Tuesday, June 10, 2014

I Always Want To Keep My Kids Happy!

I just wrote last night's blog - didn't do last night due to a migraine that went through this morning. I will do the same with this one - write it up unedited just to fill in the blog for this day!

Scott took the kids to school since my migraine was still knawing away at the left side of my frontal lobe, an unquestionably STARVING migraine. Today was Judah's last day. When I picked him up at school I didn't even recognize him in his gigantic Cars t-shirt with tiny holes in it (PLAY CLOTHES SCOTT!) & his red & blue plaid (school clothes) shorts. I pick out the clothes in the morning. I would train Scott on this but school is almost over. Just kidding babe! Sebastian had play clothes on as well - denim shorts with colorful stains. He had a school clothes shirt on though! 50% on each kid babe - we've got work to do.

I had to get up to watch Willow, sigh. ;) My headache was actually dying down a little after a morning cocktail of migraine medicine, extra strength Tylenol and generic ibuprofen. It fizzled out completely within a few hours. My appreciation for life grew, as it always does immediately after a migraine is smashed to pieces!

The kids played on the playground after school. Usually Tuesdays are pick-up, lunch & directly to speech therapy days. But the speech therapy assistant (which our insurance friend said is likely illegal), was off on her honeymoon. At least she gave more than 3 hours notice, unlike her wedding day when we only got a couple of hours & the news never go to me until I had packed all of the kids up in the van, driven to Keizer and was knocking on the door wondering why they had locked it.

Typically I resist the urge to let my kids all play on the playground after school for fear that Judah will have a meltdown when it is time to go. Willow & Sebastian play on the playground while we wait on Judah, but I never agree to Sebastian's request to stay longer so Judah can play. I'm not very good at having a special needs kid. Mainly because I always want to keep my kids happy! You can't do that with kids who have meltdowns or kids that have developmental delays. If you do, you end up avoiding much of the world & restrict your child's growth incredibly. Today was Judah's last day of school. I couldn't do this to him anymore. He was so thrilled when I told him, not once but twice, that we were going to the playground. He knew what I was saying - he just didn't think it could be true. He even saw Sebastian heading in the direction of the playground (the opposite direction of walking to the car).

Sebastian & Judah played a game of 'run straight into each other' at home this afternoon. Amazingly enough, neither got hurt! They were having so much fun that I couldn't bring myself to stop them - again, I always want to keep my kids happy!! They played together a lot today - Judah was engaging, wanting to play with Sebastian & even Willow! And he was doing a lot of things that Sebastian was asking him to. He was understanding so much today that I now I know the look he has when he DOESN'T quite understand things! Never thought about that before huh.

Sebastian continues to blame Willow for everything - he's now adding Judah to that, but not nearly as much as Willow. He wanted to hang the life-size cut out of himself (from graduation) on his door. If that isn't claiming his space I don't know what is! I want to hang it on MY door, so everyone knows it's MY room.. something like that came out of his mouth. I asked him how Judah was going to add his presence to the door. Sebastian had no interest in talking about that. I wonder if he is jealous of Willow because she has her own room? Likely so.

The life-size Sebastian freaked me out within minutes, when I wasn't even anywhere near it! I caught a glimpse of paper Sebastian out of the corner of my eye & thought there was a large man with a bright green shirt (and green hands) standing in front of the boy's room!! Since his cut-out is taped up a good foot higher than Sebastian's actual height it appears to be an adult at first glance. I'm sure the cut out will continue to spook me throughout the night. Life-size cut outs have always scared me. I'm just remembering that!!

