- I'm a mommy to four unique little spirits who challenge me daily and help me grow! Married to my best friend for 12 blissful years. Stay-at-home-work-my-ass-off mother of four. Han Ban Bu Belt in kwon Shu karate. Driver of mauve colored Town and Country mini-van...You gotta love the mini van!
Sunday, November 9, 2008
Life in the fast lane
I have decided I'm pretty much writing this blog for myself alone - fact being, I don't really know how to work it, yet and therefor, nobody knows I have it! Ha! oh well, it feels good to get my thoughts out of my brain every now and then even if I am the only one who sees them!
I've spent the last 3 years completely absorbed emotionally, mentally and physically with taking care of my children. You're probably thinking, "wait, Mateya is almost 8 so hasn't she been taking care of them for 8 years, not 3?" True, I have been doing the mommy thing for 8 years, however it's been the last three that include the emotional absorption part. Without going into too much detail...because who has that kind of time!?...I'll give the peanut shell breakdown:
At age 2 Devin still didn't speak so he was recommended to a developmental specialist. The specialist observed him and felt there was more to the issue and recommended an occupational therapist. After a few months he was easily diagnosed as having classic Sensory Integration Disfunction. We began occupational and speech therapies along with intense early intervention. VERY TIME CONSUMING. It didn't take too long for the diagnosis of Autism to be given. But since life was going so smoothly (ha ha) It was almost comical to find out I was carrying twins! To describe the terror in my heart would take the rest of the weekend.
SO..thus began the journey of Devin. The autism, the treatments, the diet, the supplements, the sign language, the picture charts blah blah blah. Meanwhile, and sadly overlooked, Mateya was beginning to show more and more signs of problems. Being so consumed with Devin's needs and the twins made it easy to miss her abnormal quirks. We knew she was a difficult infant but what we didn't know was that none of it was "normal" baby behavior. Now things were becoming more apparent and more in need of being addressed.
After multiple blood draws, urine tests and so forth we were able to see that her little body was in a complete uproar inside! She had so much going on that we couldn't be positive of the extent of the problem. The first thing that needed addressed was a syndrome called Pediatric autoimmune Neuropsychiatric Disorder associated with Streptococcal Infection. (PANDAS) Feel free to look it up if you want an explanation. :) Her case was so advanced that our SL specialist couldn't beat it so he began working with a guy in Chicago and another dude in Idaho. Between the three of them, they came up with a somewhat scary treatment where they shut down the immune system for 5 days giving the body a chance to "re-boot" and fight back. Her immune system had been so weakened that it became necessary to do a food sensitivity panel. She had over 20 hits! We had to completely change her diet - which also meant changing everyone's diet to allow her body to be totally free of any irritants. Once she was somewhat stable we did the immune shut down. No one was allowed inside or outside of our home for 7 days! It had to be completely germ free. We began treatment and held our breaths....It worked! The results came back and the infection was gone. She will have to be on anti-biotics and pro-biotics for the next year to ensure that she doesn't get and infections that could trigger a relapse.
Now we could begin digging deeper.
New blood work showed very high histamine levels (Histadelia) which causes a whole slew of problems in the immune system and neurotransmitters. She is currently on a year long treatment to reverse the damage. We're only a couple months into that treatment so the jury's still out.
As of last week, she has had a return of several tics and anxiety problems. The tics are more advanced than before and are more debilitating to her daily activities. We are now scheduled to meet with a specialist regarding the possibility of Tourette's Syndrome.
This is where I take a deep breath and focus on maintaining my great acting abilities so when I'm hit with the inevitable question of "How is Mateya doing?" I can respond straight faced and not completely fall apart. It reminds me of a line from a movie, "You can't handle the truth!" Ok, that's a bit extreme. But not everyone is ready to take in all the information, and that's understandable! I've had a while to adjust.
I'll end with my favorite quote and current life motto from Mother Teresa:
"I know God will not give me more than I can handle, I just wish He didn't trust me so much."
Amen to that!