Friday, February 28, 2014

The Magic of Dream Lights

Unfortunately our Internet went down this morning. Apparently we have a bad modem. Scott was supposed to telecommute today, bummer! He had to go into work. But at least it was casual Friday so he could dress comfortably! The blog will go back up when we get a new modem. When we found out we had a bad modem I asked Scott, “That isn’t something WE could have caused, is it?” Scott said, “No.” I said, “Good, because I pressed all of the buttons earlier.”  He thought that was funny, whew!

Willow & I returned from dropping Sebastian at school this morning & she said, “Hi Rita”, as I was parking the van in the garage. Hahaa! After that I made a video of her saying “hi” to Rita. I haven’t heard Gramma be called “Gramma” in a while now!

I had an uneasy feeling as I left a suspicious toddler standing in the bathroom near the door while I ran to get something. Sure enough, I came back & she had locked herself in. It took over 20 minutes before I could get her out. She didn’t cry or scream much. She definitely wasn’t sounding off a genuine - “I’m terrified, get me out of here!!!” scream. I gently instructed her numerous times to turn the lock - I knew that she knew how to do it. I’ve never been able to do the trick where you put the tip of a paperclip (or something?) into the tiny doorknob hole & magically unlock the door. Since this didn’t feel like a dire situation (any responsible parent would probably kick me in the mouth for thinking that), I figured I would try to learn the doorknob trick. I had to get my kid out, right?? But first I texted Scott, who was suddenly on his way. Rest assured, Willow does have a parent who panics. I accomplished the doorknob trick before he arrived, rescued Willow, who had gone through the Dora accessories & bath toys under the sink and was now laying on the floor, unsure how to act. I hugged her & held her & told her nicely that locking doors is dangerous . As soon as she saw her brothers she was back to her old self, talking to Sebastian, who rewarded her with a sucker from his Valentine’s Day candy bag. He said, “This is because you tried SO HARD to get out of the bathroom Willow.” Ha. I’m sure we will be removing that lock though. That was the ONLY lock I could use to gain 2 minutes peace, ugh!! 

We played outside a lot today. It was practically a summer’s day. We didn’t even need jackets!! Fingers crossed, Alvin & Susan! I hope this amazing weather sticks around! They will be visiting next month. When Daddy arrived home he joined us outside. The kids absolutely light up when Mommy & Daddy are both in on the fun.

Trent, aka “the big kid” (as Sebastian calls him), stopped by around dinner time this evening. Scott told him we were getting ready to eat, but that maybe Sebastian could play tomorrow. Sebastian added to that by telling the big kid that he had been waiting outside for like TWO HOURS for him, haha. Go Bastian. Sebastian is allowed to play with him in the yard or driveway, but no further. I’m not sure if the big kid is quite clear on this since they haven’t played together under the re-written Molly & Scott laws yet.

When Sebastian is doing something that he is not supposed to do, Willow often joins in. If Judah finds it funny, he will join in too. Typically Willow does NOT let Sebastian pull her around in the wagon, because it’s scary! Today she allowed him to fly her down the yard in the big wagon, because I made it clear to them both that it wasn’t okay to do that. Looks like I have some parenting tactics to re-write too!

Tonight we all laid on top of my/Scott’s bed and looked at the stars, moons, unicorn & butterfly that adorned the ceiling. The ceiling fan gave the lighted artwork a second layer. It was Sebastian’s idea to try using 2 of their Dream Lights at once in our room. The view was mesmerizing. Suddenly peace, harmony and silence.

Judah occasionally responded to things today – he used single words like “stop” or “no”, and also phrases & even sentences! He had thrown many of the Mr. Potato Head pieces on the floor. I told him that he needed to pick them up. He will usually help if I show him what to do, or if I do it hand-over-hand with him a couple of times. He didn’t help with this though. He was running back & forth from the bedroom to the living room. Finally he stopped at the bedroom door, looked down at the Mr. Potato Head massacre on the floor and said, “What did I do???” hahahahaa! How I wish I could go back in time & record that!!

Single words he uses often now are “why”, “stop”, “no”, “night” (night, night), “wait”, “Mommy” (yay!!). I heard these a lot today, always appropriately.

We were waiting in the van for Sebastian to get out of class, when Judah repeated a couple of phrases I had just said. Sebastian came out around that time. The excitement of his arrival combined with me adding “Sebastian” to the short phrases Judah had been repeating, resulted in Judah attempting to say his brother’s name for the first time ever!! I could tell by the number of syllables and the similar pitch I was using that he was repeating me, but of course the name wasn’t clear - it’s a hard one!! He also tried to say his sister’s name today, which is rare. I’ve heard him say that one pretty well before.

This evening he chased Scott down the hall and said, “Get back here! Stop!!” Those are other things he says a lot now, and always appropriately.

Every time I gave him his oral antibiotic today he said, “thank”. He said that for other things as well, but the med “thank” was consistent. I’ve never heard him say thank you so many times in one day. He said the same to Scott.

Sometimes Sebastian will randomly start up a chant. Willow & Judah nearly always join in. Sebastian’s chant this evening was only one word, “Mah- meeeeee” over & over. Judah had a hard time keeping up, but he did really well. Willow says it every 10 seconds of the day, so for her it was like breathing.

Judah is trying more often to put his shoes back on when they fall off, instead of going directly for help. His shoe size is 9 (but not all 9’s fit). I’m guessing he could probably still wear 8 ½. I just want so badly to keep the shoe size going up that I may be putting him in shoes that are too big, haha. Maybe it’s helping him learn to put his shoes on better though?? ;)

Judah kept his underwear dry today & peed when he had diaper on.

