I just finished giving Sebastian his massage. He requested it again tonight. He was much more calm this time around, still giggling insanely when I touched his neck or sides of his chest, but was able to be relaxed when I massaged his fingers & toes! He told me he wanted a massage because he was still feeling "laughy" and didn't feel like he would be able to go to sleep. He said the massage helped some, but his elbows still weren't calm - he asked me to massage them, which I did. Then he asked me to do pieces of the massage again, which I didn't do because the entire process is all in one direction, and goes over the whole body, not just bits & pieces. But obviously he had enjoyed it!
Judah got nearly all of his meds today! Scott came home & mixed Judah's beta (the one that melts into big red dots & tastes yucky) with Judah's raspberry yogurt. Judah ate the whole thing! He mixed his coconut butter with a baby food I think - again, Judah downed it. Scott was on a roll! I thought for sure we were going to be making smoothies again tonight. But we really didn't have the time, there were many other things that needed to get done & attention that needed to be spread to 3 very energized children.
When I was outside with Sebastian tonight, I shared with him that sometimes I wish I could just sit in the rocking chair on the porch, and just rock in silence. He decided to do just that - which I'm sure was calming for him. Although, when I came out later he had my old boot sitting on our walkway. I asked him about it and he enthusiastically told me that he was making money. He said he was telling people to drop their change in the boot! Then our neighbors walked by on the other side of the street. He told me that he had already gotten money from them - I told him not to do that!! I hope he was kidding, but I really couldn't tell!
A woman in our support group has been talking with the bounce house owners (it's here in Salem) about getting some regularly scheduled bounce time for special needs kids (even discounted prices!). The doors would be closed to the public at that time. I told Sebastian about this today. He was worried that he might be too big to join in. I told him that there was no age limit. And then he told me, "Well ____ did it & she didn't break it, so I guess it's okay." ha! (He filled in that blank with an adults name, I won't say who though!!)
Judah is still progressing well. He said a lot of things that I couldn't get - but if I repeated the sounds back he was satisfied. Maybe they are words he is hearing differently & inaccurately - Willow does the same thing. He's still pooping in his diaper - we need to work harder on that, especially since communication is becoming easier to facilitate.
Sebastian's teacher sent home a note on EACH of his wrists today. It looked like he was walking out of class in big, paper handcuffs! She staples important notes around her student's wrists for the parents to take off & read. One note was a graduation reminder & the other note was to inform Scott & I that the class is celebrating all of the summer birthdays on WEDNESDAY (today is Monday) since their birthdays aren't recognized during the school year. How sweet is that!! This was actually something that had bothered Sebastian, so I was very pleased to hear about this & had never heard of classes doing this! Great idea. Anyway, so each summer birthday kid has to bring 2 things for their small class celebration. You'd think we would get food since he can't eat it if it isn't gluten-free. But no, we got birthday hats & napkins.
I had to get the class birthday items tonight - I wasn't sure Scott would have time after work so I braved the dollar store (as his teacher had suggested) with all 3 kids in tow. Willow was in the cart, not the top, but in the actual cart. She refuses to sit in the top. Judah & Sebastian had freedom. I wanted to make this trip quick. I had taken out my id & debit card from my purse, so I didn't have to carry a purse. I had told Sebastian very seriously 100 times before we went in that he needed to be on very good behavior & that he needed to help me in the store. He did pretty well.
I picked a random aisle to head down to reach the back of the store where I could find party supplies. Wrong aisle!!! They kept the balls (on the lowest shelf??!?) in that aisle. Judah started throwing them, one after the other! Sebastian chased them all over the aisle and put them back. Willow kept screaming that she wanted to get out & play!! Judah was going fast ahead of me. We got to the party aisle. Sebastian started showing me everything he wanted to buy - mostly stuff that wouldn't work for our list. I did allow the big Spiderman napkins though - she didn't mention no themed characters. I was counting hats, trying to get up to 34 when I looked over and saw Judah sliding his arm down an entire row of champagne glasses. He cleared the shelf in 2 seconds. Don't worry, it was the dollar store, the glasses were just a huge mess & embarrassment, but they were not glass, just plastic. Sebastian tried to keep up with Judah as he started throwing napkins, again leaving big empty spaces on the shelves. I grabbed Judah & strapped him into the top of the cart. He cleared another shelf (the aisles are slim & I didn't realize that he could reach more cups). I situated the cart better and looked down to see Willow smashing all of the birthday hats! I told Sebastian to get another cart. We had one cart for our THREE items (hats, napkins & poster board to finish off the pre-party invites). The other cart was used to contain the children.
It was insane. It was like batteries had just been inserted into my children, someone had turned up their volume sky high & put them into crash/smash/dash mode. Sebastian was running & loud, but he was also very helpful. And they all had a great time, sigh.
