So many changes...

I want to start by apologizing to everyone for the long delay in between postings.  We appreciate all your thoughts and prayers and still need them!  The last two months have been very busy and Hayden has had many great successes!  I'm sure I won't remember all of them, but will do my best to share.

In September we sent out a lot of samples to be tested.  I will give a brief explanation of what each test showed.

• The first test was a Stool Analysis.  This showed that he needs digestive enzymes daily.  His little body is not able to process much of anything appropriately.  He was also put on Calcium Butyrate to help heal his gut.  (This is a very foul smelling supplement, but Hayden is a trooper when taking it.)  We were very surprised to hear that he had salmonella in his system.  He never showed any signs of having it (vomiting, diarrhea) and up to that point, he had stopped eating his chicken nuggets.  I wear rubber gloves when handling any kind of meat or eggs and use an antibacterial spray in the kitchen afterward.  This was quite perplexing, but was not a big worry since there were no visible signs and it would eventually leave his system.
• The next test was the Organic Acid Test. This test showed that the yeast and fungal metabolites were increased and clostridia metabolites were seen in the urine.  This is pretty common in autistic kids.  Hayden is going through yeast die off right now.  We started with Flagyl to kill the clostridia and spores.  We finished that medicine today, so tomorrow we will start Diflucan to kill the yeast.  Once he finishes the Diflucan, he will stay on Nystatin for a while to keep the yeast from coming back.  During yeast die off, we have been avoiding high oxalate foods.
• The next test was the Porphyrin Test.  This is a urine test that tells how certain metals are affecting cell function.  We call it the Paris test because we had to send it all the way to Paris, France.  This test showed an elevation of aluminum, mercury and lead in Hayden's system.  More than likely the aluminum and mercury came from his vaccinations.  It's hard to pinpoint the lead.  Because he has high levels does not mean that he was exposed to a high level of any of these metals.  Again, his body is not able to process and excrete appropriately.  Most of us can excrete these metals through our hair or in sweat.  Hayden's body is not able to do this.
• The last test we sent out was the Hair Test.  We had to cut Hayden's hair in seven different places and send it to the lab.  We tried to keep his hair longer on top, but it just didn't look right so he ended up with a full buzz cut.  Daddy was pretty excited about this.  The hair test showed that Hayden has displaced normal nutrients, a lithium depletion and more metals.  He is now on a lithium cream and we will do our best to avoid some of the metals.  The doctor gave us some ideas for metal avoidance.  Here are a few based on the metals found in Hayden's system...Antimony is found in flame retardant.  We have already switched his pajamas to non-flame retardant.  (Thankfully, Target carries these.)  We will also be covering his mattress with a hypoallergenic cover.  We have 100% organic cotton sheets, but are thinking about ordering chemical free sheets.  (These are not cheap.)  Arsenic is found in chicken feed, treated lumber and cigarette smoke.  Organic chicken is best.  Our front porch is made with treated lumber, so we try not let him on it with bare feet.  We only have to worry about cigarette smoke when out in public.  Because of all the new smoking bans, this is not much of a problem.  Gadolinium is found in computer equipment, but his doctor said not to worry much about this one.  Tin is found in tin cans and stannous fluoride.  Hayden is still using training toothpaste, but there is toothpaste without fluoride.  Uranium is found in soil.  Again, the doctor said not to worry much about this one.  Hayden is a boy who likes to play outside and in the dirt.  We don't plan on taking that away from him.

Here is a picture of Hayden after the "hair test haircut" and before the buzz cut.

On September 25th, Hayden had an MRI to make sure his brain "looked normal".  I'm not real sure how else to word this one.  His regular pediatrician ordered this test.  This was a very tough test because they had to put him to sleep.  The medicine they gave him made him "drunk" and sleepy.  I can't begin to explain how difficult it was to watch my 3 year old son "get drunk".  The actual MRI was not bad because he slept through it all, but the state he remained in was tough.  He did not go back to sleep for about four hours after the test.  During that time, he was not able to stand or even crawl without falling down.  I was so thankful when he finally went to sleep and woke up sober.  When we finally got the test results, they were normal.

The next day, September 26th was a big day.  Hayden was finally ready to potty train.  He did great and within the week was peeing and pooping in the potty.  I was more concerned about the pooping because of his constant constipation.  I am happy to say that it is not even an issue anymore.  I want to spend more time talking about this on a future post, but I will say the chiropractor has done WONDERS!

Our pediatrician referred us to a Neurologist who is wonderful.  Dr. Kevin Rathke is great with kids and has a lot of experience with special needs.  We went back to his office on October 5th for an EEG.  I was worried that Hayden would not do well since they had to glue over 20 electrodes to his head.  Granny and Grandpa even came down for this one.  As usual, Hayden surprised us all.  He handled the whole thing beautifully.  We returned about a week later for the test results.  Although, it showed an abnormality in the C4 area of his brain, Dr. Rathke was not too concerned and feels that he will grow out of it.  There is a good chance that Hayden will have a febrile seizure if his temperature spikes quickly.  We believe that he had one when he was about 18 months old.  The doctor has given us medicine to administer 5 minutes after he starts to have a seizure.  We are hoping that we will never have to use it, but it's here just in case.  Hayden let me take a picture of him with his electrodes.