Judah pooped – that’s 2 days in a row! I wonder if the new medicine (Docusate Sodium) and/or the sea salt baths have encouraged his body to change. ?? We still haven’t heard from Dr. Greene about starting a new supplement while he’s on an antibiotic .  According to Dr. Solomon, this is likely completely safe,  but she still recommended getting the answer from him. By the time we hear from him Judah’s antibiotics will probably be done & we’ll be asking about Docusate Sodium interactions instead!

Judah took all the usual, 7.5ml L-carnatine, one probiotic, 2000 i.u. vitamin d, 1 tsp fish oil, oral antibiotic 4 times, cream antibiotic 3 times (he still acts like this hurts), docusate sodium twice, folinic acid w/b-12 three 125mg tabs.

Thursday, February 27, 2014

50% Krazy Kar, 50% Cars Soundtrack

After the boys had school we ate lunch & then rushed to catch the last 30 minutes of a play date on the other end of town. I'm really glad we went. Seeing familiar faces & being somewhere that doesn't involve stress over watching my kids is rare.. I wish that was a daily thing! It also gave the kids a play date instead of play time with the neighbor kids. The neighbor kids did come over as they came home from school. Sebastian told Cooper that his Daddy said he couldn't go to his house. I started to answer Cooper's question as to why Sebastian couldn't come over but Sebastian jumped right in, letting him know that his Daddy said his house was too far. I told Cooper they could play in the driveway if they wanted to. Sebastian asked him if he wanted to & Cooper said he had to get home. Sebastian said, "Okay, see you tomorrow!" and Cooper didn't say a word. When the 9 year old knocked on the door I just told him that Sebastian couldn't play today. He, however, did not request an explanation of a parental decision made by another kid's parent. I would think most kids would do the same.

I was hoping to have the kids out somewhere & avoid that situation all together. I didn't want Sebastian to be upset or end up in a stressful position over something that he did not create but wanted so desperately to work out. He's six, he needs a break! He was very mature about it, didn't get upset at all & seemed to understand the honest handful of reasons we gave him as to why he could only play with those kids in our driveway (the rule changed last night). I'm not as mad or sad about all of this today because I can see now that Sebastian will be fine, he's not completely focused on them anymore. He hardly mentioned them at all today & wanted to go to the play date. He's a bit upset about the situation on the inside, he did act out about some random & seemingly non-existent problems this evening, but not to a big extent. He played with those kids long enough to know that he needed different friends. I can see that now.

Judah was really sad to see that his Krazy Kar was in 2 pieces today. That happened while Sebastian was playing with the neighbor kids 2 days ago. I didn't think it was possible for someone to break that thing - actually they are advertised as being rugged & to have a long life. The Krazy Kar lasted 2 1/2 months here. Judah didn't get to use it a lot. Sebastian fell in love with it the first time he saw it & sort of took it over. He got amazingly good at maneuvering it. You can spin in a circle when you are on it (Judah loves to dance in a circle). We bought it for him as a fun toy, but mainly as a sensory toy. He kept trying to fix it after he saw that it was broken. Judah accidentally broke his Cars soundtrack CD today while pulling it out of the CD case. He had been eager to listen to it on the ride home & thrilled that he got to choose the music. He tried to fix that as well - and of course was very sad. He put the pieces together & said, "I know! Tape it!" (Sebastian had just said "tape it"). Ugh!! Poor guy.

Willow did well at the play date, typically she freezes. Maybe having her brothers there brought her comfort. She was much more herself, which was awesome, but also not so awesome as she fought me to play in the bathroom sink & refused to leave when it was time to go. I told Judah we needed to go to the car, he was so engrossed in watching another kid play a video game (which he had been much of the time we were there) that I had to say it a few times. Apparently the Wreck It Ralph video game is mesmerizing - he wasn't the only kid watching, but he was the only kid standing in the chair that the kid playing the game was using, haha. Then he looked up & I saw it register.. he jumped off the chair & headed for the door. He picked up Lego's when I asked him to while we were there. He has followed instruction very well today. I asked him to hug Willow after he stole a toy from her. He said "hug", then gave her a hug & a kiss.

The kids like to run around in a circle, chasing one another. It's a Judah game turned Judah & Willow game.. turned Judah, Willow & Sebastian game.. Mommy & Daddy got added somewhere along the way, without being given much of an option.

Judah pooped! Thank heavens! This would have been the intervention night. He took 7.5 ml L-carnatine, 2000 i.u. vitamin d, one probiotic, 3 tablets of 125 mg folinic acid w/b-12, fish oil was missed, oral (4 times) & cream (3 times) antibiotic, and started Docusate Sodium (only took one dose). He will be taking 2 mLs Docusate Sodium twice a day - supposed to help with bowel movements. Progress today was excellent, still booming! Most of the time he was willing to go to the bathroom, even initiating it himself a couple of times. In diaper all day (school, home, then right to play date). Pains throughout the day were there, not too bad. After the play date he started having worse pain up until he pooped. Pain was really bad when he would try to go on the toilet. Eventually pooped in diaper in early evening. 

Wednesday, February 26, 2014

Momentary Detour

Judah, phenomenal. Recently Judah has woken up as a new boy. Every day he is so different. Today Gramma came over to watch Willow while I took Judah to the doctor. Judah was upset that we had to leave Gramma. This lasted a couple minutes (in the past this would have been much longer & much worse). Then he just turned to sad, and pretty quickly back to understanding that this is just what is happening right now, which is a very mature turn-around for a 4 year old. He does this a lot lately.

When we got back from the doctor Judah looked around for Gramma and seemed surprised that she wasn't there. "Papa!" he said. He's been calling her that lately. I told him it was alright and that I would call Gramma. Instead I just texted her. A few minutes later he said, "call". He wasn't saying "cars"... he was saying "call". I asked him if he wanted me to call Gramma. Then we found her picture on the phone and he said, "Call mamama". I've never heard him try to say Gramma before and he wasn't going back to saying a word that is now easy for him "papa". He was definitely pushing to make this statement clear to me! After Gramma we went through the pictures on my phone & he told me again to "call". He said this many times until I figured out that he was asking me to call "Meemaw", so we did. They were both so touched that he had asked to call them. He's NEVER done that before, huge leap. Over the phone Gramma told him that she was heading back with chips for him, he smiled big, and after he was satisfied that she was coming back he was ready to hang up the phone, haha.

