Time to Update

So much has happened this summer. I have decided that it is time to update. I have avoided it because I really didn't feel like I had the energy to write about it. Now, I am feeling motivated. 

The "A" Word

During the summer I became motivated again to push for a diagnosis for Luke. I knew that one diagnosis would not be the end of our story, but we had gotten to the point that we needed some financial help with testing (medical) bills. I had talked to Luke's doctor about the autism diagnosis, but she was not comfortable with giving that diagnosis. At the beginning of the summer, we got the diagnosis of "an unknown syndrome with autistic features". It turns out that our insurance company would not take that as a diagnosis. So, at the end of the summer we went to the neurologist. I was shocked when we didn't see the doctor. We ended up seeing the nurse practitioner. I was upset at first, but it ended up being a God thing! At the end of the appointment we scheduled another EEG. We also were told that we needed to have a sleep study performed for possible blockage apnea. We were told that no one would take our insurance, so we would need to pay $650 for the study. I am still looking for a place that will cover this. The last thing we were given was a diagnosis! We finally received the autism diagnosis! I was so relieved. Now, we can try to get ABA services covered. That's a whole other issue! Autism is definitely not the end of Luke's story, but I was relieved to have something so I could move forward with pursuing social security disability and get Luke on the Medwaiver waiting list. I am still working on that at this time.

The First Day of School

As you can see from this picture, Luke was quite annoyed that he had to wake up so early. He went on to have a great day at Benny Russell Elementary. This year is going to be an awesome year for him!

EEG's and Doctor Appointments

Luke was scheduled for an EEG this past week. He screamed from the moment he arrived until his Mimi had had enough. She has rescheduled his EEG for a later date when he can be sedated. 

He had his well-child check-up and we found out that he had gained a pound and a half since May. Go Luke!!!

So many reasons to celebrate and so much work ahead! 

GI Clinic and Children's Hospital in Birmingham, Al (Trip #1)

We saw a doctor at a GI clinic on Thursday July 14th. Marty, Luke, and I traveled up to Birmingham that 

day. It was a really peaceful trip. We went to see this specific doctor because we had concerns about Luke's digestion or lack-thereof. His stomach just gets so big and hard as a rock. He also passes some pretty obnoxious gas. 

The GI doc suggested that we have a "breath hydrogen test" to test for intolerance of fructose. Long story short, we ended up staying the night in Birmingham and the test was performed the next morning at 8:30. Luke had to fast overnight. Once we arrived, a nurse (really sweet lady) put a mask on Luke's face to collect his breath. She did this twice. Then, she gave Luke a really concentrated amount of fructose in his sippy cup. Every 30 minutes after, she would do the mask thing twice. 

Several days later we found out that he is, indeed, fructose intolerant. He can no longer have corn, foods with fructose (or high fructose corn syrup), corn syrup, tomatoes, peaches, cherries, and a few other fruits that I cannot recall. The number one thing he can't have is sweet potatoes and carrots. These two veggies have been a staple in his diet since he was an infant. 

Over the past two weeks we have adjusted his diet. He is also taking Flagyl (a medicine to rid his intestines of bacteria). The medicine has really helped and I have found out that Luke's body does not tolerate peas well at all. We are still working on the diet. I think we will continue to see improvements. 

Thank God that the doctor was knowledgeable enough to suggest the fructose intolerance test. Now Luke is enjoying gluten and dairy! He loves whole milk :)