We were so happy to get through all the big tests.  Hayden has continued to show improvement in many areas.  He continues to overcome his vestibular fears.  In early September he decided to climb up his rockwall.  It was almost as if he noticed it for the first time and decided to try it out.  When he got to the top, he was very pleased with himself and said "Good job"!

Later in September, his class took a field trip to Jumpin Beans.  For the first time, Hayden played on all the equipment.  He loved climbing up and sliding down all the slides.  We have been to two previous "bouncy places" and he was too scared to try them out.

Every month his class goes to a horse farm called Steppin Heaven.  The owners are wonderful!  They let us come and ride at no charge!  We have been there 3 times so far.  The first time Hayden was so scared, he just about strangled the man who had to hold him on the horse.  The second time he was still scared and fought us when we put him on it, but once up there he did great and seemed very pleased with himself.  The last time, he walked right up to the stairs to get on the horse without any complaint.  He was eager and excited to ride!

At the end of October, Hayden's class took a field trip to the Vollmer Farm.  To my amazement, he tried out everything on "The Back Forty Playground".   For those of you who live around here and have visited the farm, I'm sure you are familiar with the 40-foot underground slide.  We rode it together the first time and he loved it!  He ran back up the hill and was upset that I didn't let him go down alone, so the third time he ran back up and demanded to go down alone.  I reluctantly allowed it and he was thrilled.  One of his teachers took a picture when he shot out the bottom.

This picture only shows the bottom of the slide, but you can visit the farm's website to watch a video of the slide experience.  http://www.vollmerfarm.com/backforty.html

There have been many physical changes and fears that Hayden has overcome.  We are so grateful for each one!  He has also made great strides with his speech and social interaction.  It almost seems like every few days he puts more words together and is understanding more.  He is interacting more with his peers and beginning to have little conversations with them.  His teacher has recently noticed a big jump at school with he and a classmate interacting and talking.  I notice improvements in his speech daily.  His speech therapist recently reevaluated him to mark his progress.  When he started in March he had just turned three.  His receptive and expressive language were both at a 1 year, 11 month level.  When she reevaluated him at 3 1/2 years old, his receptive language was at a 2 year, 3 month level and his expressive language was at a 2 year, 8 month level.  While we would love to see him over the 3 year old level, we are very happy with his progress.  He is speaking much more clearly and his vocabulary has really grown!  Sometime in September Hayden made the change from calling me "Mawny" to "Mommy".  This was bittersweet because I knew he was making progress, but his name for me had been special and sweet.

Our most recent doctor visit was last Friday.  We went back up to Richmond to see Dr. Mary Megson, Hayden's Developmental Pediatrician.  Now that the football season is over with, Dill was able to take the day off and go with us!  While we were there, we met a family who had traveled from Pennsylvania to see her and another family who had traveled from Arkansas.  We knew that she was good due to our first hand experience with Hayden's progress, but meeting the other families confirmed our feelings.  She went over all the test results in detail (I explained them briefly above), and made some changes to his supplements.  A lot was talked about during the hour long visit, but the statement that sticks out the most to Dill and I is Dr. Megson saying..."I think you will get him completely out of the spectrum."  She said this three different times in different ways, but her words are clear.  (I bought a voice recorder to take to the different appointments because I felt like I couldn't remember everything the doctors were telling me when I was relaying information to Dill.)  To say the least, I have replayed her words many times.  I want to be honest.  My heart is still guarded, but I believe that if we can get Hayden healthy (which we are well on our way) we will mainstream him and my hope is that most people will not even notice his special needs if he still has them.  I am committed to his treatment and ongoing success.  My mentor, who is a mother of one of Hayden's classmates, said it the best.  "A stay-at-home mom has a full time job, but a stay-at-home mom of a special needs child has two full time jobs."  Our minds are constantly spinning thinking about the diet, the supplements, the environmental factors, etc.  I will spend some time on a future post talking about the supplements Hayden is taking.  It can be very overwhelming, but they are definitely working to heal his little body.  I am just so thankful that I have the opportunity to stay at home with Hayden so I can spend the time needed to get him healthy.  Dill and I are very thankful for our families who have supported us both emotionally and financially.  Without their help, we would be lost and in debt.  Many of Hayden's appointments, tests and supplements are not covered by insurance.

While we were up in Richmond, my Aunt Pam and Uncle Alan let us stay with them again.  I want to thank them for letting us come and even bring our dog, Tawny, with us.  (We headed down to Va. Beach to visit Granny and Grandpa after the visit.)  They have a beautiful home that looks like a tree house.  Hayden loves to look outside (or inside) with their binoculars.

I still have so much to share, but will do so in later posts.  I hope to do a better job with updating the blog on a regular basis.  Please know that we appreciate all your thoughts and prayers and we are thankful for your support!