This week has been a bit frustrating...we've seen more defiance in David than normal. Looking right at us as he does something he KNOWS he shouldn't do.
"Argh!" I'm so frustrated because I know this comes with the B12 trial, good and bad he will respond.
Still no word from his teachers, hopefully this next week will bring some changes or connections being made that they can report on...that is what we are praying for.
It's only been a week and days since we started, why does it seem longer?
All our testing has been done and sent in, the blood draw was successful on Wednesday (this time with Daddy's help) and now we wait for the follow-up appointment to discuss the rest of the battle plan.
So for now... :::sigh:::
Friday, November 25, 2011
Sunday, November 20, 2011
The really little things...
 |
| My wonderful boy... |
So...we have two B12 shots completed, it's really pretty simple... we are journaling anything and everything that seems new or different in David. My biggest thing to report so far is that David finally made contact with his baby sister yesterday for the first time, he's not been the least bit interested until yesterday.
He lightly touched her head numerous times yesterday evening...but I never got a picture, he was quiet about it, I notice him doing it but it was random and I couldn't get the camera on in time.
He asked the teacher her name in church today, and then repeated it...that was neat too. I like that he started the conversation with her, that's rare.
Oh, and he also went potty on his own today...completely by himself, no prompting. I guess that's a big one too.
All these little things...they will add up. Can't wait to see where we are in five weeks after the initial trial is over. Then dosage will be reviewed and adjusted if needed and we will continue for as long as we need to.
We have faith that David will be healed through this B12 therapy and we'll see him gradually transform into a new little boy.
More to come...
Thursday, November 17, 2011
Square One...
Well- I can't fool myself into thinking I can bring you totally up to speed on the last six months or so... so, we are starting at square one.
A fresh new chapter, starting now.
It's fitting too, because we have started to see a new Dr. for David's biomedical treatment and I'm excited to see the results we get.
I felt the need to start fresh with David because he is struggling in Kindergarten with noise/touch issues and it's been challenging for the teachers.
For his IEP this year, I learned about David's real struggle with his class. He is so much more distracted in his class because of the noise level- he can't focus. He is really having a hard time with fidgeting and talking during times when he should be quiet and listen. The teachers are amazing and are trying different techniques with him to see what will help (air cushions, fidget toys etc).
His occupational therapist tried putting him in her room for a few minutes alone (her office is fairly quiet) to see what he would do. Eventually he calmed down, was focused and looking around- they found it was the noise that was really distracting him. Now we are searching for headphones for him to wear in class when he's doing work...so he can focus better.
I have also ordered a swing for his room, he really loves to swing and it relaxes him. With the weather outside, I can't send him outside to swing...so we're adding a cocoon style swing to his room to allow him to decompress somewhere.
Last night we gave David his first B12 injection. This is the new treatment that was recommended by our new Dr.. We are starting over and tackling one of the basic and most important things that needs to be healed- the methylation/detoxification pathway.
I remember when I first started all my research when David was 3 years old and we were told he was developmentally delayed- I remember writing down B12 shots(?) and then we went a different route with the old Dr.. I've felt more like a robot this last few months in regards to giving David his vitamins/supplements, not really noticing any more changes in him...we'd hit a wall. I was just doing what the old Dr. had suggested and had stopped looking for ways to help him improve or grow.
Going to the new Dr. and hearing we are starting from scratch was nice, I thought I'd be a nervous wreck because of all the supplements still sitting in the cupboard that need to be used, but I'm strangely at peace with it. Probably because I know it's what is best for David.
I loved the question the new Dr. asked me..."are you seeing any noticeable changes in David in the last few months with the current treatment?" I couldn't really answer, it kind of felt like a maybe...so she said it's a "No"... she explained why she wanted to start over and why running another giant test wasn't needed... we'd just start by going for the most important and basic thing first.
I felt affirmation that my initial research was on the right track and really confirms the "trust your gut" instinct of a mother... and once the new Dr. suggested the B12 shots, it kind of rekindled that initial fire I had in me to find a way to recover my son (God willing)...
So, I'm off again, refocused and excited about this new path we are on.
We are still doing GFCF diet.