He's saying "I want chips" consistently for fries when I hand him only one or two at a time. I don't even ask him to use a sentence. Judah was thrilled today when I was able to sit down & play with him, one-on-one while Willow ate her snack in the other room. They all played with play-doh on the table together this afternoon, they were all very engaged. Willow took Sebastian's green waffle that he had made & walked away yelling, "Pisssie!! Pisssie!!", looking for the dog. She found Pixie and tried to feed her the green waffle. Pixie politely declined. I finally smartened up and put a plastic tablecloth on the table and underneath the table before they started the play-doh. I'm going to start making the play-doh, their re-used play-doh does not hold up well & I hate picking the little pieces out of the carpet.

Dr visit- She said to keep on antibiotics for toe a few extra days & if it isn't better they would drain it because it is sort of an abscess right now. She told us to do sea salt & tea tree oil baths for him... to buy Bag of Balm cream for him.. prescribed Colace (small dose).. and told us to go to a different pharmacy to fill his magnesium prescription. Our pharmacy has not been able to fill out (they are convinced she is prescribing Milk of Magnesia). This has been an issue for probably over a month. The dr said she has never encountered a problem with this prescription being filled before. We're getting a referral for an EEG per our request for one. She recommended seeing a nutritionist after we told her about the low cholesterol (she knows the other eating issues as well). She recommended adding lentil to his food & any protein we can get in him (to look at vegetarian diets maybe?).  She said OHSU probably won't do a scope (our other referral) because we will probably be seeing a nurse practitioner. This is why her initial referral had been to Legacy, where we would see a doctor. Scott left a message with OHSU - we would prefer them, but they need to give us the option to scope. She didn't seem hugely concerned about the blood in the stool.

I was so distraught & absent-minded after Judah's dr. appointment that I missed a turn somewhere on the drive home. Judah & I were suddenly driving through the countryside! I had no idea where we were. It was a pretty drive though. The look on Judah's face told me that he was wondering where the hell we were as well. He got to see lots of barns & tractors though! :) The GPS led me down a private driveway at one point.. things weren't looking good. But we found our way back. A 20 minute drive home turned into a 45 minute drive home! It was nice though, a momentary detour from life.

Today Willow & Judah took turns throwing their bowls of Rice Chex in different areas of the house. After he threw his second bowl, I told Judah that I couldn't give him any more. He was upset & sad. He started bringing me his empty bowl and his place mat, crying and saying "Check" (Chex). This is a really tough spot because I don't know if he understands why I can't give him more, if he thinks I don't like him and don't want to give him more or if he understands and is truly sorry. After some hugging & soothing, I gave him more. Not long after, I came into the living room only to find Chex all over the floor.. seriously?!?!??! I asked Judah if he had done it.. he very quickly responded, "Nouuh!" He was the only one eating Chex at the time, so I was sure it must have been him, but the quick & confident answer made me question myself. Willow was standing beside me, so I figured to be fair I would ask her if she had done it. She jibber-jabbered for a few seconds and then looked down & said, "Wiwoe did it." This makes me wonder how many times Judah has gotten blamed for someone else's actions. I was very grateful that they were both able to communicate to me what had happened, and it only took a few words! It was an important interaction & clearly reminded me that I can't jump to conclusions with my kids.

Sebastian played with the neighborhood friends today. He helped me clean up the Play-doh (that they only played with shortly due to the expectation that his friends would be over soon). He also cleaned the playroom. These were the 2 things I had asked him to do before playing with his friends. This new friends gig is working out well for me! He'll do anything! ;) This morning he was acting up soooo much. "Time-out" doesn't work for him anymore. Taking away TV time, bike time, etc. is what does the trick. I told him that if he continued he wouldn't be able to see his friends today. WOW. No problems at all after that.

I really wish he would have acted up. His time with his friends today didn't go so well today. He got hit with a basketball in the nose. One of his friend's (Cooper) took him into the forest.. this involved avoiding vines with thorns, spiders, etc. This scared him. He is clear now that he is not allowed to do that. Of course, we weren't expecting him to go into a forest - we had no idea that would need to be a rule! So we told him that if he can't see Cooper's house or our street, it wasn't okay. Scott came up with that on the spot! Nicely done, a very good rule. Hopefully he doesn't think to bring his binoculars, haha. It's just hard for me to be suddenly okay with him crossing the street with kids and playing with kids who ride their bikes in the street. Our street is not a busy street during the day, but people are coming home from work when he is playing.. so there is light traffic. Anyway, his friends told him that he needed to go home after he got hurt playing basketball & brought him home. He was on the verge of tears when he got home - he had been holding it in the entire time he was with them. This was so hard to see.. and sad. I told Cooper that Sebastian would be out later (which obviously he would not). The minute I closed the door poor Bastian broke down.. telling me everything that had happened. He told me, not long after, that he didn't understand why he was crying, that his body just felt like he needed to cry. He's a little kid that may be jumping a couple steps too far with these neighbor friends. Cooper, 7 yrs (the youngest), is more like 10 in the way he acts. The other boy is 9 and has the older sister who plays with them too. It just occurred to me that this is probably the issue, not us sheltering him too much. He wasn't mad at all when I told him tonight that he may not be able to play with Cooper in the future. He's got a good head on his shoulders for a 6 year old!

Sebastian is suddenly reading very well!! I'm just amazed at how far he has suddenly come with that! He reads here with either Scott or myself, & with Gramma when she has him. I told him tonight how proud I was of him for coming so far with his reading & for telling me about everything that happened with his friends today.

