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.

Easter 2011...

We had a great Easter with family this year. We didn't have time to color eggs, but we still had a wonderful time. Grandma & Grandpa came up from Lacey, the boys were very happy to see them. Papa was picked up by Daddy on his way home from a half day at work. So, our "celebration" started after dinner and the boys got up from nap. We waited to give the boys their baskets until this time, so family could participate with us. David hasn't been napping as much, he stays in his room and rests, play quietly, which is fine...as long as Momma gets some down time! I'm the one who needs the naps lately, being 4 months pregnant. We had Grandpa Doug hide the eggs this year, the boys did great finding them.

Some were a little harder hid than others (top of the door)... or so we thought.
This was the first egg David found as he came down the stairs from nap!

I love the options for Organic and all natural candy this last few years! Yummy Earth amazes me and all the stuff I have tried tastes great! Lollipops, gummy bears & gummy worms. YUM. I also found another yummy treat this year: Justin's organic dark chocolate peanut butter cups... oh my. The boys basically went straight for the eggs and David proceeded to shove all the gummy worms in his mouth at the same time... hilarious for picture, but this caused panic in Momma.

David apparently likes gummy worms...

David also got a harmonica is his Easter basket...which he loved! He took to it right away once we showed him how to blow on it. He laughed after each note he made for about 1/2 hour!

My little music man

We enjoyed our family dinner as the boys rested upstairs, then had things cleaned up and ready for them when we went and got them up. This enabled us to focus on them and have all non-David friendly foods put away etc. The highlight of David's day was his dessert. As we had regular cheesecake with homemade lemon curd (yum), David enjoyed a popsicle he'd been obsessing over in a magazine for about a week. Daddy found the Dreyer's Acai Blueberry All- Natural Popsicles for him and we surprised him with this treat. He jumped up and down and diligently ate the entire thing himself with minimal mess!

Finale to the sugar rush = one happy boy

Easter is something special to our family, yes, we do the baskets for the boys, but we share the story of why Easter is so important to us as well. Simply put, it's about Jesus and what He came to do for us. We share the story of Easter with the boys a few weeks before Easter by reading a few bible passages and explaining how Jesus came to die for us. He died to save us and rose again to give us hope. Our faith has helped us tremendously through all our trials as a family, especially the diagnosis of David and how we handle his care. I find comfort in knowing I don't have control and even though sometimes that can be scary, I am reassured that God has David in his hands and will help us discern how to help him grow and learn. My faith brings me peace, and that comforts me. 'Nuff said...

Tulips...

I don't know why I chose a day to take my boys to see the tulips that everyone else on the planet chose as well. Traffic was icky, the weather was gorgeous and the wait in line was long. No child likes to wait in line, right? Once inside, our boys ran free. David was excited by all the color and really loved the tulips. He had a favorite he kept coming back to... "Zurel".

I told the name of the tulip once, and he remembered it the rest of the day.

I took my Dad along for the ride, I think everything was a bit much for him. Dad loves his grand boys, but he has a lot of health issues and finds it difficult to walk for too long as he is an amputee with a prosthesis. His youngest Grandson hung of his hand in line and ran away from him inside, Dad couldn't keep up. We wore him out in 15 minutes...but he is 70 years old...he did pretty good. I'm surprised he didn't conk out in the van on the way home!

They ran to everything, everywhere and left us in the dust.

We packed the entire kitchen to make sure we had all the food I needed to keep us happy on our trip. I get teased a lot because I'm a bit of a girl scout in that sense. I packed food, extra clothes and toys for entertainment...silly me.

David did well considering the amount of people that were there. I had to watch him because he would just fly in front of people taking pictures of the tulips, he was just so excited by all the colors and shapes he didn't notice anything (or anyone) else.

He would have sat here all day if we let him.

 Leaving posed to be an issue, David really didn't want to leave. It helped that his favorite flower was planted at the exit...daffodils. 

They really do make him smile... he loves daffodils!

All in all, we had a good day, got home way later than anticipated and got a late nap. It was worth it to see the boys enjoy the sunshine and fresh air and flowers.

Yeah Spring!

Tickles...

