4th and assessment results

So, I'm off to a slow start on my July blogging, but am getting back in the game.

We had a great 4th of July. The kids all wore their red, white and blue and Emma was able to thank a service man in Target who was in uniform. He was really nice to her and it was the perfect thing to do on the 4th. We did most of our celebrating on the 3rd, starting with a visit to my parents' house. We brought the blow up pool and the kids had a blast in their back yard. They cooked a great lunch for us. That evening, Danny's parents brought dinner over for us and we ate really well, again! Both of our families were great to us and gave me a nice break from cooking for the day. We watched fireworks from our front yard. I have always loved fireworks and have great memories of watching them growing up and hope to create some of those same memories with the kids as they get older. For now, we'll settle with Emma thinking it's awesome to see our neighborhood fireworks from the front yard.

I think Emma is starting to get a little bored with being home, but when I suggest some new things to do, she isn't interested. She's been acting out more than normal and I'm not sure if it is just part of her age and becoming more independent with her words and actions, or if she is using that for more attention now that Kate is here on top of our lives being turned upside down with all that we're doing for Josh. We'll figure it out and I pray it is just temporary. She is a sweet little girl and I don't want to spend my days punishing her more than praising her. She and Josh can be quite a comedic pair (see below). Last week, the kids wanted an umbrella stroller from the garage and were pushing it around the house. Josh went and got Emma's bike helmet and brought it to me to put it on. I put it on him and he went to sit on the stroller. I asked if he wanted me to push him and he replied, "No. Emma." He wanted Emma to push him. She was "busy" doing art, but he was all smiles waiting for her. I made her come see him and asked how she could resist playing with that smile?!? She obliged and they had a blast!

Kate had her 4 month checkup this morning. She's up to 17 lbs. 3 oz and 26" long. She was in the 30th percentile after birth and is finally in the upper 90s like her older sister and brother were. She's very healthy and looks good! Josh has been showing a lot of affection toward her lately and really wants to give her kisses. Thankfully, he is much more gentle with his touch than he used to be. I tried to capture a kissing moment while Kate was in my lap. So sweet!

On the treatment front, we are all set to see an autism specialist in Austin in September. We will be heading to Thoughtful House in mid-September. After visiting with our nutritionist last month, she expressed some concerns with the vitamin dosages from our pediatrician. It really woke me up! I believe we are on the right path to treating Josh, but I want an expert to oversee Josh's treatment. We are working with mega-doses of vitamins and that can be toxic if not fully understood. I have done quite a bit of reading from the doctors at Thoughtful House and think that's the right place for us to be. My gut says our nutritionist is top notch and I had her re-work Josh's vitamin prescription, but I need someone on the medical side as well. I started the process to get Josh seen at Thoughtful House, beginning with about 2 hours of online forms, a complete medical, nutritional, developmental description of Josh. Since then, I've had a call with one of their coordinators to review all that information and gather more details. I faxed them all assessment and lab work we've done and also did a phone developmental assessment with them. I'll have a phone appointment with their nutritionist in August, then an exam with a doctor in September. We're looking forward to it. Until then, I'm continuing to work with our nutritionist here.

We received a lot of assessment results this past week. I requested the written reports from Josh's occupational, physical and speech assessments to send to Thoughtful House. Wow. Eye opening. I was most surprised by the physical therapy assessment. I always thought he had the fewest delays in gross motor skills (he runs and climbs, right?). However, that assessment ranked Josh in the 3rd percentile for gross motor skills based on the PDMS-2 assessment. In age equivalent, his skills ranged from 11 to 21 months. I was shocked. She had verbally told us the areas he needed work, but this is a much bigger gap than I pictured in my mind. We've been doing his exercises and seen great improvement so far. We'll see what the PT sees at his appointment next week.

From his occupational therapy assessment, his fine motor skills were in the 12th percentile, age equivalent 22-28 months. His speech percentile is 13th, but is only considered a "mild impairment." I don't get that, but I guess that is because he is pretty functional especially with his receptive language (he's come SO far here in the last 6 months!). We had been waiting to get on the schedule for all three therapies and there has been a hold up getting insurance approval for speech. I'm following up on that, but went ahead and got PT and OT scheduled to start tomorrow. OT will be on Friday mornings and PT on Wednesday mornings.

Josh is still enjoying his ABA therapy on Tuesdays and Thursdays. We met with his therapy counselor this week to go over their assessment results (VB-MAPP assessment). It tests several categories of skills expected by 18 months, 19-30 months, and 31-48 months. A child is set to attend a "typical" pre-school after passing assessments in all categories in the 31-48 month range. Josh had 3 categories in the 18 month level with gaps, the majority of categories in the 19-30 month were lagging, and he had only a few skills met in the 31-48 month grouping. Based on these results, his development plan was created and we'll get feedback on his progress every therapy session.

Honestly, it's a little alarming to see these assessment results in writing. We've been having so many more good days with Josh and we see so much progress. We often revert back to talking ourselves out of there being a problem, he's just a little delayed. So, we need these reality checks to keep us motivated to seek and provide treatments for him.