Trent showed up after graduation last night. Sebastian asked if he could play with Trent (even though I had talked to him earlier, telling him he could no longer play w/Trent & Cooper because they were older & because they weren't nice to him). I didn't know how to put it gently so I copped out & said it was past his bedtime (which it totally was). Sebastian began questioning Trent about playing tomorrow. At this point I had to shut it down.. "Sebastian.." I said. Then the wind came in & blew my dress up to my face. Sebastian yelled, "Wooo hoo hooo!!" I pulled my dress down & walked inside, all dignity & ability to be a an authoritative parent suddenly gone. God. That's when I sent Scott out - he sent Trent home. Later we explained to Sebastian AGAIN that he could not play with those boys anymore. He still was not upset, so I'm wondering if it hasn't gotten through to him yet. He hasn't been the least bit upset about this every time I/we have told him. But the fact that we have to keep telling him is obviously not a good sign.. the last time I told him was a few hours ago, sigh. This is what he told me when he wanted to play with Trent today were, "Trent didn't prank me, Cooper did! Trent just picked me up and took me into the street! That's okay!" And my reply went something like, "Sebastian that is NOT okay. That is AWFUL!!!"

I worked on math with Sebastian (mailbox activity). He didn’t understand that one problem was separate from the other. He didn't understand that he needed to add up the number of objects – even though we had just done this. When we looked through his notebook, an entire year's worth of his work), I asked him why certain pictures or sentences weren't completed. He told me that he basically got distracted, talking to other people, etc. I had seen him do this during his Star of the Week day. He had plenty of time to finish a drawing & did not finish it. He was daydreaming & talking to friends sitting near him. The teacher had to direct him to the second project, he was left with only minutes to complete that one since he had taken so long on the first. The teacher had pointed to his chair and had told him to sit there (in Spanish). Her gestures and the fact that a big sign all about him was at that table made it pretty clear where he was supposed to sit. He had no idea. A couple of other kids had to show him. Things are starting to add up that make me concerned. It could be nothing but I'm not feeling that confident about it right now.

Scott took Sebastian & Willow to the store tonight. This left me some awesome Judah time! We played trains. We ate dinner together. He thought it was so funny that I was having the same dinner he was - gluten free chicken, one of his favorites. He responded to me a little when I talked to him, but I couldn't understand it. He kept wiping his mouth with his forearm so I asked him if he wanted a napkin. He didn't respond but he did look at my mouth and motioned his arm in the air as if he were telling me to wipe it. So I wiped my mouth with my arm, and he smiled like I had done exactly what I needed to! ha. He followed me around - only playing in areas where I was. He constantly wanted to be around me & wanted me to play with him, which we did! He typically will play on his own after a while. There was no sign that he had any desire to do that during all of the HOURS that it was just him & I at home.

I tried to get him to drink his Iron-up, an iron liquid that he hates taking. I've tried it, it's not bad at all. The fish oil he drinks is hard to down though, and he drinks that just fine! I gave him the iron med right after the fish oil and in the same little cup, hoping that he would just do one right after the other & think of them both in the same way. Yah, good luck with that Molly. He really wanted to play Cars on my phone. "I want Cars".. he said this over & over & over. After the fish oil I think he was expecting the phone. I told him that after the IRON he could have Cars. Man that was a fight. I wanted him to do it on his own, without me forcing it down his throat. We ended up spilling half of it (1/2 teaspoon) on ourselves (I hope that comes out!!!). I was smart enough, though, to do this in the kitchen and not on a carpeted floor like the last time! Lately we've just been sneaking this stuff into his smoothies. He spent a lot of time being upset & begging to use my phone while I consistently told him "first drink, then Cars". He hated that plan. Finally I was able to get him to take a couple tiny sips. I should have just poured it in his mouth. I continued on with my journey to get him to drink the full amount. Eventually I gave up. Later he snatched up my phone while it was on (he didn't need a pass code then) and began using it. I didn't take it away- he had earned it. Baby steps man.

Tonight (just Judah & I at home) I tried something new, since he had been understanding & following direction so easily today. He was seriously a new kid, it was bizarre & wonderful!!! I told him he needed to get pajamas on. I told him, "Potty and pajamas on!" He got up and walked to the potty. I had his pajamas ready in the bathroom. He got on the potty and I told him the next steps. He was still on my phone but I didn't want to upset him (again, I always want to keep my kids happy!!) so I didn't take it away. I showed him a clean diaper, told him that was next, made sure he saw & looked like he understood & laid it on the floor. Then I did the same with the pants & shirt.

