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...
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| 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.
Monday, October 3, 2011
the iPad...
 We had David's iPad etched (for FREE) ...   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 |
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| 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.
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| Someone loves his new iPad |
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.
Tuesday, June 7, 2011
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.
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.
Sunday, May 1, 2011
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.
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 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!
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!
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...
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| 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.
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| 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 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!
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| I told the name of the tulip once, and he remembered it the rest of the day. |
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| 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.
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| 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.
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| 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.
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| Yeah Spring! |
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