Thursday, June 12, 2014


We were at Gramma's for 2 hours this afternoon. Judah was chatting up a storm the minute we got there! He was showing me all of the trains & track. They have a huge, gorgeous variety of trains. He loves that & wanted to show me all of them! He named so many of them & played with the Molly train a lot. I kept hearing him say "Molly" thinking he was talking to me. He was talking to the trains & probably talking for the trains too. He even took one train home because it needed a battery - and this is where he goes for train batteries, haha. He ran up to Gramma as soon as we got there and said, "Grandma!!!" Gramma was so touched. She said that was the first time he had ever said that to her.

While at Gramma's, Willow did lots of repairing with the kid tools. Sebastian flew around on his scooter, stopping for snacks every now & then. Gramma & I had time to talk. I even had a chance to see her book, complete & lovely.. all 65 chapters of it! ;) She is currently working on another eery tale, which is more along the lines of a murder mystery I believe.

Gramma also shared with me that Sylvia had found her. Sylvia was an old pen-pal. She lived in another country while she was writing my mom. But get this, Sylvia was her pen-pal over 50 years ago!! They haven't corresponded at all since then! Somehow she found my mom. My mom has had her last name changed more than once since then & has lived in many different states, but somehow this lady still found her. Figure that one out. Sylvia is a school proctor in Florida now. And the eery part is that my mom had recently been thinking about her!

Forgot to mention that Scott took on his 3rd job yesterday! He is now doing website work for his company. He has another job doing website work for a local comic book shop.. getting paid in comic books, sigh. And then of course he has his regular 9-5 job on top of all of that.

Judah saw the dermatologist today. Apparently we weren't given a med that we should have been using for weeks. We were only given one from the pharmacy & were supposed to be given two. The one we had been using had been preventing the rash from spreading, but was not going to make it go away - that was the other med's job, the med we still don't have.

We were leaving the house, heading to the van when Judah suddenly stopped & yelled, "potty!!!" I said, "Do you need to potty?" Apparently he did because he went straight to the bathroom & sat on the toilet! His diaper was semi-wet, not full. His legs may have been wet because I noticed that his shorts were wet when he was all done. So was it that his legs could have been wet that made him scream "potty"? Or did he just need to potty? I don't know. I don't think he peed on the toilet, but maybe he peed on his shorts instead.. I don't know. Regardless, he has NEVER done this before!! We were running very late, but there was no way we were going to ignore the miracle of what had just happened! Who cares if we're late, that kid was going to go potty!!

Judah had a big, yucky poop. He came to me immediately after he was done. Typically he doesn't do this. But apparently this one was bothering him. I'm guessing he is feeling more.. from the potty story above & the poop story here. But I don't know, it was a gigantic, disgusting poop that required a shower. Maybe he would have come to get me on any given day, who knows.

Sebastian asked me again if he could play with Trent. So no progress there.

Today was Sebastian's last day of school. He wore his Harritt t-shirt & friends in his class signed it. That was a planned event - the school had emailed us about that. He brought home a CD of 32 songs - all or most of the songs he had learned this year. He wanted to play it - so we played nearly all of it, until he decided to shut it off. Willow danced & sang (Sebastian discouraged her from singing). Sebastian sang along to some of the songs & to others he just moved his lips & did the dance moves. But he was keeping a close eye on me, making sure that I was looking & listening! And I most definitely was. They also had a field day at school. Sebastian & I talked with his teacher a bit after school. We were the last ones to leave. She was emotional about saying "adios!" to all of her kids. His new teacher handed me a list of school supplies to buy for next year, already!?!

It's been obvious to me for years that Sebastian does not want to grow up. He voiced that to me many, many times when he was little. But now his body has stretched into twice the length it once was & he can no longer do many of the fun things he used to. Of course, he is doing all of the big boy stuff now, but he really enjoyed being that little boy. He's really struggling with this. It doesn't help that he has 2 younger siblings who can jump on Daddy without hurting him, while Sebastian is always getting told that he is too big for things. Obviously we need to be more mindful of this!!

