Roller coaster week (or so)

I know, I know, I'm so overdue on my posting, but better late than never. I know I have more than a week to cover and a lot has happened. Last weekend, Kate was baptized! In short, we survived Mass. We normally go to 9:00 for a reason and knew going at 11:00 would push it, but it's not like we got to choose. Anyway, Josh walked into church with his normal, "church, quiet, pray" sequence. Then, he spotted two pews with our family and friends and he went into PARTY mode! Mass started with us at the back of the church. Kate was crying and we had forgotten her pacifier. Josh was climbing all over Danny and the situation was just stressful. Thankfully, Danny's dad walked over and took Josh for us and Kate went back to sleep. Poor baby got messed with all this Baptism stuff every time she fell asleep. Anyway, we survived and looked forward to returning to the back row at the earlier Mass the next week. Our priest does a beautiful job with Baptisms and I felt true joy as he presented her to the community in her beautiful gown and bonnet. Some of Danny's good friends from high school, Dave and Katherine, were in town from Chicago with their 2 kids. Their families live here still and always include us in get-togethers when they are in town. Honestly, I was SO nervous about how Josh would behave at the first dinner at Katherine's parents' house. Most of the time, Josh is sweet, loving and has a great personality. I feared he'd spend the time there screaming, whining, or worst of all, an out-of-control tantrum. When people don't see your kids often, you want them to see the best in them and I fear Josh being misunderstood for what he is. I feared for nothing. He was wonderful and we had a great time then, and again at Dave's parents' house the following weekend. Their families are always so welcoming and treat us like family. I had a very enjoyable time. I think that sometimes God gives me strategically placed "bad" days with Josh to reawaken me to the issues we do have and to give me the fight to help him get better. Every time I've had an appointment with his doctor, we seem to have days like this. After several good days, last week was extremely difficult Wednesday-Friday. I am so thankful that my parents happened to be over on Wednesday to just take care of Kate so I could deal with Josh's tantrums. I can handle the delays and difficulties Josh has, but nothing could be more upsetting than him intentionally hurting himself. The majority of the time, it happens out of the blue and often when I am agreeing with him! The next thing I know, he's on the floor and starts to slam his head on the floor or wall. I don't have words to describe what these fits are like. On Thursday evening, I was just devastated. I think Danny knew when he walked in the door on Thursday that I was to the end. Emma proceeded to tell him that Josh had been banging his head and that she could hear Mommy cry from her room. We had been about a week without dairy and Danny mentioned that it's like Josh is going through detox. My dad has been my master researcher. He sent me the following article which explains how dairy and gluten have an opiate effect, and Josh probably was going through withdrawal. Here's an excerpt explaining this far better than I ever could: "As mentioned earlier, autistic children have abnormal gastrointestinal systems. The reasons for this are varied but include abnormal mucosal barriers from dysfunctional intestinal metallothionein, depleted sulfate which prevents normal healing of the mucosal layer, chronic inflammation from persistent viral infections and autoimmune reactions, injury to the mucosa from abnormal bowel flora and abnormal pancreatic digestive function. This leads to incomplete breakdown of proteins resulting in partially undigested chains of amino acids called peptides, which are usually several amino acids in length. These peptides, which would normally be broken down further or passed through the stool, are absorbed through the damaged and overlyporous mucosal lining. It has been shown that the peptides that most often are at fault are from casein (milk) and gluten (wheat, barley, oats, rye). These children have diminished functioning of an enzyme called DDPIV that is responsible for breaking down these particular peptides. The peptides are absorbed through the intestinal tract into the blood stream and from there are carried to the various body tissues including the brain. These peptides have basically the same structure of a group of hormones called opiates. There are opiate receptors throughout the body but a particularly high concentration exists in the brain. When activated they cause euphoria and decreased pain response. These are the same receptors that bind opioid-like drugs including morphine and heroin. It is hypothesized that the gluten and casein proteins are binding to these receptors and effectively causing an opioid intoxication. That may be why these autistic children seem to crave foods rich in gluten and casein. They frequently will have severe tantrums when these foods are first eliminated or become unavailable. They are potentially going through an opiate withdrawal that often results in and is relieved by binging on these foods. All they know is that eating these foods seem to make them feel much better, which in turn causes them to limit their diet to these specific foods. Unfortunately, chronic opioid toxicity