The B12 injections are a minimum of five weeks, one every three days (minimal trial period), and no other changes for him will happen during this time. We journal to see what differences we notice (good or bad). We haven't told his teachers at school, we'll wait and see what they say on their own, as the Dr. said we should be getting calls/notes about what changes they are noticing in him.
At this time, David still talks about himself in the third person mostly, we continually have to correct him with I, me, my etc.
He rocks while sitting or standing, he loves to crunch on ice and seems to be dwindling his diet to a few select items... our second item of focus will be yeast...since David's cravings seem to stem around sugars and simple carbs (another item that was on my initial research list- go figure).
We are excited to see how David does in this new trial, I know some kids have lost their diagnosis after a year or two on B12.
I was a bit apprehensive giving him a shot, but it wasn't bad at all. I prayed about it (a lot) and we had a pastor from our church come over and pray with us as well. Reminding us that God is the Great Physician and ultimately we want God's will for David.
A fresh new chapter, starting now.
It's fitting too, because we have started to see a new Dr. for David's biomedical treatment and I'm excited to see the results we get.
I felt the need to start fresh with David because he is struggling in Kindergarten with noise/touch issues and it's been challenging for the teachers.
For his IEP this year, I learned about David's real struggle with his class. He is so much more distracted in his class because of the noise level- he can't focus. He is really having a hard time with fidgeting and talking during times when he should be quiet and listen. The teachers are amazing and are trying different techniques with him to see what will help (air cushions, fidget toys etc).
His occupational therapist tried putting him in her room for a few minutes alone (her office is fairly quiet) to see what he would do. Eventually he calmed down, was focused and looking around- they found it was the noise that was really distracting him. Now we are searching for headphones for him to wear in class when he's doing work...so he can focus better.
I have also ordered a swing for his room, he really loves to swing and it relaxes him. With the weather outside, I can't send him outside to swing...so we're adding a cocoon style swing to his room to allow him to decompress somewhere.
Last night we gave David his first B12 injection. This is the new treatment that was recommended by our new Dr.. We are starting over and tackling one of the basic and most important things that needs to be healed- the methylation/detoxification pathway.
I remember when I first started all my research when David was 3 years old and we were told he was developmentally delayed- I remember writing down B12 shots(?) and then we went a different route with the old Dr.. I've felt more like a robot this last few months in regards to giving David his vitamins/supplements, not really noticing any more changes in him...we'd hit a wall. I was just doing what the old Dr. had suggested and had stopped looking for ways to help him improve or grow.
Going to the new Dr. and hearing we are starting from scratch was nice, I thought I'd be a nervous wreck because of all the supplements still sitting in the cupboard that need to be used, but I'm strangely at peace with it. Probably because I know it's what is best for David.
I loved the question the new Dr. asked me..."are you seeing any noticeable changes in David in the last few months with the current treatment?" I couldn't really answer, it kind of felt like a maybe...so she said it's a "No"... she explained why she wanted to start over and why running another giant test wasn't needed... we'd just start by going for the most important and basic thing first.
I felt affirmation that my initial research was on the right track and really confirms the "trust your gut" instinct of a mother... and once the new Dr. suggested the B12 shots, it kind of rekindled that initial fire I had in me to find a way to recover my son (God willing)...
So, I'm off again, refocused and excited about this new path we are on.
We are still doing GFCF diet.
The B12 injections are a minimum of five weeks, one every three days (minimal trial period), and no other changes for him will happen during this time. We journal to see what differences we notice (good or bad). We haven't told his teachers at school, we'll wait and see what they say on their own, as the Dr. said we should be getting calls/notes about what changes they are noticing in him.
At this time, David still talks about himself in the third person mostly, we continually have to correct him with I, me, my etc.
He rocks while sitting or standing, he loves to crunch on ice and seems to be dwindling his diet to a few select items... our second item of focus will be yeast...since David's cravings seem to stem around sugars and simple carbs (another item that was on my initial research list- go figure).
We are excited to see how David does in this new trial, I know some kids have lost their diagnosis after a year or two on B12.
I was a bit apprehensive giving him a shot, but it wasn't bad at all. I prayed about it (a lot) and we had a pastor from our church come over and pray with us as well. Reminding us that God is the Great Physician and ultimately we want God's will for David.
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