Josh is improving SO much! His fits and tantrums are significantly reduced, he is constantly picking up new words, his eye contact is improving, his balance is better. We have much to be thankful for, including the thoughts, prayers and support of our friends and family!

A week of appointments and promise

I'm on to the start of a new week. Last week, Danny was in Chicago for the week attending a week-long marketing course at the University of Chicago. It was a great opportunity for him and I truly appreciated all did to help out before he was gone. But I sure am glad to have him home! I am very thankful that my parents were ready and willing to help come over and stay with me to help out, as well as Danny's mom helping out one evening. I would have had quite a hard time without their help last week. Dinner and bedtime are the craziest time, when everyone needs Mommy at once! We had quite a bit going on with Josh last week. The first behavioral counselor who came out a few weeks ago did an initial autism questionnaire for Josh. I got her results that they recommended he get further evaluation based on the results. We were doing everything recommended already, so nothing big there since we were reading more and suspecting Josh is somewhere on the PDD (pervasive development disorder) or autism spectrum. Josh had his speech therapy appointment on Monday. That is the most I have seen him interact with her! He was definitely showing off and very playful and affectionate with her. He is using several 2-3 word phrases on his own and is extremely receptive to learning new words and phrases from us. Also, since her last visit, Josh has started verbalizing shapes and colors in addition to having a strong desire to count and recognize letters. I am excited about his attempts to talk and see improvement each day. I often wonder if he's known all these things for awhile and can now just let them out. Either way, we're encouraged and I love how he turns almost everything he sees into a counting game. On Wednesday, we had our appointment with Josh's pediatrician for a developmental assessment. I brought in my list of concern areas (from first post) and mentioned that ECI said we might need a referral to a developmental pediatrician or neurologist. Her take was that we know he's somewhere on the spectrum of autism/PDD/sensory integration and that spending time down that path would get us a diagnosis and a label for it. She has found that looking at it from a biomedical level, we'd have a shot at healing him from the inside rather than just getting a label and additional therapies. She had the results from the lab work she recommended earlier and went through them together. The lab work covered oxidative stress, organic acids, amino acids, essential fatty acids, and toxic and nutrient elements. Wow! There were several abnormalities. Most notable were a high yeast level in his digestive tract, vitamin B12 deficiency, as well as a high level of Mercury. She prescribed an anti fungal medicine that we started the next day and the following week we should get a custom multi-vitamin to start re-balancing his body. I can't explain to you how far off some of these were. The imbalances were so extreme, not just out of the normal range. I have a million more questions than we had time for and as we're reading and absorbing this all more, I am writing them down for another appointment. She said these imbalances are linked to his behavioral issues and she's seen success in treating kids much worse off than Josh. I asked her if he is in pain or uncomfortable since sometimes when he's crying in his sleep I've thought he seemed in pain. She said she thinks they are and mentioned a severely autistic child she was treating who screamed constantly and was definitely in pain. Recently, he said goodbye to her by name when he left her office. So, there is much promise in this path. Last appointment of the week was with the behavioral counselor on Friday. She observed Josh and reviewed my logs of Josh's sleep and behavior patterns. We talked through my concerns and she gave some great suggestions on how to handle is tantrums and encouraged our distinguishing between a sensory problem and a two-year-old fit. At the end of her evaluation of Josh, she found his emotional development to be normal and we do not need regular visits from her. She reiterated the need for him to see an occupational therapist to address sensory integration problems. Our request is still being processed by ECI and hopefully we'll be able to get that scheduled soon. If ECI is backed up, I'm planning to pursue seeing one via a referral from our pediatrician. The sensory development issues are really starting to become more pronounced. He is sensitive to things he never was before. For every bump in the road, he lets out a little cry. We explain every time that it's a bump and everyone in the car says, "BUMP." Hopefully, he'll start saying it too rather than crying. So many sounds are bothersome to him, even ones that we can barely hear. He can hear a garbage truck from blocks away, runs around the back yard crying when a neighbor turns on their weed whacker. He and I were watering plants together outside. I'd fill up a pitcher and he'd fill up his cup from the hose. He'd cry every time I turned on the water. I'd explain it and even have him say "Ready, set, go." He'd still cry regardless of how high or low the initial water pressure. These are just a few examples, but I do see this area getting gradually worse and want to focus treatment in this area next. By far, the biggest news of the week was the results of the lab work and the promise that goes with that. With my week being so hectic, I didn't get to do much research. Thanks to my dad, we have several resources now that tie to this line of treatment. I am extremely thankful for the path we're on. We're blessed to have a pediatrician seeking this type of testing and treatment and really think it was God's plan that we ended up in her office two years ago. Based on her encouragement of this testing, I think we're months ahead of where we would be otherwise. In my next post, I'll share some of the links from my dad, our feelings as we adjust and digest this all, and I'm sure Emma will provide some entertaining stories as well. She's mommy's helper this week since her school district is closed due to the swine flu.