My mom mentioned the growing up thing to me today & also a new one, love. He recently questioned her about why parents love one another. He has also recently started to pay attention when Scott & I kiss. He used to just laugh & say, "You're getting married!!" But he has been teasing us about it lately, telling us that we are in love & that we are married. Scott responded to this stuff right off the bat by saying, "Yes, I am very much in love with Mommy." Sebastian had nothing else to say about it that day. We'll talk to him & get some of his questions out in the open so he isn't so confused, jealous or even angered by this stuff.

Sebastian was completely out of control tonight. All of the kids had just had a big wrestle-fest with Daddy (that went on for too long, in my opinion). Sebastian did not want it to end. This is usually the case. And obviously now, this is going to progress into much worse. He wouldn't stop when he was told to stop & was just out of control, for hours. I spent most of that time putting Willow to bed. Before I put her down, I was holding her, about 2 feet away from the mantle, facing the mantle. Sebastian ran through the living room & right into me! I didn't see him coming because I was facing in the opposite direction. I got my hand up just in time to stop my head & Willow from slamming into the mantle. I couldn't even be in the same room with him after that. Scott put him immediately in time-out, which doesn't seem to fit what had just occurred at all, but what else was he going to do? Lock him in his room? Time-out is completely ineffective for him given any situation. Taking things away is ineffective. The more positive route of one-on-one time & praising doesn't seem to change anything. Massages aren't helping. We haven't tried a reward system yet. Scott is being firm but remaining civil. I'm usually pretty calm with Sebastian, redirecting him in the furthest direction possible & trying to keep him positive and not focused on going crazy. But tonight, however, I didn't feel capable of doing that for some time. At one point I brought him to the bedroom to lay with Willow & I, and he was fine. After that was over he had a hard time not being wild though.

Judah was calm during his massage while Sebastian was being loud & staying in the same room, refusing to go to bed. This is when I came & got Sebastian.

Judah progress has been awesome. I didn't keep notes today though, I'll write what I can remember.

Judah progress today:
  • We were heading outside to the van. Judah suddenly yelled, "Potty!!!" I said, "Do you need to potty?" Then he went inside & pottied! He had a semi-wet diaper and I think his legs may have been wet, not sure, but his shorts were when he walked away.
  • He talked a LOT when we arrived at Gramma's, even saying "Grandma!" and naming lots of trains, also talking to them, talking to me & repeating others.
  • He let me know right after he pooped that he needed to change his diaper. He told me, "Yuck!" 
  • He repeated a lot of lines he heard while watching a movie - one & two word phrases mostly.
  • He got himself dressed, but didn't want to get dressed. When he finally gave in he did it all on his own.
  • He helped me put his sandals on, almost acting like he just wanted to do it himself. (hint hint Molly!!)
Really nice job on the meds today - Scott made a smoothie. :)


·         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
  •  Sleep Factors                                         
            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 (1 time today)

·         WP Minerals

1 tablet daily

·          Creon (Pancrilipase)

·         Beta TCP
              1-4 daily (done once)

·         Bethanechol 25 mg

              ½ tablet twice a day

·         1 teaspoon Black Strap Molasses in almond milk
  • Methylcobalamin Injection 20 mg/ML (b12)

 .05 ML daily (every night) with folinic acid .05ml added to the shot
Administer B-12 daily for a week (May 30, 2014 is 3rd day.) Then add folinic acid .05ml to each shot.
  • 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.

·         Oxy-Mag powder
               ½ teaspoon once a day
  • IronUp  
             1 tsp daily
  • Organic coconut butter (most of 1 tsp, began to taste it in applesauce and wouldn’t eat after that)
    1-3 teaspoons daily

 Meds not fully completed: none

Meds not at all completed:

  •  Powder B-6 (n/a)
    Mix 1 teaspoon powder B-6 with 5 oz. water. Give ½ teaspoon from this mixture every 3-5 days. (gave this the day before yesterday)

  • Arctic Cod Liver Oil (Nordic Naturals)
             1 teaspoon daily

As needed:

Child enema (after more than 24 hours no bowel movement)

Suppository – We usually go straight to enema.

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