Willow kept requesting to play in the backyard today. She LOVES to swing now. She is extremely comfortable with it. After Sebastian came home from playing with his friends, his brother & sister wanted to play outside. I chased all of them in the backyard, I'm sure we all ran through dog poop numerous times. I wanted to do whatever I could to cheer Sebastian up, dog poop was obviously no big deal. Although I did make everyone leave their shoes on the porch! More shoe cleaning tonight. More laundry too.. Judah was laying in the dirt with his cars when we were in the backyard.

Judah really wanted to go outside to play with Sebastian's friends. At least he doesn't do this every time. I had to stop him. Life is so complicated with kids!!!

Judah took 7.5mL L-carnatine, 1 tsp fish oil, oral antibiotic 4 times, cream for toe 3 times, one probiotic, vit d 2000, 3 tablets of 125 mg folinic acid with b-12.. no bowel movements and no pain that I heard or saw. He was understanding, seemed to be answering more questions & doing some of what I asked, still fighting to get him to the bathroom, but he does everything with no prompts at all when he finally goes in. In diaper all day mostly due to what we were doing. I laminated some papers Meemaw had given us for Sebastian a while back - tracing letters. Hopefully we can work on those tomorrow. I also printed up more clothing items & accessories for him to learn. Although his speech therapist at school has switched to having him identify people he knows through pictures.

Tuesday, February 25, 2014

Sebastian's Daddy Is Making House Calls

What a day!! We stopped only once at the house for a 60 minute lunch break. We never made it home permanently until it was almost dark!

But when we did make it home, Sebastian still had play time left with his friend Cooper. Cooper & Trent (the next new neighborhood pal) were waiting for him. As we got out of the van they were already in our garage! Sebastian told them that he needed to go to the bathroom before he could play. I asked Trent his name. Immediately after he told me he looked at me somewhat confused and said, "His (Sebastian's) dad came to my house last night.. ?" His look was so funny.. confusion & a tiny bit fearful written all over his face.

Scott & Sebastian went to Cooper's house last night to meet Cooper's parents. All went well. Cooper's mom said that Sebastian was welcome there anytime. Sebastian remarked on how he thought it was weird that Cooper was doing homework (he's 7). Scott said, "I was surprised by how big he was!" I said, "Really?? I thought he looked 7." Scott told me that Cooper's mom is a little Asian lady with a funny accent, which made it difficult for Scott to completely understand her.

Back to Trent. I asked him if he was Cooper's brother (assuming so since Scott had gone to Cooper's house). He told me "no". I said, "Oh, he must have gone to the wrong house!!" Scott didn't tell me he had gone to two houses last night, but  he sometimes leaves things out of his stories. But then I started wondering, so I asked Sebastian if they had gone to Cooper's house last night. He said very confidently, "Yes." Cooper was on the other side of the house in the playroom. What harm was there in triple-checking? I asked Cooper if Sebastian's daddy had gone to his house last night. He said, "No" and casually shot his ball into the basketball net. ???

The night before, Cooper had given me very crazy directions to his house, but kept pointing to Trent's house. I now realize that he was pointing in the direction of his house, not at his house. He said to go down the road, turn, go down the alley, reach the gate.. press a call button, walk across a field.. etc.

After Cooper confirmed that Scott & Sebastian had not come to his house last night, I tried to think of a simple question that could be easily answered by a 7 year old, with an answer that would help me understand what was going on. "Cooper, what color is your house?" "Green" he said. Then I realized where he lived, it was around the corner.. where one of the cops on our street lives (or so I had heard). Later I asked him if it was dark green, just to make sure!! The house around the corner is forest green. Cooper said, "No, it's BRIGHT green!!" Then, out of the blue, he was suddenly able to give me human directions to his house.. his dad was not a cop.

I called Scott & told him he went to the wrong house last night. "What???!" he blurted out. "That lady told me it was Cooper's house!!" I asked if he said Cooper's name to her.. he said, "Yes, a few times!" When he got home I told him that he needed to go to a different house tonight & introduce himself to more parents. Again he says, "What?!?" He took Sebastian & a flashlight. They pressed the call button that Cooper had talked about, they journeyed through the big muddy field that Cooper had described, they saw the random barnyard animals that Cooper had mentioned. They got to Cooper's house, covered in mud. A man who looked to be about 50 years old answered the door. This man was Cooper's dad. They told Scott that they tell Cooper to stay within "yelling distance". They also told him he should hear how loud Cooper's gramma can scream! Apparently she is the loudest screamer in the family. It seemed as if Scott & Sebastian had somehow crossed the Oregon border on their journey to Cooper's house, and found themselves in rural Arkansas.

True story.

Judah had an AMAZING day, talking more, understanding well, and just so different! Yet he acts as if he is nearly bored sometimes, as if he has always been able to do these amazing things & is borderline irritated that I am praising him so much.

At the park he basically ignored me after the first 10 minutes of me following him around, constantly on his heels. I definitely got the feeling of, "Leave me alone Mom, I'm fine!!"from him, which will likely be his first combined sentence.

I said halfway to myself, "Now Judah.. where did I put that knife.." and he points to it.

He started to walk towards the kitchen to ask for more chicken, then quickly turned around and went back to get his plate & brought it to me (which he never does, but has done once very recently when I asked him to).

He ran up to Gramma when he saw her, gave her a big hug, held her hand, & was talking to her as they walked around. Totally new.

I told him to go potty, he easily followed me but I couldn't go into the bathroom with him because every kid in the neighborhood was suddenly in my home. I came back to find him fully clothed in the living room.. and there was pee in the potty. He just did it all on his own- totally doesn't need me!

I handed him his pajamas tonight and he said, "No, bath" and walked into the bathroom, standing at the bath. Another first.

