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!!!

 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)
            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

      Daily
 
  •  Organic coconut butter

1-3 teaspoons daily
 
  • IronUp 

1 teaspoon daily  

Creon (Pancrilipase)

          daily
  • WP Minerals

       1 tablet daily


As needed:


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

Suppository – We usually go straight to enema.

Friday, May 30, 2014

The Big Eye

Judah had an appointment at the OHSU optic pediatric building today. There was a picture of a gigantic eyeball on the wall in the first room we were in. Judah stood and stared at it from about 4 inches away. He didn't seem to know what it was. I told him, "Look at the EYE Judah!" Then he went back to the framed eyeball poster & studied it, petting the thick, stretchy, bloody eye muscles with his little hand. This poster was displayed in every room we walked into there! He would point at it and say, "eye!!"every time he saw it. You'd think that picture would freak kids out. But that was probably one of the most interesting & memorable things about that place for Judah. The only time I saw him standing perfectly still today was when he was studying the eye. We aren't getting him one though.

The other very memorable portion of our optical visit was the eye drops. His pupils grew for half an hour in the lobby while he watched a very LOUD movie on their TV (Cars of course). He stood closely in front of the TV and was told many times by a woman (who worked there??) to step back. She told him it wasn't good for his eyes. I thought her behavior was pretty obsessive as many times as she did it, and kind of disrespectful to us, the parents. But then I remembered we were in a gigantic building filled with people that specialize in treating kids' eyes. I suppose that woman was to be expected. I finally just pulled up a chair for him to sit in. I put it far enough away from the TV for her to feel comfortable, because if she wasn't we were all going to hear about it.

Every room had a screen with different kid movies for the staff to choose from. Judah watched parts of Cars in every single room we were in there, it was insane. And they played it really loud every single time, as if lower volume was prohibited.

The eye drops weren't so bad though, it was quick. I think these people were much more used to this event than the eye doctor we went to months ago. At that place, he was screaming so loud that nurses were walking in offering to help! It wasn't a 10 second process like today by any means.

Judah was supremely hyper all day long. This became very noticeable to me when we arrived at OHSU. The only new supplement he had taken by that point in the day was the Creon, which I need to do more research on obviously. He never tired - and that appointment wasn't easy! There were interns & doctors 2 inches away from his face, talking loudly, flashing toys in front of him, asking him to look certain directions, name objects, stare at a light, constantly holding his head & trying to turn it. I held him on my lap. So I was there, experiencing how they were attending to him. It was so stressful! Not to mention for a kid with autism.. the world moves too fast for children with autism. The absolute last thing an autistic kid needs is for everything around him to be suddenly put into overdrive! They were asking him to perform skills that he could do, but not at that speed and not in that way and he couldn't understand what to do because of all of the completely unnecessary chaos swirling around him. One woman was so loud!!  Their means of examining him had to have been one of the worst ways possible to effectively gain information. He was upset & fighting at times. His behavior was mild compared to what was to be expected of any 4 year old experiencing that kind of treatment. I was very proud of him. Even when his eyes were dilated, he did well.

A kid came to play in the waiting area where Judah was watching Cars. This was the only kid in that area who was about his size, so he approached him, then walked back to his Chex, grabbed one and held it out to the boy.. he even touched it to the boy's lips when the boy didn't immediately take it, ha!

So apparently he has strabismus in both eyes. We've never seen strabismus in the left eye or been told that it is there. It is very slight. They said we could do the pirate patch - which doesn't work, we've tried. Then they suggested the sticky patch, which we offered to try. Nobody felt anywhere near confident that this was going to work though. He would have to wear it 1-2 hours daily. We'll try it for a few days. The eye doctor also faxed in a prescription for eye drops. This was interesting to me - he would take eye drops twice a week into the least affected eye, the "good"eye.  The eye drops cause the vision in his good eye to be blurred for hours. So this would act like the patch, only he would have no means to stop it from working, unless he just kept his eyes closed all day! Like the patch, this causes his weak eye to work harder, improving the muscles & hopefully improving the strabismus. We'll do this through the end of September and then see the doctor again. If it is not successful he will likely be getting eye surgery. She said his vision is good in both eyes. It's crazy all the ways they think of to check vision - ways that don't involve talking or even understanding what the doctor is saying at times.

Bash & Willow spent most of the day with Gramma/Papa. They played miniature golf! I'm looking forward to seeing the pictures. Willow wore a dress with tennis shoes today. She is sooo my daughter, haha. She didn't like the dress shoes we tried on with it - she never likes dress shoes, they aren't comfortable. When I put them on her she always says, "too big!" and quickly removes them.

Willow and I were getting ready to lay down on my bed tonight, so I could put her to sleep. This is our usual routine. I guess I was taking too long because she said, "Put me down. My god. My god." hahaaa!

Sebastian, Daddy, Gramma/Papa went to the Harritt school carnival this evening. Sebastian came home with candy prizes and a great story about how he had thrown bean bags at a big, red target. He dunked the principal! Scott showed me pics of this - so funny!!