affects learning, social interaction and motor/sensory neurological function. Most autistic children have also shown to have an abnormal immune system response to gluten, casein and soy." http://www.puterakembara.org/rm/Dr_Jepson.pdf The article from Dr. Jepson is very long, but our pediatrician is right in line with his methodology and findings. So, if you're interested in the types of treatment we're doing for Josh and some of the science behind it, this is an excellent article. Anyway, after a few horrible days, Josh's mood slowly got better and we were able to enjoy the Memorial Day weekend. Emma and I went to our pizza cooking class on Saturday morning. I was worried at first when she seemed like she could not be less interested, but once we got to actually making the pizzas, she loved it. She even says she's interested in a cooking class camp one day this summer. Danny and I had an appointment with Josh's pediatrician last Thursday morning to answer any questions we had and to discuss our treatment plan for Josh. She had allergy testing results from blood work we did the week before. Basically, he's reacting to everything since his body is in immunity chaos. We've always known he had a severe peanut allergy, but this test also showed he has moderate allergies to wheat, egg, corn, dog dander, and every tree, mold and grass in the area. In addition, he has a high allergy response to soy and sesame. My first thought was, "What on earth are we going to feed him?" But our pediatrician said he'll grow out of some of the moderates as we get his body functioning properly. Obviously, we can't remove every exposure, but we're doing as much as we can. In the meantime, we're regularly giving him allergy medication to keep him comfortable. His skin looks horrible and if we miss a dose, the poor guy itches constantly. We got our custom vitamin and amino acid supplements at that appointment and went through that regimen. We'll gradually work him up to a full dose and go back for a re-evaluation in 3 months and get our refill at that time. In 6 months, we'll re-do the nutritional makeup lab work again. Also, as part of our treatment plan, she told us to decide where to do therapy (speech, occupational and physical) and she'd do the referral for us. We left with peace of mind and still loving the heck out of this doctor, but as the hours went on that day, I had a million more questions and uncertainties. I prioritized our weekend to first make a plan of action for food. Being hungry is a tantrum trigger for Josh, so it is extremely important to have many foods on hand and ready for when he's hungry. We're basically making everything from scratch for him and our target diet for him is proteins, veggies, then fruits. He can have grains, but too much will just feed yeast so we have to be careful there. My second task was to come up with a treatment plan for Josh's therapies. I thought the dr. said that we needed to go to a treatment center specific for autism to oversee all his treatments and overall health, but Danny understood her to say that we could go to a center like that if we felt his treatment was beyond her. I was torn for days trying to figure out how we'd pay for one of these treatment centers and how to work through the insurance company maze. After much research (thank you, Dad!!!) and thought, I know we're on the right path with our dr. in treating Josh from a biomedical perspective. The other piece of treatment is his therapies. The pediatrician said he needs several days a week of speech, physical and occupational therapy. I talked with the insurance company last Friday about coverage and researched centers that would handle all therapies. All were private, and with us having HMO coverage, we'd have to petition to go out of network and have to handle all reimbursements ourselves. I have felt so consumed by this and felt such a strong need to get this rolling, but the pieces weren't coming together. I started my morning today with prayers that we'd find the right path for Josh. I started calling therapy places and asking questions about navigating insurance coverage. One of the places asked me if I had looked into Our Children's House at Baylor. I had heard of them through another parent, but hadn't made the connection before. I called and they are partnered with our insurance, were so helpful with my questions and have a great program. I contacted the pediatrician's office and the referral is in the works. We should have his initial assessment for therapies scheduled this week!!! Answered prayer, Praise God! Today was a great day! I feel at peace finally that we are on the right path for Josh's treatment plan AND the ball is rolling on it. Josh was in a great mood today, I got some laundry done, dinner was cooked and Danny was able to walk into the house after work to a calm house. I have a sense of peace that I've been waiting for. Now, I can go back to reading and learning more of what I can feed Josh and how I can help his developmental progress at home. To close out on another happy note, here's a picture of Kate's adorable smile. She's so sweet and patient. She waits for her attention, and when she gets it, she loves to coo and talk to us. She's such a blessing and is doing her best to start sleeping longer stretches for Mommy.

Thank you all for your prayers and support! On the tough days, there is no doubt that faith and prayers are carrying me through.