He took his antibiotic medicine with ease most of the day, 2 out of 4 times just grabbing it and taking it on his own. One of those times he was in the playroom surrounded by the neighborhood of children. That one he grabbed, took quickly and handed right back to me.. again, I'm annoying him (I think). Giving him this medicine has been a real struggle since we started it 4 days ago. You would have never guessed that today.

Willow & I went to the dollar store after we dropped the boys at school. I am beginning to get obsessed with anything that looks remotely usable for organization purposes. I bought 30 items, not all organization, but quite a few. In the middle of our shopping experience I turned around to see Willow tossing something to the floor that looked to be a small soccer ball. Then CRASH!!!! Yeah, it wasn't a soccer ball. It was a piggy bank! I apologized profusely to the employees as I picked up all of the big pieces. Willow was headed back to another piggy bank right after this happened..?!? Why on earth would you put the piggy banks that look just like sports balls at BABY level! I offered to pay for it (it's the dollar store, who wouldn't!), but she wouldn't let me. I'm so thankful it was the dollar store where she decided to throw a ceramic piggy bank.

Judah did incredible at speech therapy. Willow took part of a nap on their couch after she spilled an entire cup of water on it, uggg!! That doesn't dry in 50 minutes.. they're gonna know!! His therapist didn't care.

After therapy we went to the park to meet Gramma & Sebastian. The kids were WILD. They acted as if they NEVER get to go to the park! Ok, so yah, they rarely get to go to the park.. it was completely justifiable wildness. I could never take Willow & Judah to the park without another adult (or 2). Mom & I were hardly able to watch them for less than an hour! We seriously needed a 3rd adult. At one point Judah jumped off the HIGHEST drop-off they have at that park, barely able to grab onto the pole that was next to the drop-off. He slid down about a foot before I could finally reach him.. and eventually get him off of the pole. There was no one provoking him to do this. Sebastian & Willow weren't even on that play structure!! After that he took me on a walk near the water, running away down the sidewalk every single time I asked him to go back to the playground. We went to take a close look at the train tracks after that. We were there for a long time. I told him he could watch SpongeBob when we got home. That slightly motivated him, he almost started to walk away. Once I mentioned playing Cars on the computer he was able to walk away.. but then made a pit-stop at the carousel. Leaving was hard!! Probably because they never get to go to the park Molly!! I told Scott tonight.. we have to start taking them to the park so they won't be so wild & dangerous when we take them once a year (elaborating).

Sebastian's neighborhood friends are Cooper (7) - a little wild, much freedom (old parents??) & very outspoken. He is overtaking Sebastian's bike. That's the only problem Sebastian has had with him, otherwise they are great. Then there's Trent (9) - very mild & friendly. Trent's older sister Sofia (age?) was here today too, mild as well. She walked around outside with Sebastian for quite a while. He showed her the garden & his rock collection on the porch. Sebastian said they talked about the seasons they liked & "stuff like that". Apparently they both like summer. They were out there for a good while as Trent, Cooper, Willow & Judah played in the playroom.

Judah can slam dunk with one-hand! Like quick!! Our basketball hoop is about a  foot taller than him. He kept up with those boys, easy. Cooper kept calling him "little fella" or something like that. They all seemed to connect. Judah hardly talked, but he was interacting well & very appropriately. At one point I walked in and saw Willow standing in the middle of everyone with Sebastian's gigantic Incredible Hulk hands on, just looking around. Sebastian played outside with his friends until dark. He's completely comfortable & himself with them. It's fun to see.

Judah took 7.5ml L-carnatine, 1 tsp fish oil, 1 probiotic, vitamin d 2000, his oral antibiotic 4 times & his cream for his toe three times (still looks the same). He has a doc apt tomorrow. We'll discuss the toe, blood in stool, constipation, referral for scope - already done, his progress.. we have a lot to talk about, jeez! It may turn out to be longer than the usual 1 hour "check-up" visit! I seriously do want to bring a recorder, she talks so fast.. information just flies around the room and we aren't able to catch half of it.

Cute Sebastian anecdote courtesy of Gramma - Sebastian told me today as he reworked the entire train table track that he was the train master. I encouraged him to say more and he told me a "secret" because he trusts me. (here I am blabbing so shhh...). The trains come alive and talk to him when no one else is around. He was quite serious so I kept a straight face, of course. He built a beautiful setting with trains artfully displayed and I left the room so he could listen to them. : )

Monday, February 24, 2014

Meat Eating Tough Little Girl!

Sebastian told me a story about a girl named Chebella. She's in his class. He said she took him by the hand, then the arm.. "and then she took my whole elbow!" he said. Apparently she was walking him over to an area of their classroom they aren't supposed to play in. A kid started laughing. Sebastian didn't understand what he was laughing at. Chebella said, "Be strong! Be confident!" Sebastian then asked me, "Mom, what does confident mean?" I told him it meant to believe in yourself. Then he says, "Oh never mind, she didn't say that." hahaa

Judah, Willow & I were in the bathroom this morning. Judah was on the toilet & Willow was on the kid potty. As I was helping Judah the dog started barking. She was barking at the guys cleaning our roof. I yelled from the bathroom, "Pixie!!" Then Judah follows that with, "BeHAVE!" He smiled as I smiled at him & laughed. I repeated what he said & laughed some more. I've never heard him say that before. Yay!!!

Today was another awesome day for Judah! Judah answered some questions today for me - he said "no" when I asked him if he knew where his cup was (this was after I gave him a little time - which is important with him). He was patient when he had to wait until we got home to drink his smoothie. He understood what I was telling him (he hadn't eaten much lunch so I'm sure he was hungry). He was patient & well-behaved (all day long) when Sebastian went outside to play with Cooper and he had to wait for quite a while to go out. Willow was also cool & calm. Once outside, Willow & Judah were energized. Judah approached Cooper many times, once repeating "cool!" very clearly after Cooper said "cool". Another time Judah did the "On your mark, get set, go!!!" for Sebastian & Cooper (they hadn't even asked him to). Then Sebastian and Cooper took off and raced down the sidewalk. Judah was able to share Cooper's Matchbox car with him and interacting well. He wasn't wild like last time. Willow was suddenly riding the plasma car like a dare-devil, backwards down the driveway at light speed for a 2 year old, and loving it! So that's great. She did some good swinging in the backyard today too! She remembered exactly how to do it!