When Gramma/Papa left tonight, Judah had a big meltdown. Usually I'm the one leaving when he is having this kind of a meltdown. This was the first time I had experienced the meltdown that happens when someone he loves has to go. It wasn't easy. And as he is getting so much stronger & bigger! It was definitely much more of a challenge physically. The iPad was our saving grace. I tried many things! Willow also became upset because her swing set play was abruptly ended. When I offered her a bath she became happy again.. but Judah found it terribly upsetting that she was taking a bath, he was crying & trying to put her clothes back on her while I was undressing her!

The Sebastian night time craziness is definitely boiling down. There is some here & there, but I really think it just stems from his habit of expressing that behavior. that  He laid with Willow & I tonight. I read them a Dr. Seuss story, one of Sebastian's favorites.. What Was I Scared Of? It's about a pair of pale, green  pants with nobody inside them!

We tried doing some of Judah's new meds today. One bm, small, soft.

I'm going to start posting his med list at the bottom of each page & separating what he did & did not take each day. See below. Scott was a HUGE part of getting these done today - the new med responsibility didn't scare him at all!

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)
            1 Tablespoon (15 MLS) every morning

 

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

     2 MLS by mouth twice a day

 

  • 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.

 

  • Bethanechol 25 mg

   ½ tablet twice a day

 

  • Oxy-Mag powder

     ½ teaspoon once a day

 

  • Sleep Factors                                    

      1-2 pills nightly

 

  • DMG 125 mg w/Folinic Acid & Methyl B-12 (Kirkman brand)

       3 capsules every morning
 

  • Creon (Pancrilipase)

          daily
  • WP Minerals

       1 tablet daily

  • 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)

 

 
 
 



Meds not completed:

  •  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.




  • Beta TCP

1-4 daily (for constipation)

 

  • 1 teaspoon Black Strap Molasses in almond milk

      Daily


  •  Organic coconut butter
1-3 teaspoons daily
 
  • IronUp 
1 teaspoon daily
 

As needed:

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

Suppository – We usually go straight to enema.

Thursday, May 29, 2014

What Did You Do At School Today? Today Was The First Time He's Ever Answered My Question!

As I was describing to a friend the newest Sebastian phase, I began to see, pretty easily, what the issue at hand was. The bedtime routine was the latest big change that he did not like. When Judah gets his nightly massage, Sebastian is supposed to go to bed. He doesn't like that. So I asked him what he thought about changing the nightly routine & he just lit up. I asked him what the bedtime routine would look like if it were up to him. "Well, I would watch a little TV, put on my pajamas & brush my teeth & play Legos while Judah got his massage. And maybe a late night? No, that's probably too much. Maybe a late night instead of Legos sometimes." I asked him if he wanted a massage too and he answered, "maybe, sometimes". He played Legos in his bedroom with his door shut tonight. He went in not long after Daddy got home, saying that he should go play now or he wasn't going to have time. It was almost as if he was secluding himself to avoid getting into trouble. Then he had a "late night" while Judah did his massage.

Late night = laying with Mommy in her bed before going to bed.

Scott said Sebastian went into crazy mode only for a very short period. During that time, Sebastian threw a rope at Scott. He was fine after time-out and was very sweet the rest of the night.

Today I called Judah, "Judah Belush", as I sometimes do. I don't know why I call him that, I don't mean to. It sounds ridiculous. He said, "Belush" right after I said it, which has never, ever happened before. At that point I thought, "oh sh*t!" And I quickly said, "Judah Blue! Your name is Judah Blue! Judah Blue Winter! Judah Blue Winter Files!" He looked at me like I had just spit out way too many words at once, but he was definitely listening. He also looked at me as if he were saying that all he was trying to convey to me was his dislike for being called "Judah Belush". Crazy mom.

Immediately after every school day I ask Judah what he did in class that day and if he had a good day. He has never answered. But he usually does yell, "Mommy!!!" when he sees me, and runs up to me for a hug, which is plenty for me! Today I asked him what he did in class. Then I said, "Did you paint?" and he shook his head no. Then I asked, "Did you play trains?" and he said, "trains!". Then he said a few things to describe the play. Today was the first time he has ever verbally shared with me what he did at school. EVER.


Judah drank a lot of water today! He hasn't been drinking his almond milk if I put in the Oxymag or B-6. He took a few sips of the Oxymag milk today and then grabbed water out of the fridge. I asked him if he wanted anything when we drove through McDonald's today. He didn't ask for "chips" (fries), like he usually does. This time he repeatedly said, "milk!" I told him a few times that they didn't have his milk. Every time I told him he would kick Willow, so I stopped telling him. At the last minute it occurred to me that I could order him a water (he also likes Hi-C but that one didn't occur to me until after we had left). He drank nearly the whole cup of water during the 4 minute ride home. This is EXCELLENT. We need to get him on coconut milk, the dislike for almond milk made with certain supplements could possibly work in our favor. Maybe he just needs a new drink.