I love to tickle my boys! I don't know if I shared this...but David LOVES to be tickled. So, when he was struggling and not doing as well as his younger brother in memorizing scriptures...what did I do? I reached into my arsenal of resources and pulled out TICKLES! Wow- this works so amazing for David. Again, we know how blessed we are that David doesn't mind touch, he snuggles with us and loves to be tickled, hugged and loved on (thank you Jesus).
The trick: Introducing a new scripture is a bit difficult, David likes consistency and is not too fond of change (not too many children with autism enjoy change). So... we work on the scripture in increments (natural breaks in rhythm help best) and he gets tickles as he recites with Momma. Then, of course, he wants more. So we get a lot of practice in. After awhile, I withhold tickles until he says 2 increments on his own and so on. Tickles are his incentive and his reward. Once he knows a scripture, he only gets tickles if he says it correctly, then he is rewarded with lots of tickles and praise from Momma (or Daddy). It's pretty awesome when your child wants to say all the scriptures they know because they want more tickles...huh?

Try this sometime with your little ones...I'd love to know if it works for you!

At a loss...

Well, David has been off vitamins and supplements for almost 2 weeks, we tried this because of behavior issues at school. We've seen an improvement in overall behavior here at home, but not at school. I have a feeling he is pushing and testing boundaries because he won't be disciplined at school. This is making it so difficult for him to move forward to kindergarten, he won't do his independent work or listen to his teacher or occupational therapist.

He is basically ready to move up in school and that means more changes coming down the pike but we have to get David to somehow understand how important this learning and growing is for him.

I'm overwhelmed and I can only imagine he is too. New changes will be even more so.

We have to learn and figure this out together.

How can we communicate to David that he needs to cooperate and do his work so that he can move up in school to learn bigger and better things?

Pray for wisdom, that's what we can do. Then out of that will come action...eventually, hopefully.

Until then, I'll be still.

Changes...

It's been awhile since my last post... Morning sickness has ruled the roost for this last few months. I've taken this time to observe David. He is doing well drinking his juice and getting his vitamins...he's essentially been healthy since we started him on the new regimen at the beginning of January. One bout of green nose goblins, that cleared up with saline and humidifier usage :::phew:::

I've been getting emails from David's teacher, the class grew a bit this year and David seems to be having difficulty. I am at a loss as to what to do. David basically runs from the teacher and para-ed help all the time now. He isn't listening. He says "You're talking from your mouth" and "Run teacher, run!" this is happening anytime they interact with him and it's kind of taking it's toll. It's gotten worse this last few weeks and it wasn't behavior we were seeing at home, so I wasn't sure how to react. Well, it's starting now at home. I'm not sure, but I think he is testing boundaries- he doesn't get too far here at home. Momma and Daddy stick to their guns and it's tiring sometimes. I'm sure the teachers are trying, but they have 11 other students to attend to as well.

I'm going to take a chance and bring him to the Dr. and have her check his ears. The last time his behavior went "wonky" he had an ear infection... he wasn't fussy or anything... he had it for weeks and it wasn't clearing up.

We have David's conference this week, I don't know what to expect at this time. I was thinking he might get to move up to Kindergarten, but now I'm not so sure. Given his tendency to run and not listen to the teachers lately. Well, first things first... check the ears. Then we'll go from there.

I've noticed new behaviors emerging in David as well. He likes to shake his head a lot while focusing on something (giving him a euphoric/dizzy) feeling, then he crashes on his bed. He's lining up cars more (in rows) not just looking at the wheels (which he still does), he's just added to the attention for detail in how they are parked. His knowledge is growing tremendously, he never ceases to amaze me with what he has retained and recites at a moments notice. He's memorizing books. He loves "Ten Apples Up On Top" by Dr. Seuss. He recites it verbatim, no matter what book he is looking at.

Oh. I almost forgot! David got to have a really special day with Daddy at the beginning of this month. Troy found out that the Imagination Movers were coming to Seattle (to the SONY store) and he took David to meet them. Once they were inside the store and in line, Troy pointed to them and asked David "Who do you see?", David immediately wanted to sit down, right there in line. Boy, he was seriously star struck. All of the Movers are dad's and they were amazing. Troy explained (when it was their turn) that David had autism and the way he was acting was completely unexpected. They were gracious and friendly. Scott (left on floor with goggles) said Thanks to Troy for taking the time to bring David out. Pretty cool.  It was a fun time and here are some pics:

At the camera

What's over there?

