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.

May 2010- August 2010 ( a very busy summer)

5/13/2010 We hosted a pastor from India in early May. We were trying to figure out the best way to “introduce” him to David. I printed a picture of the pastor off his website and laminated it about 4 days prior to him coming. We told David his name and that he would be staying with us for a few days. When the pastor arrived, the boys were both napping, he himself turned in to rest. When the boys got up, we worked on preparing dinner and then our guest came downstairs. David, without missing a beat, said his name and welcomed the pastor with his silliness. Our guest felt right at home, as he missed his grandbabies. He enjoyed his stay with us, we hope to host him again.

5/16/2010 To wrap up our guest pastor’s stay, the church had a huge BBQ in the church parking lot, complete with a bouncy house for the kids! The food was great and both our boys enjoyed the bouncy house. David would sit in the bouncy house and enjoy the colors and watch the other kids. Gregory (our youngest) got right in and jumped around.

David checking in to see that Momma was outside. "Hi Momma, I'm bouncing."

Gregory is in the front of the "pack" of bouncers. David is enjoying the colors, not the kids.

On Father’s Day this year, I coordinated with my two brothers and sister to surprise our Dad at his place. Everybody pitched in and did part of the meal. It was a bit rough for me because David kept getting in to things, he is just so curious in new places, but what boy isn’t? All in all it was a success, and we all slept well for naptime upon getting home.

We also had a surprise visit from my Great Uncle from Utah. He got to meet the boys and catch up with us for a bit. We let him know of David’s diagnosis and what we were doing to try to recover him. He is am amazing gentleman. He has endured a lot of loss in our family over the last 10-15 years. He is currently celebrating 97 years of life, and a wonderfully full one at that. He has always been like the Grandpa I never had, since my only one passed when I was too young to remember. He is gracious and generous and full of life.

The end of June brought us to David’s 4^th birthday. We had gorgeous weather and took the boys to Mukilteo to enjoy the water and maybe try and fly a kite. We enjoyed a picnic, then visited Nana before heading to the water park for a little play time. The boys were exhausted when we got home, what a full day! We celebrated that evening with Betty Crocker GF Brownies and Ben & Jerry’s Berried Treasure Sorbet…yum!

The wind is not cooperating with us...both the boys loved chasing the tail.

Watching the train go by on the edge of the beach- while enjoying apples, pretzels and a juice box.

That's not our ball...where did you get that?

That is the most sugar my boy has had in one sitting!

7/4/2010- David loves fireworks! Daddy took David up the hill from our home to watch over the town as fireworks went off everywhere. They were out until 10:30pm and David slept like a log that night- he was so happy when he got home, but so exhausted.

It's a bit blurry- but you get the idea...the whole skyline lights up.

7/13/2010 Follow-up on David's regimen with the Dr. We ran blood tests again a few weeks before and went to discuss what we found. It was decided we would add to his current regimen by supplementing with:

Carnetine because of the lack of protein in David's diet- he won't eat meat, except bacon (we buy uncured from Trader Joe's so there are no nitrates/nitrites)

     ~We also decided to run a comprehensive stool analysis for David, I was concerned about yeast/bacterial issues because of some of David's behaviors (demanding, noncompliant, hands over ears, stimming (rocking), climbing, standing on head, giddy behavior, funny smelling scalp, itching, smelly stool, and constipation vs. diarrhea) We also discussed running a NutrEval in about 3 months to see where we were in our care for David.

Someone enjoys snuggling in fresh, warm towels from the dryer.

7/14/2010- Had friends over for dinner, they have 2 boys about the same age as ours… we ate outside and the boys enjoyed playing on the swing set and the double hammock. David did really well socially with them, he’s growing and changing so fast- we are excited to see those benchmarks emerging in his social life.

7/18/2010- This was a very special day. Grandma & Grandpa took all of us on the steam train! We weren’t sure how David would do with the larger crowd and the loud noise of the train. We showed him pictures up to a week before going to prepare him. We also made a “trip book” with pictures of landmarks we would go by on the way down to Grandma & Grandpa’s. Both the boy’s thought that was pretty fun, until we had to deviate from our planned route due to traffic issues. The trip down to Grandma & Grandpa’s is about the maximum amount of time our boys will sit in the van. They start to get fussy and squirmy and downright grouchy. I have learned to pack lots of food, snacks and drinks along with books and things with buttons (calculators, old cell phones and remotes) to entertain them there and back. David did really well on the full 1 ½ hour ride. Cautious at first, he nestled in between Daddy and Grandma. He stayed there until about 10 minutes into the ride, then he stood up to watch where we were going, all the while keeping his ears plugged.

Waiting for the train…  

Checking out the engine…

Very happy but it's very loud.

David’s Motorcycle (he hasn’t told Grandpa yet)

7/29/2010- Results from David’s stool evaluation came in. Things looked normal. I appreciated the full color report from Genova Diagnostics and the explanations of what the heck they sent to me about digestion, absorption, metabolic markers & microbiology. Lots of big words were used, but they do tell you what everything means and how it plays a part in the body. Yeast showed as a possible pathogen, but not in a range to be concerned with (at this time). It was nice to count something out on the journey thus far. We keep the report as a reference, who’s to say, things could change.