Judah pottied on his own, first thing this morning. He also pottied after school (he played trains for a bit, then went to the potty). He did this both times with no cues. I was only in the bathroom to help him off of the toilet, to change his diaper & to remind him to wash hands.

At lunch he refused both baby foods, which I almost took as a sign that he didn't want baby food anymore - after all he has just turned into a new person so it wouldn't be surprising! One of the baby foods had the multivitamin in it that he just started today. It does have a smell to it, but I didn't know that it was also going to melt into his food! I had ground it into red dust before I mixed it into his food. I walked by him later and saw red dots in his baby food, beginning to grow by the second, as if measles had just taken over his lunch! He wouldn't go near that one. The other one I saved & Scott pushed it on him at dinner because it had 2 of his meds in it that didn't have a strong taste and the food looked the same as usual. He ate it.

Judah & I acted out different train crashing scenes repeatedly on the train table. He would make them up and I would join in, taking over one of his trains. He was doing a lot of problem solving with his trains. He really wanted the plastic trains to stick to Cranky's big magnet, but of course that didn't work. Then he turned one over and tried the metal rods that were holding the tiny wheels on. Pretty smart, right? The rods weren't strong enough, but they did magnetize - he was right. Sebastian was questioning how his little brother had just done that. Then I gave Judah some really strong magnets to work with - he was fascinated by those. I searched my brain for a way to magnetize his plastic trains. I ended up using paper clips & safety pins - it looked silly but it worked! He loves his new safety pin freight cars, haha! He played with those for a long time.

There was a time when Sebastian was absolutely in love with the Thomas the Train book, "Trains, Cranes & Troublesome Trucks!" He was much younger. I never thought that phase would end!!! We all had it memorized as we all read it many times to him, daily. In this story every train hauls something - jelly, milk, coal. And each one ends up crashing. Crashing is Judah's current favorite thing in the world. Once he discovered this book, he began religiously taking it to bed with him every night. He wakes up looking for it every morning. He calls it "book". The past two mornings Sebastian has read it to him before school. This morning Sebastian read it to him because Judah brought it to Sebastian and wanted him to read it. They read it over breakfast, haha.

Willow had a park play date today. Man, she is LOVING her personal play dates. Stone face, mute Willow did not appear in public today! Maybe that phase is over???  She ran to the park, giggling loudly and telling me to "Come on!! This way!!" She's been to that park maybe 2 times in her life, so that would be once a year, haha. I got to see some of the mom group, but didn't really feel like the opportunity to chat with them was there. While Willow was freely socializing & playing with other kids, I still wanted to engage in her world while we were there. I have a hard time sitting down & relaxing with other parents at places like parks, so unfortunately I hardly got to talk to most of the moms (and one dad). But I did meet a new mom who has a daughter near Willow's age that Willow really liked & had fun with! Willow engaged freely with both girls & boys. And she climbed EVERYTHING. She was going up playground equipment that Sebastian even gets nervous on! I held her through the hard parts, but she was fearless! She thought it was so exciting, even when her body was shaking she was still laughing! When she made it to the top she would say, "Willow did it!!" She took off down a slide in front of another kid and said, "I win!!!" when she made it to the bottom, haha. Like I said, she loves her "just Willow" play dates! And it is sooo much easier & less stressful with just her!

After school I felt awful that Sebastian had so many things that would be taken away today - and I had even added to that this morning when he wasn't doing what I had repeatedly told him to and even threw a ball at me. I was also in a bad mood, so giving him a consequence came more quickly than it probably should have. So we talked about that on the playground. Then I was able to give him some very surprising news - that we are going on a trip together! He talked about it the rest of the day. He just couldn't believe it. We're going to Nick's wedding in mid-July. I haven't even told the rest of the family yet!

Judah's permanent substitute teacher asked me if we could wait somewhere else for Judah at the end of his day. Today we hadn't even gone up to the building, we waited at the sidewalk below it. She said he can see us from a window. She asked me to wait across the road at Harritt by the buses (where I have to drop him now). I asked her to just bring him to the car. She told me that was fine. I said, "He can't see us over there right?" Then she told me that he sees us when we pull in!! What?! Anyway, had no idea about all of that and am not quite sure how he would see our car (maybe close the shades??!), but now we will be parking in front of Sebastian's school & walking over to the bus to get Judah. Ridiculous!!! He's just been getting worked up when he sees that we are there.

I dropped Judah at the bus this morning and he had a meltdown out of nowhere, dropping to the ground, screaming for me. I waited because I was afraid he was going to hurt himself - hit his head on the sidewalk, run into the road, etc. The sub told me to leave. I finally did when I saw that an aid was on her way over. I drove the van up the hill where I didn't think Judah could see us & watched for a while. They were making no progress. The sub told me at pick-up  that he was out there for quite a while and had an "okay" day. Okay??? He's flipped lady - he's a new boy! Even despite the meltdown she should have noticed some dramatic changes.

Judah goes to school to socialize, from time to time I have to pound that into my brain.

We saw another mom at Judah's school. She's doing the QiGong massage with her son. She said his speech is definitely improving. We were both excited to share our good news!!