In between getting there and meeting the Movers, they had to make a potty stop. They went to a local grocery store and David immediately gravitated toward the flowers. He loves flowers! Since he was a younger toddler, Grandma would bring over flower books (Birds & Blooms, Gardening Made Easy) and they were for me to peruse...but David loved them. He remembers the names of the flowers we tell him: Daylily, Zinia, Primrose, Daffodil (his favorite) Hyacinth...he remembers just about every one of them! He may be the next Ed Hume!

Saying "Hi" to the cyclamin and primroses.

Feeling Blessed...

Momma was able to go away successfully this weekend and came home to happy and healthy boys. Daddy still had all his hair left and the house hadn't burnt down. To top it all off our littlest man, Gregory decided he wanted to sit on the potty and has been successful two times today.

We (and I mean me) took awhile to get to a place where we would even think about trying to have another child. When we got David's diagnosis it felt like that was it, and we already had an 8 month old when we learned of David's developmental delay, it felt so hard to do and pretty overwhelming. Worrying that Gregory could possibly show signs of autism was scary...thinking back and remembering David, thinking about signs we didn't act on and looking for them to show up in Gregory. Rocking in the crib or on the couch. Little to no eye contact. Socially and emotionally quiet.

Gregory- 1 1/2 months

So far, so good. Gregory's almost three (in August) and his motor skills are above David's, he is extremely outgoing and he gets excited about the things he does and wants to show us, this is something David hasn't done. It has been nice to see such a difference in our two boys and it has also brought a sense of relief. We thank God on a daily basis for our boys. We have learned so much from David, I know our patience is much more bountiful than it was. We want to know and understand how to help them learn and grow to the best of their ability. David's teachers mentioned they wish all parents were as active in their child's education.

Brothers...

We are seeing great strides in David since we started with his all natural treatment. The gluten free, casein free diet was first and by itself, we didn't notice much change...maybe just less hyper. Once we started adding in the vitamins and supplements, things just starting happening, changing and taking shape- right before our eyes he was speaking a bit more and we were seeing more eye contact. What is so great is that the teachers and therapists knew how to bring him out of his shell even more with the visual PECS schedule and he took off again! Growing, learning and becoming even easier to work with.  I just can't wait to see the NutrEval result in about 4-5 months, so I can share our continued proof and success in natural treatment!

David is potty trained and doing really well! Gregory has caught on (because he adores David and wants to do whatever he does) and I love that. On top of that...God has blessed us once again and we are expecting another baby... we just can't wait to introduce him or her to two wonderful brothers!

February...

Here we are mid-February. Things are going well on the potty training front. David’s school sent home his back-up diapers…Woohoo! It’s exciting that we are finally over a large speed bump that was causing me stress, unbeknownst to me. I didn’t realize how much I wanted David to be potty trained until we are finally there. What a weight has been lifted…kinda.

We seem to have gained a new skill though, and it’s not a good one. Poo Painting, anyone? Oh yes, you heard me right. I know, yucky. Huh? Some dear friends at our church told our community group horror stories about their twin girls and their “artwork” and now that nightmare has become our reality. None too excited about standing guard outside David’s room “timing” his naptime diaper change. He hasn’t gone #2 for us in the potty yet, it occurs before he goes to sleep for nap in the afternoon diaper. If we don’t catch it soon enough… we get to clean the walls. :::SIGH:::

Needless to say, a lot of vigorous hand washing has been occurring. David’s hands now seem to have Eczema. Dr. said plain old Vaseline after hand washing is the best thing, and it works. We use a great kid friendly soap from Melaleuca that we just love. 

It’s smells yummy and it comes out foamy and easy to rinse. The pump is oversized for little hands.

Still no luck trying new foods for David, it’s hard when you see him getting tired of the same old same old, but you can’t seem to introduce something new.

Some encouraging things I’ve noticed lately though, since we started treating David: He’s gone from 2-3 word sentences to 5-6 or sometimes up to 8 words! He’s taken off with wanting to learn to read. Starting him on BOB books for beginning readers. He’s enjoying those. Much better eye contact in general. We’ve been able to have a bit more conversation with David too, that’s been really nice. Treating naturally takes a bit more time, but I feel good about his progress and I know his body is getting exactly what it needs to recover itself. 

Last weekend, David broke our indoor trampoline (accidentally). We've ordered the part, but he was pretty sad. 

Remembering when he could jump...

