Today was nice. It was one of those family days at home where you just hang out with the kids & let them be kids. Boone got out his guitar & played for us - he's definitely a guitar playin' kinda guy. He made some pretty music. Nearly all of it was easily recognizable.
We got out a water toy that I had forgotten about. I had bought it on clearance right after summer had ended, probably over a year ago. It was a generic version of what we called a "Wet Banana" as kids.
This was ours in the 80's:
http://youtu.be/GL2hYF2a2aY
This is what my kids played on today, very similar to the Wet Banana, but this one definitely had some thought put into it. It wasn't just a piece of bright yellow plastic with a garden hose laying on top of it - a very simple idea worth a ton of money in the 80's! The kids used one today that sprayed the water evenly over the mat for you & even had a landing area! As a kid, our landing area was mud, every single time. The one we used today had been sitting behind boxes on a shelf in the garage, completely out of sight. This afternoon Sebastian asked to go through all of our water toys & make sure there weren't any we hadn't used yet, he got really lucky!!!
Scott cooked up a big fishy meal tonight. He grilled salmon, shrimp & corn on the cob - all fresh! Dad told me that I married a good cook! He always comments on Scott's cooking. It's good stuff! Scott made chicken for Willow & Bastian. Willow ate every morsel of her chicken.
Judah made a river in the dirt outside & played in it with his P-train. Within 5 minutes, P-train & Judah were both covered in mud. There was no point in ending the fun. When I decided to get him in the bath I just took all of his clothes off outside - it's a much used strategy around here. It works well, highly recommend.
After I learned what bands Boone liked I knew I had sheet music he would enjoy. I gave him a beat up, many paged copy of Stairway To Heaven & an old paperback book full of Neil Young music. Dad had given me the Neil Young book. He mailed it to me when I was living in Phoenix, after I had told him that I didn't have anything for Neil to sign when I had met him, haha. A little too late, but very cool. That was 1997.. I'm guessing Boone is the only one in the family who may use it & will enjoy it.
Judah showed me my phone - there were 2 Thomas trains on the screen. He said, "Mommy look! Two trains!" I asked him a bit later who a train was and he said, "James" (which it was). He said it in a way that was clearly a response to my question, which was awesome! He wasn't just saying the train's name because he saw the train & wanted to say the name to me, as usual.
Willow and I had some nice one-on-one time this evening. She wanted ice cream. They never get ice cream after dinner. I said, "Okay". Then we became the best of friends! haha. She acted kind of surprised about our one-on-one time. She was definitely excited. I got out 2 bowls. She grabbed one & told me, "Bastian no ice cream". She thought it was for Sebastian. I told her it was for me & she was shocked! She questioned me several times to make sure. Then she brought me over to the bar stools where she always eats ice cream with Sebastian & told me to sit in her chair. She sat beside me. After that she pushed me, step by step, to the couch where we sat together, snuggling & having tiny spots of conversation. Every once in a while a sentence flies out of her mouth so clearly! It's really neat. Mostly she says short phrases, with a word missing here & there. Sometimes I can't understand her at all & sometimes it's easy.
Sebastian was so well-behaved today. At one point he was about to scream at me for telling him to pick up his helmet two times within 4 minutes. He almost screamed, then stopped & took a second to think. Then he spoke to me what he had almost screamed, in a calm way. I QUICKLY reinforced that behavior!! "I'm sorry Sebastian. You're completely right. I should not have told you to pick up your helmet twice. I didn't even realize I had done that. I'm sorry." He looked very surprised. He didn't speak a word. He just walked outside & picked up his helmet. haha
Dad left for the hotel after dinner tonight. They leave early tomorrow & probably won't make it back to Missouri for another week! Boone went to Gramma's after dinner. He wanted to see her house, do laundry & visit. Sebastian went with him.
When Judah got into bed tonight he patted Sebastian's bed and said, "Are yooo?" as in, "Where are yoooo?" haha. I told him that Sebastian would be back soon. Judah got a massage from Mommy & Daddy tonight - he loves it when we both do it. Willow had passed out as soon as I laid down with her so Scott & I actually had some Judah time tonight!
Here's Judah spraying the car & saying, "Yeee-haw!!"
Judah did lots of repeating what he heard on my phone. I laid with him tonight & pointed to items in pictures on the phone, naming them, he repeated me. He does so well with the one-on-one.
Judah pooped twice, big poops. We used smoothies again tonight to get a lot of Judah's meds in him. That's 2 nights in a row of smoothies.
As needed:
We got out a water toy that I had forgotten about. I had bought it on clearance right after summer had ended, probably over a year ago. It was a generic version of what we called a "Wet Banana" as kids.
This was ours in the 80's:
http://youtu.be/GL2hYF2a2aY
This is what my kids played on today, very similar to the Wet Banana, but this one definitely had some thought put into it. It wasn't just a piece of bright yellow plastic with a garden hose laying on top of it - a very simple idea worth a ton of money in the 80's! The kids used one today that sprayed the water evenly over the mat for you & even had a landing area! As a kid, our landing area was mud, every single time. The one we used today had been sitting behind boxes on a shelf in the garage, completely out of sight. This afternoon Sebastian asked to go through all of our water toys & make sure there weren't any we hadn't used yet, he got really lucky!!!