Scott is trying to make up a checklist for Judah's meds. They just about tripled after that Dan dr. visit yesterday. I spent hours typing up notes from that visit last night, and making some visuals to help us administer them. Nebulizer, shot, mixing, 1/64th a teaspoon??, refrigerate, don't refrigerate, cut in half, if he won't take this try this.. it's crazy making!

Scott's worried about getting all of these supplements into him in one day. We came up with ideas on how to write up something that could help us. He's working on that now.

Dr. Green thinks that we need to try a lot of different supplements since Judah is progressing so much - he doesn't want to miss something that could push him even further.

Appointments, new meds, graduation, carnival, insurance changes, travel, new behaviors.. and on & on. I'm sinking fast.. but I know we'll make it, somehow.

Today Judah had one small, formed poop.
 
Judah had - probiotic, vitamin D, L-Carnitine, 1 docusate Sod (missed one dose), 1/2 Bethanechol twice, 2 Sleep Factors, 3 DMG 125 w/Folinic Acid & Methyl B-12, no b-6, 1 Beta TCP, no OxyMag (would not drink), no WP Minerals (would not take in baby food), no organic coconut butter (will start tomorrow), no Creon (will start tomorrow), no Miralax, no molasses in almond milk (will try tomorrow), no Iron-up (will start tomorrow), no fish oil (we're out). We will do B-12 shot tonight.


 

Wednesday, May 28, 2014

MESS of a blog entry. I will fix it later - feel free to come back & read later if you want.

This entry is a disastrous MESS that I will clean up later. So either ignore it or take from it what you can - there's a lot of amazing Judah progress here. Today was the best day he's ever had, he was able to show us himself as a whole child. It was the most amazing, surreal day I've ever experienced in my life. If I'm dreaming please don't wake me.


I try hard to steer away from cursing in my blog.. because I'm betting I have less than 5 readers & I don't want to risk losing any!! haha. And plus, I'm writing this for my kids.. they won't want to think of Mommy as someone who could cuss like a sailor.
But, Holy Shit!! Judah, my god, it's unreal. I know I talk about his progress in every other paragraph of my blog.. and it could have become nothing earth-shattering to anyone at this point, more along the lines of a bumpy road uphill? But this, earth shattering for sure. I've never seen someone change like this in such a short amount of time. And he's completely cool about it! As if this had been going on for him this entire time, which it likely was. But now it's going on for US in a way that we can understand, see & hear it! So for us it's brand new & exciting.. and oh my god, Judah.

Judah was eager to go home after the doctor appointment. He told me "go, car, let's go, come on", etc. Then he sat down by the front door and yells to me (i'm around the corner), "I'm waiting!" hahahaaa. Most moms would be annoyed by that, ironically that was one of the best parts of my day. He got the train tracks all ready when we were told it was our turn to go see the doctor. When it turned out to just be a weight check he sat in the doorway of the waiting area/office area, train tracks in hand, to make sure he didn't miss our turn & that the tracks were coming too! When it was time to go at the end of his appointment, I asked him to clean up and he said, "nope!" I started cleaning up and told him that we needed to clean up. He got on the floor and helped me until it was done. He had his temperature checked in his ear without me even TOUCHING him. Maybe because he was able to respond to what we were saying appropriately (like he's doing with everything else now!), and of course he was used to doing this by now. But that has NEVER been without a physical struggle, ever. And suddenly this??

I asked him if he wanted Chex this morning.. He told me, "wait", he finishes his track and then begins to walk to the table for Chex. I say, "Judah, they are over here." He turns around before he even gets to the table & comes to me!

Today he yells at me, "Mommae!!" in a different way, telling me that he doesn't want to leave & that I should understand that, haha. Then, as I started to leave, he panics and says, "I'm coming! Wait!"

Last night in our bedroom Judah came in while I was laying down with Willow. He stood and looked at himself in the full-length mirror, sticking his tongue out & making funny faces like he usually does. Then he looked at me, turned to leave and then just screamed! Then smiled & screamed again! Then he walked out. He's definitely a lot like Sebastian & Willow. 4 years later we find that out - that's absolutely fantastic, because they are awesome kids!

I could turn around & whisper "Judah" from the front passenger seat and he would look at me. Every time he was done with a bowl during the road trip, he would say "Mommy" and hand it to me. I asked him to let Sebastian help him with Cranky (his toy) and he handed it back to him. I had made sure not to point or give any physical gestures. Judah couldn't turn around to see Sebastian, but when Sebastian told him that he was handing it back, Judah reached back to get it.

Judah let me know that he wanted me to do the massage tonight - he got down on the mat and put my hands on him, put his feet in my lap & smiled, etc. All the time Willow is sucking her thumb and sticking her hand down my shirt, letting me know that she wants me to put her to sleep now, haha. At one point she just stuck both of her hands down my shirt! haha

The kids got ice cream with Daddy at DQ today. Willow sang about it on the way back, waving her hands in the air and smiling, "Ice cream! Ice cream.."