I talked with Sebastian this evening about getting more one-on-one time with Daddy. He told me he was fine with the time they were getting & that he never got any time with me! He wants to go to Baja Fresh & then the park, with just me. Sadness!! This mother & son time will be pushed up to high priority on my list. I didn't realize not having a lot of one-on-one time with me was bothering him so much. He was really sad, on the verge of tears. I'm so thankful he told me though!!
I read off a list of foods to Willow that she could possibly have for dinner tonight. She said, "no" to each and every one. Then I asked her what she would like to have. She said, "I want another cookie. I want popcorn!!" She's the popcorn queen!!! She could eat it all day long!
Judah was in underwear about half the day. He went to the bathroom & pulled his pants down - I didn't realize he had peed his pants. He looked at me & said, "Yuck!" That was the only accident. His rash is looking better but is still itchy. I can't remember his speech progress today - but it was there. A lot of imitating phrases he heard & also following instructions & understanding more.
Sebastian & I read "Me and My Little Brother" today, as well as a book called, "Little Sisters Are". Today his mailbox card had to do with siblings. He did some good reading, although he was still drifting off a lot & refusing to look at the book much of the time. I read the words I didn't think he knew, but still gave him some that were challenging. I was hoping this would boost his confidence as he would know most of the words. This also allowed us to really hear the story without huge lapses in every sentence. Near the end of the first book I could see his confidence & desire to keep going. He liked both stories. Judah was behind us most of the time, being very physical, crashing into us, but also stopping to examine the pictures in the books. He was probably listening to us talk about the story. Willow was hitting us with things. She tore one of the books & basically screamed for attention through most of the reading. During the last few minutes, she finally sat down near me & peacefully sucked her thumb.
Willow devoured an entire omelet tonight! Scott was hitting it dead-on with the dinners tonight! Sebastian ate his omelet up as well - but he always does. Judah found the carton of eggs on the counter and almost got them. He is fascinated with eggs. Ironically that is his big allergy.
Scott is doing laundry - I must have been on here for a long time!! haha.
Judah had one small poop.
Judah MEDS TAKEN:
Meds not completed:
As needed:
Judah got nearly all of his meds today! Scott came home & mixed Judah's beta (the one that melts into big red dots & tastes yucky) with Judah's raspberry yogurt. Judah ate the whole thing! He mixed his coconut butter with a baby food I think - again, Judah downed it. Scott was on a roll! I thought for sure we were going to be making smoothies again tonight. But we really didn't have the time, there were many other things that needed to get done & attention that needed to be spread to 3 very energized children.
When I was outside with Sebastian tonight, I shared with him that sometimes I wish I could just sit in the rocking chair on the porch, and just rock in silence. He decided to do just that - which I'm sure was calming for him. Although, when I came out later he had my old boot sitting on our walkway. I asked him about it and he enthusiastically told me that he was making money. He said he was telling people to drop their change in the boot! Then our neighbors walked by on the other side of the street. He told me that he had already gotten money from them - I told him not to do that!! I hope he was kidding, but I really couldn't tell!
A woman in our support group has been talking with the bounce house owners (it's here in Salem) about getting some regularly scheduled bounce time for special needs kids (even discounted prices!). The doors would be closed to the public at that time. I told Sebastian about this today. He was worried that he might be too big to join in. I told him that there was no age limit. And then he told me, "Well ____ did it & she didn't break it, so I guess it's okay." ha! (He filled in that blank with an adults name, I won't say who though!!)
Judah is still progressing well. He said a lot of things that I couldn't get - but if I repeated the sounds back he was satisfied. Maybe they are words he is hearing differently & inaccurately - Willow does the same thing. He's still pooping in his diaper - we need to work harder on that, especially since communication is becoming easier to facilitate.
Sebastian's teacher sent home a note on EACH of his wrists today. It looked like he was walking out of class in big, paper handcuffs! She staples important notes around her student's wrists for the parents to take off & read. One note was a graduation reminder & the other note was to inform Scott & I that the class is celebrating all of the summer birthdays on WEDNESDAY (today is Monday) since their birthdays aren't recognized during the school year. How sweet is that!! This was actually something that had bothered Sebastian, so I was very pleased to hear about this & had never heard of classes doing this! Great idea. Anyway, so each summer birthday kid has to bring 2 things for their small class celebration. You'd think we would get food since he can't eat it if it isn't gluten-free. But no, we got birthday hats & napkins.
I had to get the class birthday items tonight - I wasn't sure Scott would have time after work so I braved the dollar store (as his teacher had suggested) with all 3 kids in tow. Willow was in the cart, not the top, but in the actual cart. She refuses to sit in the top. Judah & Sebastian had freedom. I wanted to make this trip quick. I had taken out my id & debit card from my purse, so I didn't have to carry a purse. I had told Sebastian very seriously 100 times before we went in that he needed to be on very good behavior & that he needed to help me in the store. He did pretty well.