I left the bathroom.

He got off of the toilet, sat down on the floor & put on his diaper!! He never cried out for me & he even did it while holding the damn phone. Then he did his pants!!  I was completely expecting him to leave at that point. He started looking on the counter for his shirt. I stepped in and handed it to him. Then there was knocking at the front door - then the doorbell began ringing! Low & behold, Judah got his head into his shirt (usually always needs assistance for this) and found the hole to put his head through. He had a tad bit of difficulty & was beginning to get frustrated. I encouraged him & pulled it down a tiny bit (I always want to keep my kids happy!!!!!!). He did the rest himself, phone still in hand I think, then walked out of the bathroom to greet Daddy & his siblings as they had just returned home from the store. Holy crap!!! Did that really just happen?!? I told Scott what had just happened. He was completely surprised - almost in disbelief. It was just so unreal. But Judah was UNDERSTANDING today, with ease & more than ever. That's why I gave him the opportunity to have this big leap.. and he succeeded, without me. I had an inkling he might do much better than usual, but nothing like this! I wouldn't have bet money on him doing what he did!! Holy cow.

Willow has been completely full of giggles today. She loves to be tickled & cuddled in your face like a stuffed animal. She is really enjoying cereal with milk now. Her favorite seems to be  gluten-free  Sunrise Crunchy Maple, made by Nature’s Path Organic, awesome!!

Judah progress today is below!!

  • He wore underwear for hours, no accident.
  • I told him it was time to potty. I put my hands on his chest & back to sort of turn him around (wasn’t expecting him to comply). He went to the bathroom & did it all!
  • When it was time to leave the playground he left with no problem. I had somewhat prepared him, telling him a couple times that we were going to leave before we actually did leave.
  • At the playground he went across difficult bridge numerous times. There were big holes that his little feet fell into a couple of times, but he was able to pull them out. He went patiently & made it every time! I realized he was going across the bridge because of his sudden love for bridges. He would say, "Shake! Shake!" when he crossed it, telling me it was the 'Shake Shake Bridge' (Thomas the train).
  • After school, Judah was asking me over & over to help him with his train as I was looking at Sebastian's yearbook with him. He finally just walked away. I happened to be just finishing w/Bash so I said, “Okay now I need to help Judah with his train”.. Judah immediately turned around & came back. Then he handed me his train.
  • The boys were playing a game of running right into one another & chasing each other around very noisily for quite a while. During this I asked Judah if he wanted to put on a diaper. He stopped, looked at me and said, "No." Then he went right back to playing!
  • Judah was following me around wanting me to play trains with him. He asked me to build a bridge, held up the material they had been using to make one & said, “Mommy bridge!”
  • Anytime he requested something I would repeat his request back to him, adding a 'please' at the end. He would repeat his request again with a 'please' at the end! He did lots of repeating & imitating, as usual.
  • I said, “Judah,  your dinner’s ready.” He did nothing. “I put it on the table.” He ran to the table. Usually the word 'eat' has to be involved for him to go to the table, or 'chicken'. Otherwise he never does. Today he did!
  • He was narrating during his train play, talking for the trains. I caught very clearly a few things, one of which was, “.. what’d ya do??”

·         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 (had once 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
  • Arctic Cod Liver Oil (Nordic Naturals)
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. 
  • 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.
 Meds not fully completed:
·          IronUp  (got a couple of tiny sips in)
            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
·         Oxy-Mag powder (got in 1/8 teaspoon)
½ teaspoon once a day
Meds not at all completed:
  •  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.

As needed:
Child enema (after more than 24 hours no bowel movement)
Suppository – We usually go straight to enema.


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