Rosemary came for Judah's massage today. We basically chased him around the play room. It was a new time of day, 11am not 1pm, so maybe it was just a bad time for him. We still got it done though! And it was effective! During the last movement he rolled his eyes up and around from right to left - which we had been told was a sign that the energy was circulating (what the last movement does). That was really neat.

He's in bed this morning.. I tell him it's time to potty.. he says "O-tay.." and gets out of bed. Sebastian is trying to get him to come see his train track (train track is one of Judah's favorite things to say, you say those words & you gain his attention instantly). Judah follows him, but turns & the bathroom & goes in to potty.. and he goes, completely on his own! I didn't even enter the bathroom until he had gotten off of the potty. Sebastian was standing at the bathroom doorway whispering to me what was going on, staring into the bathroom in amazement. I went in to change his diaper, which was DRY, so I really didn't even need to go into the bathroom at all. I had to remind him to wash his hands and helped him get down from the high step stool. That's all I did.

Right now I'm trying hard to do absolutely nothing for him as far as ADL's go (activities of daily living). I'm trying hard to remind Scott to do the same. We're so used to doing things - to suddenly just stop isn't easy. But it doesn't seem that hard for him to just follow through where he used to leave off. And suddenly we have the luxury of being able to tell him what to do because he is acknowledging these requests and doing them! Or verbally objecting, I'll take that too!!

He was playing on my phone while I was talking with Dr. Green this afternoon. I said, "Judah, why don't you go play with the train track?" He got up & went to play with the train track. Later he's back on my phone & Dr. Green says, "Judah did you hear that?" Judah immediately looks up & at the window (it was raining, beginning to storm) and smiles with bright eyes. I told Dr. Green, "A week ago, that would never have happened. He would never have moved his eyes from that phone, let alone looked up, smiled, made eye contact with you & looked in the direction the noise was coming from, curiously looking out the window to see what was going on."

 Dr. Green explained to me his thinking when he first meets a patient. This guy is a Dan Dr. (he's all about natural & environmental explanations for autism and he treats patients worldwide, he is known worldwide). When he first meets a patient he asks himself if this is a kid who is going to make it in the world on his own, who is going to be able to function in society. He says to do that he believes they need three things - communication, problem-solving skills and I think the other was a desire to engage with others? Then he looked at me and told me that Judah has a very good chance of being someone who is going to be able to do this. It was so hard not to cry.

And then he said that's why he suddenly wants him to try so many new things - because if there is anything that is going to push him even a bit further than we need to find it. And we need to find what doesn't work as well. So we are introducing new things (iron, digestive meds, foods) and increasing some of the old that we know do work. We are trying to get rid of the Miralax, it's nice to have someone who feels the same way I do about that stuff. It's not something that was made to be used long term. He says it is actually a little toxic. I visited with him for an hour and a half. He said Judah's ear infection has cleared & if the rash med we are currently using doesn't work to try the antifungal he has prescribed. We're also introducing a nebulizer to avoid doing suppositories of Glutathione. I asked to try this method first, which is basically him inhaling Glutathione for 2-5 minutes (daily I think).

Dr. Green visits are always overwhelming - so much information, I'd really need more like a week to accurately take all of that info in & be able to use it as effectively as possible & remember it as correctly as possible. Going in without Scott today was not what we had ever planned on doing - having two of us there is important in order to remember all of the info, get our questions out & get more info over to Dr. Green. We did have kid coverage but we couldn't get to her in time to make the appointment. Another circumstance of our own ridiculously bad planning. I wouldn't even call it planning. I would call it thinking of everything 20 seconds before it happens, giving ourselves 20 seconds to prepare. Neither Scott nor myself even realized we needed to have lunches packed for everyone before we left (at noon!). That's how ridiculous it is! I can successfully plan for myself - I did that for many years. But not for any more than that. I think both of us will be good at organizing & planning with 3 children in our lives (& living with much more responsibilities even without including the kids), by the time we are retired. I'm dead serious.

Sebastian & Willow went out to lunch with Daddy & explored Oregon City while Judah & I were at his appointment. We are such bad planners that we didn't even have time to get them back home before we left - Scott wanted to stay home & watch them since we couldn't get to my friend's house in time, but we didn't realize we couldn't get to her house in time until 3 minutes after we had left the house.. and even then we didn't have time to turn around and go back home. We made it to the appointment 6 minutes early. We are so awful at this. On top of having 3 kids, we have the world of autism surrounding us, which gives you a long list of things to do.. a list you will never see the end of. I'm completely serious. We will never see the end of that list. It's just how things happened for us, but man, of all the people in the world to have added responsibilities, haha. Scott and I are definitely not ideal candidates!!

I went to bed with a migraine after we got home, I'm just now feeling back to human. Daddy dealt with Sebastian throwing shoes at him (3rd day in a row of that). Daddy got more strict with the consequences this evening, which needed to happen, it did slow the behaviors down tonight. We've still got to get help with this though.. it doesn't feel natural, it's not the kid he is. And when it starts he pretty much sabotages himself, continuing to act up and lose privileges for the next day (which we always follow through on). It's like he can't stop. Then he obeys the rules of the consequences the next day & is very verbal about what he is not supposed to be doing.. most of the time when I'm not even asking.. and he isn't angry about any of it, he just keeps track of it. I think a kid with behaviors like that would act much differently. ?? We need to give him something else to keep track of!!