This weekend, Mommy gets to go away for some much needed relaxation time. The women of our church are going on a retreat. Daddy will be home all weekend with the boys. I've prayed for a calm household while I'm gone and that potty training continues on the right track. We'll see how it goes.

Is it January already?

So, here we are in 2011. New Years was a relaxing day, no real plans. I had a paid day off and we all stayed close to home. I continued to prep for my visit with the Dr. on the 3^rd. Making sure I had all my research printed and the email I sent a few days before as well so I could remember what I was going to talk with her about.


Follow up Dr. visit and how I do my research.

1/3/2011- I had 40 minutes of the doctor's time to figure out the next stage of David’s treatment. On my agenda were:

• Review Genova Diagnostics report together and discuss concerns. My #1 was the mercury chelation then amino acids. I brought a pile of one’s I found on the internet with Neocate being on the top of the pile- since it was made for children 
• Running another NutrEval in 5-6 months, this time with all the vitamins and supplements on board to see the difference in how we are helping his body.

At the appointment we dove right in, starting with the Excel spreadsheet I made showing David’s current regimen and checking it against what was suggested. We looked at the numbers on the report that were either too high or too low and those were our focus points. Everything recommended on the report lined up with what we were seeing…how cool is that?

David had very high DHPPA (Dihydroxyphenylpropionic Acid) (say that 10x fast) as well as high Citric Acid, Cis-Aconitic Acid, Isocitric Acid, a-Ketoglutaic Acid (AKKA) and Malic Acid…these are all Citric Acid Cycle Metabolites. This is the Krebs Cycle (fun link to show you how it works) or Citric Acid cycle used for metabolizing nutrients and storing them for later use. When I researched on my own before going to this appointment, I broke it down into bite size pieces. I went to www.ask.com and typed in “What is DHPPA?” and learned it’s tied to digestion and bacterial growth in the gut (Great Plains Laboratory- pioneer in treating autism is the first link to pop up). We have good and bad bacteria…in this case the bad bacteria (Chlostridia) are ruling my son’s gut. 

• The Question…how do we treat it naturally? 
• The Answer… Grape Seed Extract and/or Uva Ursi are both successful in treating this bacteria. I addressed this with David's doctor, which you should always do before starting any kind of regimen, and we started with 25mg and worked up to 100mg. 

I took each additional item on the report that was elevated or lacking and researched them one by one. With that info I talked to the Dr. about how we should proceed. She spent a whole hour with me and I was only slotted for 40 minutes, very gracious for a doctor!

The doctor and I also talked about the info I found about naturally removing the mercury from David’s body- she approved and thought we should give it a try. We also upped his antioxidants to help his body recover as he was in oxidative stress. This is linked to a number of serious diseases, such as: Parkinson’s and Alzheimers.

When I left I felt excited about this next step in David’s treatment. We started everything right away in his evening juice and we also had switched up his probiotic- we wanted to “round it out” a bit- so we are now trying Kids MegaFlora as it has 14 probiotic strains as opposed to just the one in Culturelle. Since the Chlostridia got out of hand we figured more strains of good bacteria along with the grape seed extract should rid his gut of that bad bacteria. We’ll confirm in about 5 more months. I’ll be sure to keep you posted.


     ~A side note about this...I use a HSA account, and normally vitamins and supplements are not covered. I checked with the HSA company and they stated if his Dr. provides a letter stating they are medically necessary, they will be covered. This is a big thing, because this stuff can add up. 

Administering supplements.

David's evening juice is packed with 13 vitamins and supplements! Luckily, he loves tart stuff like lemon and vinegar, the juice doesn’t taste bad at all, it has a nice tart kick to the aftertaste that he likes. It also tastes a little green (from the cilantro/chlorella) but David will drink my green smoothies when I make them and has no complaints, so there you go. 

• If your child doesn't like tartness, you may have to go with 1/2 doses of the anti-oxidants to cut it down a bit and just do 2 servings of juice. We serve ours in all natural fruit juice to help mask the flavors and sweeten it up a bit. We also change up the juice every once in awhile to keep it new and interesting.

The barrage of vitamins & supplements for David's evening juice.

January was a great month for us. We have David on his new regimen and he drinks his AM milk and his PM juice with no issues (thank God). The juice does give him a bit of energy though…so as soon as he is up from nap I give it to him. I stay on him until it’s gone, the farther from bedtime the better.


Adventures in potty training!