Judah's pains got progressively worse throughout the day. He was trying hard to poop a number of times today. I gave him Miralax & Benefiber. Scott gave him another Miralax when he got home. I massaged Judah's belly. Nothing happened. We waited until past bedtime, hoping that something would happen. Unfortunately we ended up having to do an enema. My stomach just goes to knots when I know we are going to have to do one of those. No kid should have to go through that. I hope that vanishes from his memory. We have a referral to OHSU to get some GI help.

Willow gets so super happy, energetic & playful when she is secretly exhausted. The second I lay down with her she is out. It's so weird. Tonight she was dancing on my lap while periodically grabbing handfuls of turkey and stuffing them in her mouth. She's a meat lady for sure. I discovered a cut on her leg. We cleaned it & bandaged it. She was cool as a cucumber, almost fascinated. She took the Band-Aid off to look at her cut a few times. The boys would have been going berserk through all of that! Judah landed on her tonight while she was laying on her stomach. She didn't cry but she did get angry at Judah. She's a meat eating, tough little girl!

We played out in the rain & mud today. Judah was literally laying in the mud, digging & throwing mud into the air. Some landed on Willow's head. She wasn't phased. He does the same with the rocks until I show him how to lay them down. Then he'll do it that way.. for a little while. So anyway, lots of muddy clothes & shoes today.

Cooper came over. We all just assumed it was a delivery person with a package when we heard the doorbell. The kids saw that it was Cooper & suddenly they were attacking me trying to get out the door & play with him. None of them even had shoes on! Cooper & Bastian raced up & down the sidewalk on different riding toys & the bike. Cooper tried hard to convince me that it would be fine to let Sebastian run around the neighborhood with him & to go see his "property". I'm already at the point where I treat that kid like my own.. as far as that stuff goes. I told him that Sebastian's Daddy would come over to meet his parents tonight & then we could do that kind of stuff. Scott did go to meet them tonight. I let Sebastian go to a certain point down the sidewalk, where I could still see him. It was lightly raining the entire time we were outside playing. Judah, Willow & I chased the boys down the sidewalk once, then I kept Judah & Willow in our driveway as they fought hard to escape.

Are we too protective?? Cooper is seven. Sebastian is six.

Sebastian fell on his bike while flying through the yard on the wet grass. He landed with his left leg bent in an uncomfortable position. That scared me. He did not shed a tear & toughed it out - because his friend was there.

Cooper came in & played with Sebastian & Willow in the playroom. Judah had had enough & decided to rest on the couch & watch Sponge Bob. I laid next to him, in complete agreement of his Sponge Bob plan. Apparently Cooper coached Sebastian on karate in the playroom. At one point I heard him tell Sebastian that he wasn't worth his time, and something else really mean. Sebastian asked him what that meant & Cooper gave no answer. Sebastian told him that he thought they were having fun. I'm not sure Cooper even really understood what he was saying. They went right back to playing.. when it started to get dark I had to tell him to leave, quite a few times. He matches Sebastian's energy level & comes close to hitting his volume level. Although Sebastian's shower volume level is a completely different story.

The roofers cleared the moss from our roof, sprayed our whole house with water and blew away all of the scattered mulch & debris that was in our driveway & walkway. They were here for over 4 hours! Supposedly we have a vent on our roof that needs to be stapled, sigh. He asked if we had a leak.. ??!

Sebastian had lunch with Gramma, Subway on the go. She brought him seashells and sand from San Diego. Very cool gift.

Judah had L-carnatine 3mg (I forgot second dose), one probiotic, vitamin d 2000, 3 folinic acid w/b-12 125 mg each, forgot his fish oil, had his oral antibiotic 4 times & his toe cream twice. His toe is looking a lot better, thank goodness. He took Miralax twice & Benefiber once. Had a large liquidy, bloody bowel movement shortly after we gave him an enema. He has a doctor appointment on Wednesday. Blood has worried her in the past, so I'm sure she will have concern (I know I do). This was not a small amount like it had been the last time we talked to her about it. We have a GI referral to OHSU (they just got it in today), hoping to hear from them SOON.

Sunday, February 23, 2014

Grocery Stories

Judah is still doing AMAZING. When you pay close attention, you can really see the depth of his progress. Tonight I told him that I needed his plate to give him more nuggets. I asked him to go get it. He went to the table, picked it up & brought it directly to me! He has NEVER done that before. I've tried so many times. Sometimes baby sister intervenes & brings it over, in her natural helpful manner. The other day she was standing outside the tub and started washing Judah's back while he was in the tub (for quite a while!).

Poor Judah has to take so many friggin' meds & supplements right now. He has to take one pink liquid (antibiotic for his toe) 4 times a day!! His toe is looking a bit better, and he doesn't scream bloody murder when we put cream on it now.. not as loud anyway.

Scott tried to take the boys to the park while I put Willow down. It started raining. They had to skip the park & go to their next stop, the grocery store. Scott said Judah was incredibly well-behaved & happy the entire time they were shopping. Sebastian told some entertaining stories when he got back.  One was about a 3 year old following them through the store. Apparently this kid was hissing like an angry cat. Sebastian growled back. The other story had something to do with a huge guy knocking Scott over. He tells that one & throws his arms high & wide in the air to demonstrate what a giant the man was, smiling & laughing the whole time.. making it impossible to understand the story.