Judah got no fish oil (I forgot to buy it from Dr. Green!!). He took 1 vit d. 1/2 bethanecol twice. He had two doses of docusate sodium (we may be phasing that one out soon - dr green advice). 1 Tablesppon l-carnatine. 2 dmg w/folinic acid (bought some today and received it in the mail today too, figures). He had no Miralax. No Oxymag (that I know of) & no vitamin B-6 - wouldn't drink it. He got his cream twice, no poops, no ear drops. 

B-12 shots will be daily from now on.

Ear drops - Instill four drops 3 times a day for 7 days. Neo/poly/hc otic 1% sol falcon (generic for cortisporin otic 1% sol)

Cream - Apply thin amount twice day for 2 weeks then twice weekly as needed. Clindamycin 1% (generic for CLEOCIN-T 1%)

 

Tuesday, May 27, 2014

Sebastian Loses Tooth #4 - Judah Is A New Child!

In the midst of instigating an unwanted pillow fight with Daddy, Sebastian lost tooth #4! He said, "I can drink 2 drinks now!" as he smiled greatly, admiring his bloody, toothless grin in the mirror. Scott & I were excited, but unfortunately Sebastian had just been acting crazy. The bedtime hyperactivity phase has not been put to sleep. So it was a slightly awkward transition from "Stop yelling next to your sister! She's asleep!!" craziness to, "Oh Bastian! Honey you lost a tooth!" He wasn't even scared this time. I think he forgot to be. The tooth fairies can't screw it up this time. Last time we were having a stressful night & forgot to complete our duty. The tooth fairy showed up mid-afternoon the following day.  I told Bastian that she sleeps in a lot because her job makes her wings really tired.

Judah was completely with us today. Add to that beautiful surprise, confidence & a mellow attitude. It was like he was just with his family - with his own personality - able to respond in many ways to play his role. He showed so much happiness, especially playing with Sebastian tonight as Bash lifted him up and attempted to throw him on the couch, it never really worked but Judah thought it was hysterical. I had done this with them repeatedly beforehand and was exhausted. Judah had been the one to take me to the jumping spot. He pulled me there by my pant strings & said, "One, two, three!" (what I always say). He initiated the game. I was so busy at home today - I just couldn't keep up! Anytime I wouldn't grant Judah my phone or just could not get to what he was asking me to do, he would find Willow and hit her. I really need a helper here. I don't want that behavior back. He did that a lot today though.

Judah repeated line after line of SpongeBob while we were driving home from therapy. He repeated a lot of stuff today. Sebastian - "Me! Me! Me!" Judah repeated it exactly & perfectly. Things like that are starting to appear now.

Did I mention that Willow began to fall down the stairs at Shane's house on Sunday? She slammed into the banister, face first & was so shaken. Scared the crap out of her. Judah had been behind her & suddenly picked up his pace, trotting down the stairs right into Willow (I'm sure he didn't know what the outcome would be - we're not used to stairs!). I'm so grateful we didn't end up with stairs! The balcony stairs have never been a problem, but inside stairs would undoubtedly be an issue (and one we did not foresee at all while we were house shopping - I wanted stairs!).

We were outside of Judah's classroom waiting on him and I heard the "Mommeee!!" scream. At home that scream signifies a break in the train track that has ruined his train route, or a toy that has fallen apart or stopped working. I thought that's what was happening in the classroom. The aides thought he had seen me through the door & it had caused him to be upset. I couldn't see any of the kids from where I was standing outside. Not long after he got upset his nose started bleeding, they couldn't stop it & he was coughing up tablespoons of blood. The sub opened the door & told me what was happening. I rushed by her & into the bathroom. He was shaken & scared & still bleeding. I called Scott & told him to call the doctor and if we couldn't get in I was going to the ER. The aid working with him started to take it seriously at that point. I told her that this had never happened before. Luckily his nose did stop bleeding & he did stop coughing up blood. Scott talked with the doctor's assistant and was told he that he didn't need to come in unless it was a lot of blood that couldn't be stopped (which, at the time, it couldn't be).

