Assessments Gallore

So, I assumed I would be able to update throughout the week, but that didn't happen. Last week was a whirlwind. So, I'll start with a cute picture of Emma and Josh with Uncle Chris. Great picture!!! They love playing with him. Now, I'll just jump right in...

Monday we met with the nutritionist and eye doctor. Josh's eyes are developing fine and the eye doctor has no concerns. Good news there. The nutritionist was amazing. She was a wealth of information and has so much experience dealing with kids like Josh. I went in with no idea what to feed him and left with several ideas. She also went through all the supplements with me and told me when each should be given to him and how they should be given to him for maximum absorbency. Great information to know!

She was very optimistic about Josh and further explained the results of the nutritional testing we had done through our pediatrician (this nutritionist used to perform this testing for our pediatrician). Some of the things she noted are that Josh is not absorbing the animal fats that he's eating and that head-banging is usually linked to a vitamin E deficiency. She also looked at his poor legs, which are covered in sever eczema patches and scabs. She said that his foods on his allergy test that were rated on the lower end could be introduced next week one at a time. We'll definitely be trying eggs back first tomorrow. That's been a thorn in my side!!! I have many failed attempts at trying to make baked goods for Josh that just failed. Before we went to Austin last week, I stayed up Thursday night to make waffles to have for breakfast on our trip. I expected it to take me about 30 minutes. I spent 1 1/2 hours, mostly prying the waffles off of the waffle iron and they were not the best consistency. Previously, I had attempted blueberry pancakes that wouldn't burn! The middle stayed gooey, so we let them stay on the pan longer. Then it became a curiosity for me and Danny. After 20 minutes the stinking pancakes wouldn't burn. Sigh. Another batch for the trash. Apparently, many "allergy free" mixes are not friendly with egg substitutes and actually need the real thing. I had several types of alternative flours made by the same company that makes an egg replacer and most of their recipes on the box have an asterisk saying they don't work with the egg replacement and require real eggs. Unbelievable. Anyway, I digress. I finally found some options and you'll be glad to know Josh hasn't been starved to death. :)

Overall, the appointment with the nutritionist was the best of the week and she added some supplements to our regimen to help Josh rid his body of the mercury. We'll meet with her again next month to have her adjust his custom vitamin blend and to more aggressively work to get the mercury out of his system. To give context, Josh's issues are all related. The yeast in his digestive system and his body's lack of digestive health causes everything that enters his body to not be properly absorbed. So, a lot of toxins leak from the digestive system into the bloodstream, leading to neurological issues. High levels of mercury and high levels of digestive yeast are common traits of autism. You can't just clear out the yeast and have all be well. Until the mercury is out of his system, the yeast will continue to overtake his digestive system. We have been working on ridding his digestive system of the yeast, then next month we'll more aggressively go after helping his body to detox from mercury, then continue to help his digestive system balance out the levels of good bacteria and handle detoxifying itself.

Tuesday, we went to an ABA therapy center for an assessment and tour. It was a nice place and they work with kids individually to teach them social, play and communication skills. We went home and felt in turmoil a bit. Seeing kids that seemed worse off than Josh made us wonder if it was too extreme for him to spend two days a week there, or were we just wearing our blinders again? We often find ourselves talking us out of Josh having any developmental issues. I had read about this center at the beginning of all my research, but since then, they became in-network for our insurance. In Texas, a law was passed last year that requires insurance companies to provide treatments for autism spectrum disorders, including ABA therapy (previously autism was handled as an untreatable mental illness). So, now some of these centers are taking insurance which was not the case as recent as a few months ago. After back and forth, and some clear signs after prayer, we feel it is definitely worth a try. I'm now very excited about the prospect of him getting individualized treatment, their parent training program (so I can follow the same methodology at home), and am hopeful that this could be the treatment to help Josh turn the corner he's so close to right now.

While the lady who did Josh's assessment talked with us, the director started to work with him rather than just letting him play freely. They were working on taking turns (which I've tried at home) and Josh was not too pleased with her, but she didn't worry about whether or not he looked like he was having the time of his life. She worked so well with him and it gave us a taste of what things he would do there. We were impressed by the interactions between the therapists and kids during the tour. Once we got over our acceptance issues, we've become more excited about this opportunity. I will be getting the referral from our pediatrician tomorrow and schedule when we can start.

Wednesday and Thursday Josh had is occupational and speech therapy evaluations. Nothing too surprising came out of that except more realization of Josh having more motor skill weaknesses than I realized. We've been given many exercises to build his arm and leg strength, work on balance, as well as his fine motor skills. It's amazing all the things you notice once some one points them out to you. I feel I have to be much more careful with Josh when we leave our house now. On one outing last week, he took a spill on steps that I don't think he even saw. I get comfortable with what he can do at home and it is a little scary when we get out how quickly things can turn.

In terms of speech, she assessed him just below the "normal" bell curve. First of all, he's made HUGE progress in the last few months, and significant leaps since we've started his dietary and supplement changes. His eye contact is clearer and he has a strong desire to learn what to say for situations. I expressed my concern about his language not seeming conversational and natural, but memorized. He has an outstanding memory and attention to detail, but seems to lack the understanding of emotions. He knows when he sees a candle, fire or flame that he says the word "hot", but I don't think he understands what "hot" means. He bites, then says, "no bite," but he doesn't seem to understand that it hurts to bite. He can see a fan and will say if it is on or off and that it goes "round and round and round," but if we were to ask him if he saw a fan we wouldn't get a yes or no. For his speech therapy, they are going to do a combined occupational/speech therapy session and one individual speech therapy per week.

We ended our week on Friday night with a reception for our college friend who was ordained a priest the previous weekend. He said Mass at our friends' house and we had dinner afterward. Yesterday, we had a baby shower for my good friend, Jennifer. Our daughters were in daycare together since they were 1 and have literally grown up together. She is expecting a girl next month and we can't wait to meet her! I always enjoy baby showers and we had a good time!

Saturday evening, we had some friends over for dinner who hadn't met Kate yet. The husband went to high school with Danny and was in our wedding. They just moved to Dallas from Atlanta and we've enjoyed getting to know his wife more. During dinner, she asked more about Josh and it turns out she used to be an ABA therapist in college! We were able to ask her a few questions and some of our concerns were addressed. It was great to catch up with them and we'll enjoy having them back in Dallas.

This was an exhausting week, but a great one. It's nice to have things moving on treatments for Josh. Danny and I have had some wonderful talks and have been getting each other through the ups and downs of accepting the situation. Mostly, I feel a sense of peace that things will be fine. It has been so hard to go through the process of accepting this diagnosis and trying to figure out how we are supposed to treat it all at the same time. We have been faced with so many decisions to make without a checklist of what we are supposed to do next. I truly believe that God has just taken over for me the last few months. I have had really strong feelings on calls to make or places to go, and each has led me to the next step. People have said things to us that have filled puzzle pieces we needed, referred us to resources, shared information they knew and have lifted us up in prayer. Our college friend who was ordained a priest last weekend gave the most beautiful blessing to Josh Friday night. He didn't know many details of what we've been going through, but his carefully chosen words to bless Josh brought tears to our eyes and an overwhelming sense of peace. Particular words he said were straight from my recent prayers and God has really been showing me that he is in control and will take care of us.

The schedule for this coming week is currently a blank slate. Ahhh.