I spent a long time making a seasoning box for Scott today. It's really pretty - orange/pink Hello Kitty. I even made dividers! Last night I finished up combining, storing away and throwing out spices, oils, etc. We have a counter now! The rotating spice rack & the pull-out spice rack are the only places we have spices now. After everything was combined & thrown out, we were left with a re-fill supply (overflow) to put in the garage. I also made labeled box of "spices rarely used" in the cabinet.

Willow & I played in the backyard for a long time today. She can swing on a real swing now!! She is our only kid that I have successfully taught the method of swinging - "Kick out, back in!" She did it as soon as I said it. She can even ride on the 2 person "rocket rider" we have on our swing set. It's  higher than the swing! She climbs up on her own. This was a reality check - she has grown a LOT in the past few months. Today she took care of her doll & her Dora head (bath Dora that sticks to the side of the tub), wetting & brushing their hair. She got out her diaper cream & wanted to put it on the baby. She dropped the baby this morning and said to Scott, "Oh no Daddy, I dropped the bebe (how she says baby)". Tonight she laid on the floor between Clifford the Big Red Dog and her baby that wears a tiara and told them both, "night night".

Judah said "night night" very clearly tonight, much clearer enunciation than most people! He said some "I want" sentences with ease today.

Judah had his 7.5 mL L-carnatine, 125 mg (times 3) folinic acid w/b-12, vit d 2000 i.u., probiotic, oral antibiotic 4 times for ingrown toenail, cream 3 times on toe. Ear drops are done!! No bowel movements - which means we should have intervened tonight. I don't know how much more I can put this boy through. Tomorrow we will likely start another supplement (asking doctor first about any interference it might have with the antibiotics). And we'll have to do something to help him poop if he still can't go. He was fairly uncomfortable tonight, not bad but definitely needing to poop.


Saturday, February 22, 2014

Bauman's and more..

Music therapy went very smoothly this afternoon. It was the most relaxed session Judah has ever had. He's never come close to being that relaxed & focused during a session. He was concentrating on doing what she asked, as well as pulling from his memory what he already knew he was supposed to do. It was really cool & went by really fast! He's never once had a hard time leaving any of his therapy sessions. When it's time to go he says "bye!", grabs my hand & heads for the door, haha. Only once has he had difficulty starting a therapy session, and that was because he was upset when we arrived. At speech therapy he sits at a table with his therapist for 50 minutes doing therapy. With Angie we only do 30, but it is a much more stimulating room because it's a music studio! She has an array of unique & fun instruments. She allows and teaches him to use them in many different ways.

I'm going to post a few links on here to things that Judah really enjoyed during music therapy, and 2 things he has shown me on the computer that he wants - just to help me remember in the future.
  • He loves Angie's rain stick.

  • 3 Green & Speckled Frogs song is a song that always makes him smile.

Judah talked the entire way to therapy, gazing out at the landscape, screaming when we passed semis (passing semis scares me too), but he was screaming in a fun way. After therapy we drove to Bauman's. He was still fascinated with the landscape and talking. He even pointed out a brightly colored purple house to me by saying, "Purple!" And he was right, it was incredibly purple. I had never seen a house that purple before in my life.

We searched for Papa when we got to Bauman's. "Papa.. where arrre yooo?" he said as we walked around the parking lot & through the gardens. He can say "Papa" perfectly now. He did not run away, was very calm, holding my hand the entire time. After Papa, Sebastian & Willow arrived (Gramma is in San Diego), we all played on the playground. ALL of the kids are now enjoying the huge tube that you can ride in as someone pushes it down the rails. Scott arrived not long after, after driving for an hour and a half because of a traffic jam & getting lost after that. The kids all rode in the wagon while Papa pulled them. We found a place to eat. Sebastian ran around on the grass. Judah ran in a big circle around the greenery on his own. Papa said Judah had never done that before. Sebastian pulled Willow around in the wagon while Judah ate his late lunch. Scott, Papa and Sebastian all snipped some rosemary from the gorgeous rosemary bushes. Sebastian created a pile of gigantic tree limbs to take to Gramma & Papa's. He has an "experiment box" there. He ended up taking only one tree limb, but of course he wanted to keep them ALL. I don't think there would have been room in Dave's car for all of those! :) Willow made me take her down a big tube slide, apparently that was a first for her. Judah is now fearless of the Bauman's tube slides & tunnels. Willow took me to see the animals. She was laughing at the goats, she loved the animals! I made a 50 second video of her admiring, laughing at and playing with a very friendly little goat.

When we got home Scott took Bash down to the park to ride his bike. I cooked a honey, butter baked chicken dish for dinner. No, I'm not lying, I really cooked. I ended up substituting many ingredients (I thought we had them!) and baked the chicken instead of roasting it. It turned out tasting like really good honey, chicken deli meat slices, but unfortunately they were in chicken breast form, haha. It was alright, the taste was interesting. Sebastian ate it, which means I will be cooking it again. We found out recently, after months of trying to get him to eat cooked vegetables, that Sebastian prefers his carrots raw. Hand him raw baby carrots & he will eat them!! He just happened to mention that to me recently, that he only likes "crunchy" carrots.

Tonight was an explosion of kid energy & fun in our house! The kids were not in full force, they were in MEGA full force! Judah would run into Willow, knocking her on the floor & she would get up laughing & chase after him. It was that kind of thing, for HOURS. The kids were extremely happy & playful. They had an awesome evening. But I swear, bedtime could not come soon enough. Being an adult in this chaos was well beyond exhausting!

Judah's interactions tonight were just beautiful. His progress has been flying high all day, even higher than yesterday. I can't explain how this feels as a mom. He is beginning to respond to me. I've been dreaming of him doing that for literally years. He is starting to let us know some of his opinions & likes beyond the things we have known for a long time. Now I can see what makes him laugh. He laughs now, 100 times more than he used to.  Today I saw that he had taught himself how to use the mouse on Scott's computer. He is eager to learn things. And I love, love, love that he has siblings that are his best friends. They are such good friends.

