Biomedical supplements have been in full effect for the past 2 months. I have been giving Christina the B12 shots every 3 nights. At first she didn't even wake up or flinch, but now she's on to me! I soon as I clean the area, she grabs her butt...in her sleep!!! I make the shot quick. I, as well as most of her therapists, have noticed that her focus, awareness, and concentration are starting to improve. She has also started taking fish oil and taurine (which is supposed to help reduce seizure activity). We see Dr. Sears again at the end of July.
Christina had to have 3 different lab kits done. Two were blood labs (which was a complete nightmare) and the other was a stool/urine kit where I had to collect this and place it in the containers myself. Gosh I love being a Mama!!! I never fantasized about digging in my kids poop and placing it in the freezer in different vials. The price we pay for wanting answers...
The labs in Temecula/Murrieta were horrible. I called these places ahead of time to inform them that Christina has Autism and somehow gains superhuman strength when a needle comes towards her. She literally turns into the Incredible Hulk! They assured me that they had the staff and the ability to draw her blood for the kits. WRONG. All they ended up doing was putting Christina and I (and Andrew) through torture. She got the physical torture of the techs digging in her arms with a needle and unable to stick a vein. Me... I was struck with the emotional piece - and so was Andrew. All I kept thinking was "Why am I doing this to her? What are these tests going to prove?" I wanted nothing more than to stick my arm out and have them take it from me. Holding back my anger towards the people hurting my baby girl is impossible at times. Crying all the way home from an unsuccessful lab draw is really no fun, either. After a tech ruining the blood kit and blaming it on my daughter, Mama had to put her foot down. I was told to try somewhere else. Unacceptable! I told them to use their vials and to get the blood and that I was not leaving without it. They already had BOTH of my kids crying their little eyes out. I know that Andrew was scared for his sister. Not being able to comfort him while I was trying to hold Tina down made me feel helpless to say the least.
Here is why I am doing this to her and this is where I have to suck it up and finish her lab tests - her one lab kit came back showing an intolerance/allergy to food items such as gluten, wheat, barley, rye, peanuts, walnuts, soy, lobster, bakers yeast etc. Finally, I have some sort of answer on paper. But, PEANUTS?!?! She eats PB&J often. My poor baby...it's hard not to feel guilty that I have been feeding her the very things that are making her feel miserable. I will go ahead and admit that I cry a lot out of guilt. Even though I didn't realize it, it's hard that what I was feeding her may have been causing her outbursts. I was going to "try" the Gluten-free diet just to see what happens, but as of now, simply trying it is not an option. Christina is completely free of those food items in her diet now. I can only imagine that she may regress as her body does its "detox" and I am prepared for that knowing that her little belly is healing. Another kit showed that her stomach secretes abnormally small amounts of what is supposed to be secreted in the stool. I am still trying to wrap my head around this one, as I am not a Doctor. Google is my best friend until we have our appointment at the end of July.
We also saw the neurologist last week and are waiting to have another 24-hour ambulatory EEG scheduled. It is our hope that the seizure activity is minimizing and that her epilepsy medication is doing what it is supposed to. It had been a few months since the neurologist saw Christina and she was impressed with her developing language. Since seizure activity is occurring in the part of her brain that controls language, I am hoping that the activity is decreasing.
Whew! We are a busy family. We still have teachers coming in the home 4-5 times per week, sometimes twice per day. She is still progressing at speech, OT, and PT, too. I have actually seen the most tremendous gains out of PT. Christina used to have depth perception issues and was not able to jump, walk up/down stairs, or even walk down a 2-inch step on the porch. She is now climbing the rock wall as high as her therapist will let her and riding the zip-line! Summer school is ending next week and we will prepare ourselves for the journey of the next school year for her. When I look back a year ago and really reflect on the progress, I am blown away. Andrew was interviewed and selected to be a typical role-model peer at her preschool as well. He makes me so proud and I know he is going to love helping out and setting an example for the other kids. He is amazing.
With all of this, I want everyone to know that I am in no way trying to "cure" my daughter because that is impossible. What I want people to know is that I am a fighter for her. I will stop at nothing to obtain every test and therapy that there is available to Christina. And if it's not available... well, I am going to find a way to make it happen. I am her one and only advocate and I am her voice. The pressure of being directly responsible for her progress is absolutely overwhelming, but truly rewarding at the same time. As her Mother, I accept her for who she is, not what I hope she will be someday. She will always have Autism, but there is so much potential in this little girl. And as her advocate, I am going to push her because I know she is just as much of a fighter as I am.
No comments:
Post a Comment