I picked a random aisle to head down to reach the back of the store where I could find party supplies. Wrong aisle!!! They kept the balls (on the lowest shelf??!?) in that aisle. Judah started throwing them, one after the other! Sebastian chased them all over the aisle and put them back. Willow kept screaming that she wanted to get out & play!! Judah was going fast ahead of me. We got to the party aisle. Sebastian started showing me everything he wanted to buy - mostly stuff that wouldn't work for our list. I did allow the big Spiderman napkins though - she didn't mention no themed characters. I was counting hats, trying to get up to 34 when I looked over and saw Judah sliding his arm down an entire row of champagne glasses. He cleared the shelf in 2 seconds. Don't worry, it was the dollar store, the glasses were just a huge mess & embarrassment, but they were not glass, just plastic. Sebastian tried to keep up with Judah as he started throwing napkins, again leaving big empty spaces on the shelves. I grabbed Judah & strapped him into the top of the cart. He cleared another shelf (the aisles are slim & I didn't realize that he could reach more cups). I situated the cart better and looked down to see Willow smashing all of the birthday hats! I told Sebastian to get another cart. We had one cart for our THREE items (hats, napkins & poster board to finish off the pre-party invites). The other cart was used to contain the children.
It was insane. It was like batteries had just been inserted into my children, someone had turned up their volume sky high & put them into crash/smash/dash mode. Sebastian was running & loud, but he was also very helpful. And they all had a great time, sigh.
I talked with Sebastian this evening about getting more one-on-one time with Daddy. He told me he was fine with the time they were getting & that he never got any time with me! He wants to go to Baja Fresh & then the park, with just me. Sadness!! This mother & son time will be pushed up to high priority on my list. I didn't realize not having a lot of one-on-one time with me was bothering him so much. He was really sad, on the verge of tears. I'm so thankful he told me though!!
I read off a list of foods to Willow that she could possibly have for dinner tonight. She said, "no" to each and every one. Then I asked her what she would like to have. She said, "I want another cookie. I want popcorn!!" She's the popcorn queen!!! She could eat it all day long!
Judah was in underwear about half the day. He went to the bathroom & pulled his pants down - I didn't realize he had peed his pants. He looked at me & said, "Yuck!" That was the only accident. His rash is looking better but is still itchy. I can't remember his speech progress today - but it was there. A lot of imitating phrases he heard & also following instructions & understanding more.
Sebastian & I read "Me and My Little Brother" today, as well as a book called, "Little Sisters Are". Today his mailbox card had to do with siblings. He did some good reading, although he was still drifting off a lot & refusing to look at the book much of the time. I read the words I didn't think he knew, but still gave him some that were challenging. I was hoping this would boost his confidence as he would know most of the words. This also allowed us to really hear the story without huge lapses in every sentence. Near the end of the first book I could see his confidence & desire to keep going. He liked both stories. Judah was behind us most of the time, being very physical, crashing into us, but also stopping to examine the pictures in the books. He was probably listening to us talk about the story. Willow was hitting us with things. She tore one of the books & basically screamed for attention through most of the reading. During the last few minutes, she finally sat down near me & peacefully sucked her thumb.
Willow devoured an entire omelet tonight! Scott was hitting it dead-on with the dinners tonight! Sebastian ate his omelet up as well - but he always does. Judah found the carton of eggs on the counter and almost got them. He is fascinated with eggs. Ironically that is his big allergy.
Scott is doing laundry - I must have been on here for a long time!! haha.
Judah had one small poop.
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)
- Beta TCP
1-4 daily (for constipation)
- Organic coconut butter
1-3 teaspoons daily
- Creon (Pancrilipase)
daily
- WP Minerals
- Bethanechol 25 mg
½ tablet twice a day
- Powder B-6
Mix 1 teaspoon powder B-6 with 5 oz. water. Give ½ teaspoon from this mixture every 3-5 days. (Scott unaware it was in fridge)
- 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.
1-2 pills nightly (took 2)
- DMG 125 mg w/Folinic Acid & Methyl B-12 (Kirkman brand)
3 capsules every morning
- Miralax
1-2 times a day (had once today)
- 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.
Didn't complete all doses: (none)
-
Oxy-Mag powder
½ teaspoon once a day - he didn't drink all of it, put in his milk
-
DOCU 150/15ML Liq Hi-Tech (generic for Docusate Sod 100MG/10ML)
2 ML by mouth twice a day - missed one dose
- 1 teaspoon Black Strap Molasses in almond milk
Daily
- Arctic Cod Liver Oil (Nordic Naturals)
380 EPA/510 DHA
8 Fluid Ounces/237 ml
1 teaspoon daily
- IronUp
1 teaspoon daily
Child enema (after more than 24 hours no bowel movement)
Suppository – We usually go straight to enema.
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