Saturday, May 31, 2014

Willow's First Bed!!

Willow is currently sleeping in her first toddler bed. Scott put it all together on his own! He finished it off by decorating it with a blue fitted sheet, Sebastian's old monster blanket and the hard pillow from the chair in Willow's room. Oh no, no, no. I had been saving Dora sheets for this day!! I was able to get them on before she saw Daddy's attempt at a fun looking toddler bed. ;) Actually I was able to give her a choice before I even put them on - bright yellow flower sheets or purple Dora. She chose Dora, all the way. The flower sheets may only be of use when I'm washing Dora! ;)

The kids came home from Gramma & Papa's this evening. They had all just taken baths & were already in their pj's. When they saw Willow's new bed they just climbed right in! Well, Judah flew. Willow kept telling her brothers to get out of her bed! She laid in her new bed for a while after we all left the room, snuggled up with Judah's big blue bear. Not long after that, she came wandering out of her room and said, "All done. All done with nap!" haha.

Scott took Judah to music therapy today. That's the second day in a row of driving to Portland for Scott & Judah. There was no way I was doing it today. Judah had me up half the night, using my body as a big car ramp, butting heads with me, talking to me.. I didn't think to give him my phone to him until 5am, because I was focused very much on sleeping & getting him to do the same. Apparently he slept all the way home from music therapy for the first time today.

The kids came home smiling & energized - as usual after a Saturday with Gramma & Papa. Apparently Judah was doing a lot of talking with them. Sebastian told me to watch as he gave Judah simple directions. Judah would repeat Sebastian's directions, while accomplishing them at the same time. Sebastian wanted to show me that Judah understood and what an awesome big brother he was. :) While Gramma & Papa were here this evening, Judah spent most of the time flying off of the arm of the couch, crashing onto me & Gramma.

This morning Judah went potty twice when I asked him to. He said "potty" once when I asked him. I was waiting on him to pull his diaper up when he got off of the toilet. He stood there for a minute, then he got a diaper out of the cabinet and handed it to me, saying "diaper". He wanted a clean diaper.

Gramma made a list of words that Judah said today.

Scott did Judah's massage tonight. I was still trying to get Willow to sleep. This gave Sebastian the opportunity to interrupt Judah's massage. Unfortunately he took that opportunity and ran with it. I had to get up and get him twice. Judah's massage is barely 15 minutes!! Eventually I ended up telling Sebastian to close my door & stay in the room with Willow & I until they were done. When I had walked in to get him (the 2nd time) he was on the kid microphone, sitting 3 feet away from Judah, making fun of what Scott was saying to Judah. His voice was very, very loud. He was going crazy because neither Daddy or myself had agreed to brush his teeth for him. We never brush his teeth for him. But sometimes he really wants us to. I talked with him about it and asked him to describe how he brushes his teeth. Then I told him that was exactly right. I think a lot of it is wanting to make sure he is doing it right.

I worked on organizing the garage most of the day. I was also able to get some items posted online & sold two immediately! I'll try to post the crib tonight, such a pretty crib. It makes me sad to see it go. All of the kids used that crib - it's a white Jenny Lind crib with a matching changing table. Willow was ready for a toddler bed quite a while ago. I think we were having a hard time allowing her to make that transition.. she's the last baby!!

I need to check in with Mom & Dave and see if Judah was overly active again today. He didn't have the Creon, but he has had the B-12 shot a few nights in a row (it's just been switched to daily). We are supposed to be monitoring the effects of a daily B-12 shot. Hyperactivity (yesterday) and more awareness, understanding and speech are the changes I've seen in the past few days - but I think the latter part would be happening regardless of the B-12. I'm pretty certain the massage holds the blueprint to his skyrocketing progress lately.

Judah pooped once today - small, formed. Part of it landed on the bathroom floor. Ickk!! Judah & I noticed it as we were walking out. He looked at it, pointed and said, "Chocolate egg!!" and I said, "No Judah!!! Don't touch it!!!!" He wasn't going to, I just zoomed into panic mode for some reason. Then he smiled and kept saying "chocolate egg", sigh.

I feel awful, we have really been slacking on his meds. They are new & we don't know the drill yet. This is because we haven't created the drill yet. Having Judah gone most of the day today gave us the opportunity to figure out a plan of action for his meds & foods, but that got delayed somehow. And we were only able to get in sleep meds when he got home. We'll have to start sending meds with Mom & Dave on Saturdays. There are so many that they have to be spread throughout the day to get them all in! Sorry guys!!!


  • 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 MLS) every morning

  • Oxy-Mag powder

     ½ teaspoon once a day


  • 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 (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:
Neo/Poly/Hc Otic  (Generic for Cortisporin Otic)

Instill 4 drops into affected ear 3 times daily for 7 days. (only did 2)

Bethanechol 25 mg

   ½ tablet twice a day (only done once, missed second dose)

DOCU 150/15ML Liq Hi-Tech (generic for Docusate Sod 100MG/10ML)

     2 MLS by mouth twice a day (only did one dose)


Meds not completed:

  • 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.

  •  Arctic Cod Liver Oil (Nordic Naturals)                                                    

          380 EPA/510 DHA                                                                          

          8 Fluid Ounces/237 mL                                                                               

          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. (although I did make the mix!)

  • Beta TCP

1-4 daily (for constipation)

  • 1 teaspoon Black Strap Molasses in almond milk

  •  Organic coconut butter

1-3 teaspoons daily
  • IronUp 

1 teaspoon daily  

Creon (Pancrilipase)

  • WP Minerals

       1 tablet daily

As needed:

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

Suppository – We usually go straight to enema.

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