1/15/2011- This was a Saturday, I have weekends off and spend them entirely with the boys. I thought, I’m going to try potty training David again. I kept it low key, no pressure and relaxed (mostly my attitude). We were totally successful that weekend. I was so excited for David and he knew it. I gave him fruit snacks and he wore big boy pants all day…we went every hour or so, I used the microwave timer to remind me.

Week of 1/17/2011- Monday (holiday- David off from school). He went in the AM for our nanny and that was very exciting as well. He had a few accidents too. We just encouraged him to go in the potty next time. He would ask to go but it would be too late. He was totally getting the hang of it though! We lost it again though that weekend, my Godkids were over and weren’t able to keep up, so he wore a diaper most of the time.

Week of 1/24/2011- We continued our attempt at getting David on the potty 1^st thing in the AM, hopefully getting him to go before school.  If he did, he got to wear bog boy pants and we sent change of clothes in his back pack. He was always successful at home for me- we’d figured out his schedule. His back pack always had his set of clothes wrapped in a plastic bag for us…he wasn’t getting it at school just yet.

Week of 1/31/2011- David was well on his way to having a potty schedule down at home, now we just needed it to follow at school. He had his first success at school today and the teachers gave him GFCF chocolate chips as a reward, he loved that! I immediately adopted that idea at home, they are fairly cheap and when I only give him two, they last a LONG time! What a great idea and incentive, we gotta do what works…right?

More to come in …February!

November -December 2010

November 2010- David was basically off his supplements for the entire month of November. We did a partial blood draw at the end of October for the NutrEval test and they only got ½ of what they needed. I sent Troy (hubby) with David to get his blood drawn as we were assured that since our normal gal was on vacation that someone else could handle it. Well, they were wrong and we have learned our lesson. We will only see our gal who worked at Children’s to draw David. She is fast and efficient and gets it done in only one poke. We also learned the magic formula is that Momma & Daddy go, Daddy goes for moral support (for Mommy & David), praise and supplies the snacks. Momma goes to hold/pin down David as they do the draw. I’m not squeamish, I can watch and talk David through what is happening then scoop him up and rock him when he is done. Encouraging him through the ordeal and praising him for doing a good job after. Explaining that Mommy & Daddy don’t do this to hurt or scare him, but to help us understand how to help him heal. He gets showered with stickers from the clinic (we now have a sticker book for his collection- see below.) which he enjoys. He gets juice and snacks after too!

I just made this "sticker book" by cutting 8.5 x 11 sheets of colorful card stock and ran them through my laminator, punched a few holes and added rings- viola! Nothing fancy- but keeps the stickers off the windows in the van or somewhere else I don't want them.

The final part of the test (urine collection) was completed on November 24^th. Now mind you it has taken OVER one month to coordinate getting this sample! David sometimes wakes up between 4-6am, he usually falls back to sleep. I tried for over 2 weeks to “catch” him between those hours and sit him on his potty in his room with a bowl of warm water in tow. Usually, David ended up pretty perturbed and didn’t go back to sleep either. We tried standing him in the bathtub upon waking and holding a container “under” him. He really didn’t like so much either. We also tried pediatric urine collection bags…those did not work for us.

Thanksgiving 2010- Was nice and quiet this year. Just both Grandpa’s for dinner. We had a great time, the boys slept while we ate, then we all watched football. David thought it would be fun to try on our Godson’s hat that he left at our place. David won’t wear a hat normally, but for some reason, if Matthew leaves one, David will wear it.

Matthew's hat

We started supplements back up, only to have teacher at school mention his behavior got worse when we did. We called Dr. and she said to go off them again to see what we see. Nothing really conclusive to back anything up solidly. There could have been a lot of factors to the bad behavior at school. New students: David always has a hard time adjusting to new kids in the school environment. Not feeling well: the problem is we never know with David, he’s never told us he hurts whether ears, tummy or anything else.

11/26/2010- My brother came up to spend the day with us. We went and found a tree and brought it home to decorate. The boys are always fascinated with the lights. We had a fun day.

Pondering life...

Getting up close... checking out the details.

11/30/2010- There is a house not far from us that does a huge Christmas light display to music and they collect donations for our local food bank. The whole house lights up and you can tune in to a radio station to hear the music the lights are “dancing” to. We probably went 20 times this year! This was our 2^nd trip out…we brought the God-kids along for the ride. They were all so excited.

