I'm happy to report...changes!

What a great week so far, and it's only Monday.

Checking out his new drumsticks on "can drums" we made...

A new fidget toy to help him at school...

Tinkertoys! I loved these when I was younger...

Got some great feedback from a teacher/Mom at our church that David's verbalization and response to questions being asked has really improved...we are noticing that as well at home.

The methyl-folate was added starting 12/22 and things have gradually started changing. David is more verbal, and more vocal, which can be hard because things seems to upset or frustrate him a bit more. It is to be expected though, since the methyl-folate is helping the vitamin B12 do it's job! Basically, neurons are being repaired and David is getting more stimulation, which can be more overwhelming...hence the vocalization (screaming or stimming (hand flapping) and increased rocking.

So, small downside is David throws himself down and grunts/screams/vocalizes when he doesn't like something he's being asked to do... we just encourage him to use words to help him and tell us what is upsetting him and help him work through it.

It's a change that may not be desired but I will take it, because along with that are wonderful things...like the following conversation.

David:Momma will you sit and talk with me?
Me: Sure...what should we talk about?
David: Curious George.
Me: Ok, let's talk about Curious George...is he a rhinoceros?
David: No!
Me; Is he a monkey?
David: Yes (with such enthusiastic inflection)

I still need to prompt the conversation, but we could talk all day.

I look forward to more of these conversations and the balance to tip to where I won't have to prompt him to talk, but that I won't be able to shut him up =0)

My boy is also singing a lot...he's memorizing songs and sings them while he is playing. To the Moon (from Sid the Science Kid) and a song about decay are his favorites right now. I'm not a big fan of Sid the Science Kid except that there is a lot to learn (thank you PBS) and that seems to override the irritation I have with Gerald (one of Sid's friends)... and the show in general as it seems a bit pretentious.

Today, David shared that he didn't like an item he was given for snack by saying "No, I don't like those." and pointing...that's new because instead he would normally just leave it untouched on the plate!

Also, we have had quite a few weeks of independent potty success! David wants to use the potty on his own, with the door shut for privacy. I encourage this, but we have to continually check on him as he likes to lay on the floor and play. We've had to put the hand soap up out of the way- as we will come in and it is empty...all over David's hair, face and hands, not to mention the floor. David still needs help following through with pulling up undies, pants and washing his hands...but we are getting there. I recently added PECS in the bathroom for help remembering the steps for potty and one in front of the sink for hand washing... I know we'll get there.

What is wonderful, is that this potty thing just happened...basically David started in on his own and we are so grateful for that... now we just gotta get all the steps down.

Another chapter...

Above is David checking out his new swing... and using the 3rd person...

On Wednesday, I went and met with David's new Dr. to go over all the test results and get a treatment plan in order. I wasn't expecting to be there for 2 hours, but she is nothing but thorough. Getting the iGg food allergy results was tough...because at level 3 sensitivity, there sits peanut, oats, egg and pineapple. There go Momma's super healthy flour-less breakfast cookies out the window! Trying to reinvent that cookie with buckwheat groats, almond butter and applesauce is my next challenge, among other items right now.

First week's plan is working on David's deficiencies (Iron and Vitamin D), then on to week two,  we will add methylation support. By week three, we will add gut support to the bandwagon and on week four, we are fully supporting everything by topping it off with helping his absorption.

I left with many new supplements and immediately came home to create an EXCEL spreadsheet to figure out how to fit it all in during the day. Shuffling the probiotic to bedtime so I could give David digestive enzymes throughout the day with every meal instead of once a day. Making sure that I don't mix the iron with any other minerals... and so on.

The Dr. gave me a battle plan on what to add and how to add it, but I still needed to organize it all onto one sheet so I wouldn't miss anything on any given day.

I also started treating him homeopathically for cold/sinus support- he's had a cough since last week and remembering all the drops every 2-4 hours is only adding to the "Momma freak-out" level. I wandered around the house Lysol-ing all the doorknobs, light switches and remotes...

We are now over the 5 week initial trial of B12 and continuing that same duration of every 3 days, we considered moving to every other day but the Dr wanted to add a Methyl folate to David's support to see if that might be what is "holding back" the B12 from really working. It's all about getting his methylation cycle to work well on it's own. We added the B12 and saw a few small changes, but without the folate in  methyl form, the cycle isn't completed...and all items in the Methylation cycle must be supported or the whole cycle doesn't work. Praying this is the key and we'll start seeing more change after we add the methyl folate starting 12/22.

I've felt overwhelmed since Wednesday, staying up and creating that spreadsheet, learning how to reorganize everything, again. Also dealing with not just GFCF diet, but having to remove some essentials that I've leaned on for so long with David. It's all new to me again, and right before Christmas too. I know this too shall pass and I look forward to reporting some new findings in the next weeks to come.

:::raspberry:::

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:::

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...

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.

the iPad...

We had David's iPad etched (for FREE) ...

The super easy to put on screen protector!

The stylus we found for David- perfect for his size hands and easy to use!

Trying out the Spelling Bug app- recommended by his Preschool Teacher

iWrite Words app- great for handwriting skills- the stylus hadn't come yet...

It's been awhile since I've blogged, sorry.  Baby #3 on the way any day now...

We received David's iPad at the end of July. He's really enjoyed using it. We've found some great apps that he loves and also learned what he will sit and waste his time on (Angry Birds) so we removed it... we also got a stylus to help his fine motor skills/grip.

David enjoys music, we found a great piano app (Juno Baby) and David really gets a kick out of HOP on drums (from the movie). We also found a guitar app- but he doesn't seem to favor it as much.

Someone loves his new iPad

David started Kindergarten this year and seems to be doing well in his class. He enjoys his teachers and still loves to ride the school bus to and from the school.

We are due soon for another big blood draw, want to see where his baseline is after being on supplements for a little over a year.

May & June (so far)

Things feel like they are getting back to normal. We had a fun little virus go through the household with puking and what we like to call "butt-trouble". Tasteful, I know. I think we are all in the clear now. :::phew:::

David graduates to Kindergarten in September and we are excited and scared for this new adventure. We are working hard to get him an iPad by the end of the month to help him continue his education here at home for handwriting tasks, some easy spelling/memorization and early reader items. His motor skills still need improvement, so that is what we are going to work on this summer.

Daddy found a cool new swimming pool that has a great kids area and David loves to go swimming with him. He looks forward to that every time they go and he sleeps well afterward. Otherwise, David has been getting up between 5:45 - 6:30am every morning, which is a bit rough on Momma, who needs her sleep because she is almost 5 months pregnant.   :::ugh:::

Trying the boys in the same room for bedtime has been fairly successful since Memorial Day weekend but nap time just isn't working, they won't wind down and sleep. Trying to get that sorted out before the baby comes. David and Gregory have been playing and interacting well together, they laugh a lot and encourage each other...even in the not so good things (like pooh painting). Will will try for more social gatherings this summer with family to get David some more peer interaction too.

All in all, besides still working on getting him back on all his supplements & vitamins, David is doing well. The behavior issue never really changed at school, so we are getting his body back on what it needs and we'll run new tests soon to see where we stand on his allergies to gluten and casein as well as the nutrients he still needs.