Willow was so cute when we picked up Sebastian today. Sebastian walked outside through the classroom exit. His peers were all around him. Willow ran through & around them to get to him, "Bastian!!" Then she started patting him, wanting to hug him but he was too much on the go. She was just wild on the playground after that, fearless & in beautiful spirits. This morning we went to a play date. It was the same woman with her 3 little girls that were here for a playdate recently. She lives between us & Harritt, so it worked out very nicely for Willow & I. I'm pretty sure her play date had a lot to do with her giddiness & sudden passion for fun this afternoon. And it was HER play date - she had made that very clear to me this morning, haha. She didn't talk much until the end of the play date - when her personality just blew out and startled the mom. "Here, take this!" as she handed one of the twins a doll. Her ball rolled near the baby on the floor and she told the baby, "Don't do that.. no, no, no!" shaking her finger at the baby, as if the baby (too young to even crawl) were stealing her toddler size ball away. She tried to connect some with the twins. It's been slow going.. they go at a much softer pace & have some interesting characteristics that Willow can't quite figure out. And they're identical twins! This is the first time she's ever been around two people who look exactly alike & who dress exactly alike and who have an exact duplicate of every single toy they own. It's probably a pretty dramatic adjustment for Willow. I'm sure we'll see them more.

Judah's speech went really well today! I could hear him talking & imitating pretty regularly throughout his session. He checked out about 5 minutes before his session was over, laying his head on the table. He gave it his all! My travel coffee cup was filled to the brim when we arrived. Within minutes it had somehow gotten knocked over onto the floor.  90% of my coffee was suddenly cooking a good portion of their carpet (thank god it was brown). So I spent a good amount of time trying to clean that up with paper towels, water & hand soap. Of course, Sebastian announced the disaster as soon as we noticed it. He told Judah's speech therapist that we were going to need paper towels! I probably used over half a roll, sigh. I told his therapist that his progress has been SOARING this past week & that the speech therapist at school told me that he had the best day he's ever had at school last Thursday. She seemed kind of surprised. Maybe that will push her to challenge him more. They started out in the gym again today - I'm not sure who suggested that idea (I'm guessing Rachel, school speech therapist). Angie (music therapy) has told me to push for sensory/kinesthetic involvement in all areas of his therapy - because he's an action kid!! I didn't think using the gym was an option at speech therapy.. but of course everything is an option, until you find out it's not, right??

Oh! And Judah is on OHP! Whaaaa?? We got an acceptance letter the other day. We had never even applied because we weren't in the income bracket. OHP is linked to the K-Plan somehow. We are on the K-Plan through disability. And with disability you qualify for OHP. Soooo.. if our insurance won't cover something then we can divert it to our secondary insurance (OHP) to see if THEY will cover it. One more option!! Shane had informed us that we were probably on OHP (Shane's kid is for the same reason). Scott asked our case manager as soon as he heard that info. Shane always has golden information, he & his wife really do their research. Being on OHP could also give us more speech & OT places to choose from - supposedly they cover some of this therapy. Finding an opening with a therapist is a different story though.

Judah even looked older today. He was a new kid, verbally, mentally even physically! I'm still in shock. I think I'm the only one who got to fully experience this change - although I'm betting Sebastian saw it pretty clearly as well. Judah makes demands, has objections, etc. with his brother & sister now.. "No..that's mine..", etc. It's not much, but there are new ones pretty regularly. He's unfolding before our eyes.

After we picked up Judah and were walking out of his classroom, Willow repeatedly told the sub, "I played with friends! I played with friends!!" She was talking about the play date she had just been on, haha. That was the only time she talked about it all day!

Judah got no fish oil (we are afraid to use it since it was in the fridge when it went out). He took 1 vit d. 1/2 bethanecol (just got it tonight, missed 2nd dose). He had two doses of docusate sodium. 1 Tablesppon l-carnatine. No dmg w/folinic acid. He had no Miralax. No Oxymag & no vitamin B-6 - wouldn't drink it. He took his ear drops three times today & got his cream twice. He also had two big, mushy poops. 

Ear drops - Instill four drops 3 times a day for 7 days. Neo/poly/hc otic 1% sol falcon (generic for cortisporin otic 1% sol)

Cream - Apply thin amount twice day for 2 weeks then twice weekly as needed. Clindamycin 1% (generic for CLEOCIN-T 1%)

Monday, May 26, 2014

Trout Burgers, Who Knew?!?

Daddy cooked a big morning breakfast - pancakes & an egg, cheese & sausage scramble. I secretly snuck shoes on Judah & Willow as he cooked - knowing they wouldn't say a word. This would prepare them for the surprise family breakfast we were about to have outside! Now typically the weeds are overgrown around the picnic table & it's just not really comfortable to eat out there. But NOW we have a beautifully mowed backyard & an awesome new swing set for the kids to play on! So now we can eat comfortably outside pretty much anytime it isn't raining.. perhaps we can just buy a covering for the swing set & picnic table. Yesterday at the play date, Scott & I both noticed some of the clever ideas they had concocted for their play area. They had cemented in the legs of the swing set and they had a tarp covering most of the structure.. although Sebastian said one of it's poles made it impossible to swing very high. At first glance it appeared that the tarp was part of the swing set. It didn't look bad at all. They had a lot of Pinteresting ideas.. Shane was thinking about velcroing the train tracks to his son's train table. Brilliant. I've seen train tracks either nailed or glued to train tables at preschools & friend's houses, but never velcroed.. where they would stay in place and be movable at the same time! The very high shelf in the little boy's room would be impossible for a kid to get to. Many nice toys were located there - many of them were quite obviously bought to be admired, not played with. I've never seen a shelf that high in a kid's room, and it looked really cool!