Going to see the lights....AGAIN.

December 2010- We keep it fairly low key around the holidays, easy for David to get over stimulated and upset. 

Super silly boy

Resting on the floor, I think he likes the cold laminate.

12/18/2010- Family Christmas with Troy’s family at our place. Grandma and Grandpa came up and brought presents for all the kids. We all had dinner and opened our presents… we had a lot of fun.

David is “reading” the instructions for a new toy received. 

Chillin' under the tree with his new pillow pet, looking at the lights.

Playing "robot" with (fittingly) the robot box.

12/22/2010- Finally! The report findings from Genova Diagnostics on the NutrEval came in the mail. Oh my goodness, this was a huge packet of paper to sift through. I need a degree in chemistry and nutrition! 

     ~This was the start to Phase 2 of David’s treatment.

As the boys were napping, I took the time to sort through it all. I highlighted the basics that made sense and read the details explaining what each thing meant. I learned that David was in oxidative stress, had bacterial dysbiosis, mitochondrial impairment, protein malabsorption and detoxification impairment- YIKES! It’s a major mouthful…but I started digging and researching because of course, the doctor wasn’t available until after the new year! I made an appointment right away for the first available time slot on 1/3/11, then I got to work educating myself on what all this paper meant.

Part of the paperwork received showed suggestions of vitamins and supplements that David should be on and I compared it to his current regimen. Then (being the girl scout that I am) I made an excel spreadsheet so we could clearly see where we were falling short. One thing that scared me was that David was in the “red zone” for mercury. We don’t really eat a lot of fish, David doesn’t like it- where could that have come from? You'll understand my stance, if you read my first blog. 

Anyway- all the research that I have read says that chelators don’t cross the blood brain barrier and as a mother (with an overactive brain), I’m always thinking what if it’s already “crossed over” and we can’t reach it? So, I’m in full on defensive mode now as I frantically search the internet for hope. Then, I “stumbled” (link of an obscure link of another link) upon a really encouraging article and low and behold it’s an all-natural treatment! Praise the Lord! (shouting from the rooftop).

The next thing I had to look for were amino acids for David, he was low on about 7 of them. The amino acids are important for the Krebs Cycle - it’s basically about metabolizing nutrients and storing energy for later use. If you are low on one component the whole cycle won't work properly. I went to the supplement store and sat on the floor writing down prices of allergen free amino acids- (spendy way to go about it if you ask me). David didn’t need much of the aminos and body building powders were WAY over what was needed and I didn’t feel safe giving him something like that anyway. Again, searching over numerous amino acid mixes and items on-line, I stumbled “again” upon Nutrition America  and their line of products called Neocate. This company makes foods and formulas for kids that are tube fed and have allergies. They are super nutritious and so I sent off an email inquiring about the product, just to be sure I read everything correctly. I received a very prompt email back from a nutrition analyst there with all the info I needed and also an offer to send me samples! I was so grateful for the fast response, I felt like everything was coming together quickly and my research was good, thorough and I was ready to meet with the Dr. on the 3^rd. 

I don't think the pile would be this large if we sent all the samples on the same day.

   

Christmas 2010- We all slept in until 8am…what a treat! The boys opened presents and stockings. We found a great wooden musical instrument set for the boys, we want to encourage that for them. David is very musical, he loves drums and unique beats in music. He will sit on the couch and rock to the music and “drum” while doing so.

Next blog will be about how we are doing so far in the New Year...I will also go into more detail about research I've found, books I've read, the importance of support from family and friends, the GFCF diet and more...

August 2010-November 2010

Week of  8/2 thru 8/6/2010- David and Gregory went to Camp Prov! Camp Prov is a special day camp for special needs kids and their siblings. The weather was gorgeous, the boys swam, played games, went on nature walks, checked out the petting zoo and did crafts. I was really nervous about this because it was so far away from home. I was assured that the camp counselors and volunteers were well equipped to handle the boys. David was assigned a “buddy” for the entire week- she was amazing. If David got over-stimulated, she would take him aside under a tree and sing songs or help calm him down. He asked for her for weeks after camp was over. We are thoroughly looking forward to next year!

Home from camp, got a little sun and a NEW haircut too!

8/23/2010- Our annual all church picnic out at Kayak Point. Lots of room for the boys to run and play. David almost always heads straight for the water (Puget Sound). Daddy was right there to wade in the water with him while Gregory opted to throw rocks in the water.

