Thank Goodness There Are Only 24 Hours In One Day

Yesterday was a stressful, stinky day.

The stress revolved around two things: Vitamin B and folic acid supplemenation and Kylie's preschool.

It was the first day of Kylie's new developmental preschool. She was excited about going; I was a wreck! I was so nervous. Kylie's cognitive skills are very high, but her self-help and other skills qualified her for this program. At this preschool, they will work on her development in all areas. She will receive speech, OT, PT therapies as well as help in the classroom. It is a wonderful program.

So it was stressful leaving her there, but when I went to pick her up, I got more stressed. The speech therapist was waiting to talk with me. She had retested Kylie. Kylie missed qualifing for speech therapy by just a few points, which was devastating, because she really needs it for pragmatic and receptive language concerns. The sweet speech pathologist at Kylie's developmental preschool was nervous as she told me the results of the test. I think she thought I would start crying. I did not want to disappoint her, so I did cry. No, seriously, I cried. It was too much. I know that Kylie's IQ is higher than other children her age, and therefore it skews the results of her testing. The therapists at her school share the same concern. It stinks to need therapy but not qualify for it. Clay needed therapy for so long but is just now getting it. They are the kids that fall through the cracks. I did not want to go down the same path with Kylie that we have gone down with Clay, waiting each year and doing nothing and watching her get worse. But God was steps ahead of us, and, of course, He had a plan. Today I got a phone call saying that Kylie did qualify for speech based on her oral-motor delay. This won't help with her receptive language disorder, but she will be retested in 3 months, and she may qualify at that time. She also will get an extensive evaluation at the Dennis Developmental Center at ACH soon, and may be diagnosed then, meaning that she will automatically get the speech therapy due to the diagnosis.

Now, stress number 2. But first, a little background history.

For two years, Clay has recieved supplemental Vitamin B12, B6 and folic acid. Kylie started one year ago this past March. We ran out of Clay and Kylie's Vitamin B12 cream at the end of March of this year.  Clay had received supplemental Vitamin B12, B6, and folic acid via injections for one year (Kylie for six months), then we switched to the cream that also contains Vitamin D3 last August. In March, we drew some labs on Clay, and discovered that his Vitamin D level was 18, and his Vitamin B12 level was over 1000, which even though that is high, that is a typical finding in children with oxidation and methylation disorders. I was discouraged and thought that the cream wasn't helping anymore. I was further irritated when I received their OT/PT and speech evals showed moderate to severe delays in all areas. We had come so far, yet ever evaluation was showing that we had so much further to go.

I began thinking that Vitamin B12, B6 and folic acid were not helping anymore. Their progress was at a standstill. It was very discouraging.

I decided to keep the kids off of the Vitamin B and folic acid supplements until we met with genetics. I learned quite a bit.

Three weeks off of Vitamin B and folic acid supplementation, Clay began hand-flapping. He would wave his hand near his head rapidly and hit his shoulder. He would do this unaware that he was doing it. I would call his attention to it, and he would look at me as if he had no idea that he was doing it. He also began to stare up and to the left, as if deep in thought, but I had seen that look before. We met with the geneticist and he wanted to wait another month until we had all the lab results in before we started back on our supplements.

Six weeks off of Vitamin B 12, B6 and folic acid, Clay began stimming. We hadn't seen that behavior in over a year. He also became more emotional at times, similar to how he would over-react before.

Yesterday, almost 8 weeks off of supplementation, Clay had a meltdown that lasted over one hour. He had been crying off and on all afternoon, for a variety of reasons. School was almost out and he would miss his class. He hated the GFCF diet. He loved his autism, and now that he was on the GFCF diet, he had noticed some of his "quirks" were getting better, and he did not want them to leave, i.e. feeling the hair stand up on the back of his neck. It went on all evening. We went to a birthday party at Chuck E Cheese's and he was distracted for awhile, but soon after the presents were opened, I could tell that a full-blown Clay melt-down was going to occur. Fortunately we were home when it did.

I told him "Clay, thank goodness there are only 24 hours in a day. This day will soon be over, and with it all of the anxiety and yuckiness that has occurred. Tomorrow is a new day, with amazing possibilities. God has a wonderful plan. And, by the way, you are acting like this because you need your Vitamin B back." He was OK with that.

I will never take Clay off of Vitamin B12, B6 or folic acid again. The lectures I attended last week at ACH confirmed the benefits of such supplements. We know Clay well enough to know that he needs it. Never, ever again will we get off of it to "see how he does". We know the answer to that.

Last night I ordered the Vitamin B12, B6, folic acid and Vitamin D3 cream for Clay and Kylie. This morning God led us to a wonderful pharmacy here in Fayetteville that will compound the injections for us. And get this- with our insurance, the $300 monthly injections per child (yes, over $600 a month total) will cost a total of $90 for both the kids! God is so wonderful to us! He blesses us with each step we take as we trust him more and more with our children and their special needs.

I have prayed for years that God would guide us. And He confirmed again today that He is. I will turn to Him forever. I trust our LORD.