Anyway, back to breakfast.. I made it to the patio door with a tray full of breakfast food when Sebastian finally caught on. The kids were so excited to eat outside! While we were eating Sebastian looked down & said, "Why am I the only one without shoes on?" hahaa! And there were no bees! Not a single one!! Perfect weather too.

Scott ran some errands today, which included selling our old DVD surround sound system (finally!!!).

Judah, phenomenal.. seemed to be on a plateau today as far as progress, but still nothing short of phenomenal. He is repeating a lot of what others say. He sometimes responds or says things that are new & completely natural to the situation. That's always so exciting! Sometimes after he does this, he will get very quiet & smile, as if he's got a secret. I think he's very proud of himself in that moment. I love it!

What is really interesting to me is how easily he plays with other kids. He played with Sebastian & Trent some today. He was very much included by both Sebastian & Trent. And at that point he's comfortable, and is able to just be himself. The other day we were waiting for our turn to go in at the doctor's office. A woman walked in pushing a baby in a stroller. A little boy about Sebastian's age was walking beside her. Judah squeaked, "hey!" and jogged over to them. He was very excited to see these total strangers.. because they had a little kid! I think most kids are like that, but Judah just exudes it! Judah approached them with a big smile. He began walking slowly in a circle around the stroller as the mom played on her phone. He was smiling & looking back, waiting for the other boy to follow. And he did! The mom didn't seem to notice, but the baby was enjoying it! At one point Judah casually walked away & came back to stand with me. To this day, I have never seen a kid act as if he did not like Judah or act badly towards him. Kids seem to be entertained by him & a bit curious too. All kids just want to play & have fun, that's what it boils down to really.

Willow did some spontaneous karate today. Every once in a while she begins chanting from out of nowhere, "We want crabby patties! We want crabby patties!" (Sponge Bob) Today she dropped something on her shirt and said, "Oh god. Oh my god. Oh my god." looking down at her shirt, hahaaa. I've heard her say this once before, it's so hilarious!

I've almost finished the shoe shelf project I'm doing for Willow's room. The hinges we bought were too small, just barely. Once we get some that fit it will be complete! I've already set it up in her room. With the hinges the whole thing can fold shut. The first person who painted it (and did only part of the job) painted the hinges, and of course then it would no longer fold. The lady who gave it to me (it was FREE!!) talked as if it would be impossible to make it fold again. ??? I went home & took it apart - and threw away the hinges!! Personally for me, before I discovered Pinterest there were probably a zillion things that I could have easily repaired, done or created that I tossed out of my life. This would have been one of them. I get kind of giddy around tools now.. isn't that weird??! I love them.

Sebastian played ALL DAY LONG with his friends, mostly Trent. When he plays with Trent he says Trent's name every 2 minutes and he talks non-stop! Trent showed up before breakfast this morning. Sebastian opened the door & explained to Trent that he couldn't play. But Sebastian had a plan. He told Trent that he had a plan.. he said he would eat breakfast and then he could play.. but he didn't know when he would be done eating.. so he told Trent the plan was for him to wait in his yard.. Sebastian said, "When you see me you will know that I am done eating & you can come over & play. That's the plan Trent. Is it a deal Trent? Deal? I'm sorry Trent, but that's the only thing we can do. We have to do the plan Trent. Is it a deal Trent??" Trent didn't speak a word through all of this. Then at the end I heard an "Uhh huhh" and Sebastian closed the door. Sebastian's group of friends grew as the day went along. I think they all had an awesome day off. Our driveway was covered in sidewalk chalk art & toys (mostly bikes, ride-ons & wagons) all day long. Trent rides his sister's purple bike. His sister sometimes shows up in no shoes, when I met her she was wearing only one sock. They are fun kids like Sebastian. When Sebastian had pajama day at school he kept his pajamas on afterwards to play with his friends in the neighborhood. I asked him if he wanted to change & he  looked at me as if he didn't understand, and then he said, "No, I'm fine." And I guarantee you not one of those kids cared. If we could all be so free!

Sebastian LOVED the trout burgers Daddy made for dinner. Willow was so disgusted.. I think she was expecting it to be peanut butter & jelly when she bit into it, haha. Sebastian cleaned her plate.

Judah got no fish oil (we are afraid to use it since it was in the fridge when it went out). He took 1 vit d. No bethanecol (it's at pharmacy). He had one dose of docusate sodium. No l-carnatine- we're out. No dmg w/folinic acid. He had no Miralax. I gave him 1/2 tsp Oxymag & 1/4 teaspoon vitamin B-6 but he wouldn't drink it. He took his ear drops three times today & got his cream twice. He also had two big, mushy poops. 

Ear drops - Instill four drops 3 times a day for 7 days. Neo/poly/hc otic 1% sol falcon (generic for cortisporin otic 1% sol)

Cream - Apply thin amount twice day for 2 weeks then twice weekly as needed. Clindamycin 1% (generic for CLEOCIN-T 1%)