followed your blog for years and am keeping your entire family close to my heart. Lean on all of us out here anxiously waiting with you for word.