Daddy & David in the Puget Sound while Gregory throws pebbles.

9/2/2010- This is what happens when I don’t close the guest room door all the way. Thinking David is playing in his room, I’m noticing how quiet it is and immediately go look. This is why it was so quiet…David has decided to paint with A&D Butt Cream all over the guest room walls! (A hint: use a dry towel for clean up, no water) 

     ~A funny side note about this, my husband and his older brother (when they were toddlers) had a butt cream incident, but it involved my hubby getting slathered head to toe in the stuff while his older brother didn't get much on him.was not so bad. I just laughed when I caught David, made sure to get pictures and call her right away…letting her know I had sent her an email to remind her of old times.

A&D Butt cream...so many uses!

9/11/2010- We took the boys to “Touch A Truck” which is a fun event for kids to get up close and personal with all kinds of big rigs. From 12-1pm they have a quiet hour where the sirens and horns are not used. What a great idea for kids that would be scared or over-stimulated from all the noise. David has always been fascinated with cars, but mostly the tires, so he got to see a lot of those.  He did not want to get out of the stroller though, I think he was intimidated by the sheer size of everything. We had fun anyway- we rode the mini-train around the track, which David thoroughly enjoyed. Our last stop was to check out the fire truck before we headed home.

9/24/2010- This was during our 9^th anniversary week. Troy & I celebrate both of our birthdays and anniversary during the week and took the whole thing off to do fun family stuff. We went to Fort Casey on Whidbey Island to fly kites and run and play. We also went to see our wonderful friends and previous pastor’s family and their new home on the island. We enjoyed dinner  and they got to see the boys, they had not met Gregory yet. The boys loved the ferry ride but it was way too short for them! It was pretty chilly at Fort Casey and extremely windy and David flew a kite for the first time. It was so windy that it screamed on the kite string! It was blowing so hard the wind made a screaming sound against the kite string!

On our way to Whidbey Island

David flying a kite for the first time! It's super windy and chilly too...

Checking out dandelions...

10/12/2010- Super fun day for David! Friends in our church have a ranch and invited David and I to come meet and possibly ride the horses. They have Tennessee Walking horses and experience with special needs riding for kids- what a blessing! My girlfriend mentioned that David would more than likely make a bee-line for the John Deere tractor and she was right! David was given a ride on the tractor and he loved it. He also got to ride Dee, a beautiful and patient horse. He made it about ¼ way around the arena, then he wanted off…but he didn’t seem scared to approach the horses, he wanted to play in the sand! He proceeded to hang out on the chair in the arena and when Dee came up and sniffed him, David didn’t even flinch. He also really enjoyed sharing carrots with all the horses as a way to saythank you for letting us come and visit them. We can’t wait for spring to come, so we can go back for more visits!

Right for the John Deere... of course

David's first horse ride...he did really well!

Saying Thank you with carrots...

10/16/2010- A day at the Pumkpin Patch! This was fun and a little stressful because David didn’t want to leave. The patch we go to is wonderful and very family friendly. Tire swing in the trees, small train rides, bunnies to feed, swing sets to play on and of course the big hay ride down to the pumpkins in the main patch across the street. We’ve come for years and they have really made it a beautiful and enjoyable place. The roasted corn is AMAZING!

So excited... he's levitating!

The cow train

The bunny

David, How old are you?

10/17/2010-  Another day, another pumpkin patch. Daddy found one that had Charlie Brown cut outs- we had to go…David was so excited.

     ~This week we would have watched the classic fall Charlie Brown movies, which David enjoys.  However, there has been a negative side effect we’ve had trouble with since last summer. He picked up the word ‘stupid’ and won’t put it down. I can't believe how much that word is used in those shows! We’ve tried vinegar and/or hot sauce on the tongue and he likes it! He’s had time out and different forms of discipline, we still can’t get it to go away. Currently we are trying "good words get tickles" and we’ll see what happens.

Momma, it's Linus!

I'll just take this one home...

Guess Who!?

10/21/2010- Photo shoot with our friend Kim Loomis. What a great day, even though the fall colors weren’t cooperating. She does a great job at capturing the boys really well. David was having a rough day and you can’t even tell!

Sating "Hi" to the tree

Looking at all the trees while Daddy ties his shoe...

That look? Pure mischief.