Scott cooked up a big fishy meal tonight. He grilled salmon, shrimp & corn on the cob - all fresh! Dad told me that I married a good cook! He always comments on Scott's cooking. It's good stuff! Scott made chicken for Willow & Bastian. Willow ate every morsel of her chicken.
Judah made a river in the dirt outside & played in it with his P-train. Within 5 minutes, P-train & Judah were both covered in mud. There was no point in ending the fun. When I decided to get him in the bath I just took all of his clothes off outside - it's a much used strategy around here. It works well, highly recommend.
After I learned what bands Boone liked I knew I had sheet music he would enjoy. I gave him a beat up, many paged copy of Stairway To Heaven & an old paperback book full of Neil Young music. Dad had given me the Neil Young book. He mailed it to me when I was living in Phoenix, after I had told him that I didn't have anything for Neil to sign when I had met him, haha. A little too late, but very cool. That was 1997.. I'm guessing Boone is the only one in the family who may use it & will enjoy it.
Judah showed me my phone - there were 2 Thomas trains on the screen. He said, "Mommy look! Two trains!" I asked him a bit later who a train was and he said, "James" (which it was). He said it in a way that was clearly a response to my question, which was awesome! He wasn't just saying the train's name because he saw the train & wanted to say the name to me, as usual.
Willow and I had some nice one-on-one time this evening. She wanted ice cream. They never get ice cream after dinner. I said, "Okay". Then we became the best of friends! haha. She acted kind of surprised about our one-on-one time. She was definitely excited. I got out 2 bowls. She grabbed one & told me, "Bastian no ice cream". She thought it was for Sebastian. I told her it was for me & she was shocked! She questioned me several times to make sure. Then she brought me over to the bar stools where she always eats ice cream with Sebastian & told me to sit in her chair. She sat beside me. After that she pushed me, step by step, to the couch where we sat together, snuggling & having tiny spots of conversation. Every once in a while a sentence flies out of her mouth so clearly! It's really neat. Mostly she says short phrases, with a word missing here & there. Sometimes I can't understand her at all & sometimes it's easy.
Sebastian was so well-behaved today. At one point he was about to scream at me for telling him to pick up his helmet two times within 4 minutes. He almost screamed, then stopped & took a second to think. Then he spoke to me what he had almost screamed, in a calm way. I QUICKLY reinforced that behavior!! "I'm sorry Sebastian. You're completely right. I should not have told you to pick up your helmet twice. I didn't even realize I had done that. I'm sorry." He looked very surprised. He didn't speak a word. He just walked outside & picked up his helmet. haha
Dad left for the hotel after dinner tonight. They leave early tomorrow & probably won't make it back to Missouri for another week! Boone went to Gramma's after dinner. He wanted to see her house, do laundry & visit. Sebastian went with him.
When Judah got into bed tonight he patted Sebastian's bed and said, "Are yooo?" as in, "Where are yoooo?" haha. I told him that Sebastian would be back soon. Judah got a massage from Mommy & Daddy tonight - he loves it when we both do it. Willow had passed out as soon as I laid down with her so Scott & I actually had some Judah time tonight!
Here's Judah spraying the car & saying, "Yeee-haw!!"
Judah did lots of repeating what he heard on my phone. I laid with him tonight & pointed to items in pictures on the phone, naming them, he repeated me. He does so well with the one-on-one.
Judah pooped twice, big poops. We used smoothies again tonight to get a lot of Judah's meds in him. That's 2 nights in a row of smoothies.
Judah MEDS TAKEN:
·
Probiotic (currently Lichi Super Fruit, Super Probiotic)
1 caplet every morning
- Vitamin D3 2000 IU
One daily (every morning)
- Levocarnitin 10%
(L-Carnitine 1g/10mL)
1 Tablespoon (15 ML) every morning
- Methylcobalamin
Injection 20 mg/ML (b12)
.05 ML daily (every night)
Administer B-12
daily for a week (May 30, 2014 is 3rd day.) Then add
folinic acid .05ml to each shot.
- Sleep
Factors
1-2 pills nightly (took 2)
·
DMG 125 mg w/Folinic Acid & Methyl B-12 (Kirkman brand)
3
capsules
every morning
- Organic
coconut butter
1-3 teaspoons daily
·
Miralax
1-2 times a day (had
once today)
·
WP Minerals
1
tablet daily
·
IronUp
1
tsp daily
·
Clindamycin Phosphate
Lotion
(Generic for Cleocin-T)
Apply a thin amount to affected area twice daily for two weeks.
Then apply twice weekly as needed
·
Creon (Pancrilipase)
daily
·
Oxy-Mag powder½
teaspoon once a day
·
Beta TCP
1-4 daily (done
once)
Meds not fully completed:
·
Bethanechol 25 mg
½ tablet twice a day (only did
first dose)
Meds
not at all completed:
·
1 teaspoon Black Strap Molasses in almond milk
Daily
- Arctic Cod Liver
Oil (Nordic Naturals) - arrived!
1 teaspoon daily
·
Powder B-6
Mix 1 teaspoon powder B-6 with 5 oz. water. Give ½ teaspoon from this mixture every 3-5 days. (did 2 days ago)
Mix 1 teaspoon powder B-6 with 5 oz. water. Give ½ teaspoon from this mixture every 3-5 days. (did 2 days ago)
As needed:
Child enema (after more than 24 hours
no bowel movement)
Suppository – We usually go straight to
enema.
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