Thursday, July 3, 2014

Bike Detectives

Granddad & Meemaw arrived in Salem today, at 1:30 in the morning. We didn't see them until much later of course. Sounds like there were flight delays & other problems.. that I'm sure they want to forget about. But they made it! The kids have been playing with them for hours. The kids had dinner outside on the picnic table tonight. Then they played for quite a while. Granddad did a lot of chasing!!

Granddad & Meemaw met T (the woman who helps us). T was excited to talk to Susan about her special ed experience.

Judah had a dermatology appointment. His rash has cleared up & we only have to use the skin rash cream once a day now (not twice).

Just so I don't forget - yesterday Judah had phenomenal progress - we had just started back up again on the bethanecol & docusate sodium that day.

Judah took one of his eye drops today for the first time this morning. We are supposed to do them twice a week. It basically blurs his good eye (left eye) forcing the opposite eye (right eye) to work harder. This lasts approximately 24 hours. He has strabismus in his right eye. It did seem noticeably different to me today, looking more in the correct direction rather than away. His left eye that got the eye drop was quite dialated. He was pretty quiet today. I'm sure he was seeing differently & was probably really scared. I looked up from the garden to catch him looking down at me from the yard, wearing the saddest of faces. That killed me. I ran to him & walked him inside. I think the sun was bothering him. That was his first time outside today. He was clinging to me for comfort a lot today. I got lots of Judah kisses!

While we were outside playing this morning with Meemaw & Granddad, Willow was throwing an old tennis ball at everyone - yes literally AT Meemaw, Granddad and the rest of us. T noticed that Willow used her left hand to throw the ball every time. T is convinced Willow is a leftie (like herself).

Some Judah phrases today, "Mommy catch!" - I can't remember what he threw at me. "What's that?" - many times while riding in the car looking at something out the window. "Be right back" (not completely clear) - he walked away & came back! That one was a first! Gosh, he also had a new question.. can't think of it though!!

Judah had a lot of physical play with Sebastian today - he's been loving that lately. Sebastian has too.

Scott's at Toys R Us buying a new bike for Sebastian right now (while Sebastian is asleep). That's our birthday gift to him. We had Alvin & Susan do some detective work for us this afternoon when they took Bash to Toys R Us. While in the bike department, Granddad & Meemaw secretly took mental note of the bikes Sebastian was interested in. They nonchalantly measured his height to unveil his appropriate bike size. Then Alvin texted me a photo of the winning bike - which Scott is buying right now. Next mission... finding a place to hide it!!!

Here's a link to a website I just found. I'm stealing the bowling down the Storm Troopers, light saber training & maybe build a droid if I can come up with materials & supplies. Hopefully everyone can help with this stuff!!!

http://blog.hwtm.com/2013/10/star-wars-party-games-activities-legos-lightsabers-part-2/

Judah had 1 big mushy poop.

Judah meds.
  • skin rash med x 1
  • Bethanechol 25 mg 1/2 tablet 2/day 1 time
  • Vitamin D3 2000 IU one daily(morning)
  • Probiotic 1 daily in morning
  • Miralax 1-2 times day - 1 times
  • DMG 125 mg w/Folinic Acid &Methyl b-12 3 capsules in morning
  • Creon (pancrilipase
  • Oxy-Mag Powder 1/2 teaspoon 1/day 
  • DOCU 150/15ML Liq Hi-Tech 2 MLS  2 time
  • Levocarnitin 10% 1 Tablespoon 15MLS every morning
  • Molasses 1 tsp in almon milk
  • Fish Oil 

Meds not complete

Meds didn't take
  • Powder B-6 1/2 tsp (fridge mix) every 3-5 days
  • Beta TCP 1-4 daily - 
  • DOCU 150/15ML Liq Hi-Tech 2 MLS 
  • WP Minerals 1/day
  • Organic coconut butter 1-3 tsp/day  - 1 tsp
  • Bethanechol 25 mg 1/2 tablet 2/day
Meds we don't have
  • Sleep factor
  • his b-12/folinic shot
  • Iron up 1 tsp/day
  •  

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