Judah's supplements today.. Folinic acid w/b-12, he took 3 125 mg capsules. 1 tsp fish oil, 1 probiotic, 2000 i.u. vitamin d, ear drops twice, oral antibiotic 3 times (weren't prepared & missed a dose), cream antibiotic 3 times. No bowel movements but acted like he was feeling some pains this evening, seemed minor.


Friday, February 21, 2014

New Willow, Phenomenally Progressive Judah & Sensory Sebastian!

Sebastian recently asked me why Judah dances in a circle. I told him (I learned this not long ago) that Judah does that because it feels good to him. The world of sensory is interesting. I said, "It's like how it feels good to you to jump and then clap your hands one time." Then he got it. No more questions. Sebastian used to spin. I had asked him once why he did that (before my sensory knowledge). I can clearly remember his answer.  "My body tells me that I'm supposed to do that." That is a dead-on explanation of sensory. He's had some interesting sensory thus far in life. He sucked his pointer finger as a baby/toddler. The spinning was the summer before last. I believe when that stopped the jumping started, just one jump. Now he's added the clap after he lands. He does a very short dance outside the car everyday when I drop him at school. Judah's sensory involves pressure, forcefully running into things, jumping, rolling & likely taste. I understand the pressure one, I have that at times. We all have ways of stimulating our senses. It would be cool to know what other people's sensory outlets were. I'm very curious to know what Sebastian's will be next.. and ten years from now! :)

Tonight we had to torture Judah. Scott & I both felt so bad. Sebastian was a little freaked out & Willow wanted to get all of the same "medicine" Judah was getting. First, the fish oil. That was easy tonight, thank goodness!! I asked him to "take" it and he said, "take". Then he held it for a while, entranced in Sponge Bob television, and slammed it down when I looked away.

Next up- pink, strawberry flavored medicine that he must take orally 4 times a day for his toe infection (doc told us today that it was infected). I approached him gently, as I was very much aware of the hell that still remained for him. To a kid, this stuff is horrible, ten times worse than what it is for us. Willow & I smelled it. I eventually got Judah to smell it. He let me know he wanted my help when I asked him if he did. Willow wanted to drink it. Judah held it some, then gave it back. He was laughing - he always laughs beforehand. Eventually & unfortunately Scott ended up holding Judah's head back & restraining him some. Judah did open his mouth & take it though. I couldn't tell if he liked it or not. I hope so.. that one & the cream (next) will both be 4 times a day.

Judah hates it when we mess with his toe. It probably hurts like hell when we touch it. Every day we clean it & treat it with Neosporin, twice a day. Today the doctor told us it was infected. If the infection doesn't heal on the meds then we will be referred to a specialist who will remove Judah's toenail and "reset" it. Apparently his toenail is growing in the wrong direction. This kid has MORE than enough to deal with already!!!!!!!!!!!! I don't understand how antibiotics could fix this entire problem. But I don't need to understand it, I just need it to work.

We did the cream, he screamed bloody murder. Hopefully the pain goes down so he can tolerate this stuff easier. After that we did his ear drops. We took breaks between these things. We aren't monsters, not completely anyway. Since he is mainly non-verbal we really don't know if his ear, toe & belly are hurting. How can we know everything that we need to be doing to help? I don't think it's possible to know that. Thankfully we haven't had to add suppositories or enemas to his list of parental torment. He would probably load up his Cars backpack with toys & run away at that point.

There was a migraine trying to creep into my head all day. I was able to lay down for a bit while Scott worked in the living room, trying desperately hard to focus with some insanely behaved children running about. The minute I left to take a nap, it sounded as if our children had all scarfed down 10 pounds of sugar & caffeine........... and multiplied.

Sebastian spent a good part of the day asking Scott &  myself when his new friend would walk by, when he would get out of school, if he would stop by, if he should go wait outside, if it would be okay if he went to his house... endless. I don't know if that kid ever came by but Sebastian had stopped talking about him after I got up from my nap.

Sebastian was upset about something after school. He threw a huge tantrum when I went in the door first at home. He wanted to be first. More tantrums came after I told him that he wasn't being nice to Willow. He said that everyone tells him that he isn't being nice.. then he listed off some people. His teacher was included in that small list, I need to ask him about that. But he definitely didn't want to talk about anything hard after school. I hugged him for a long time. I don't know what happened at school or what he was thinking about, but I hope he isn't holding things in. I don't want him to learn that.

Today was definitely a day of PROGRESS. Willow started saying some new things on her own, really making her opinion and decisions known. None of it was to gain attention & she wasn't copying others (she does these things a lot). It was so neat to see that side of her - she is growing up! Judah, oh my god, Judah. His school speech therapist came by this morning to teach us some Star Program speech therapy tactics. She didn't show us much that we didn't already know, but her info was good reinforcement. She gave us a few papers to keep & her motivation was obvious. She even asked if we wanted to do some Star Program training with the autism specialist & herself at our house. The time with her was also an opportunity outside of school to ask different questions regarding Judah. Judah was excited to see her & tried to leave with her, telling us bye, waving & walking out with her hand-in-hand with a big smile on his face. Willow followed.. in her bare feet. Judah was progressing after she left & even when she was here! He called me to his room, FROM his room several times to help him with his racetrack. "Mommy!!!" was heard very clearly through the house each time. That was pretty cool. Usually he approaches me. He said "not cool" to her when she asked him if he wanted to do work.  haha! He was saying different things & interacting while she was here. He sat down with us for a while. He crossed his arms on the table, just like Rachael was doing, haha.

As soon as Rachael left I tried the "I Want ____ _____ _____" laminated strip on our fridge with Judah. I held it up & he said (without me saying a word) "I want Cars", pointing to each word!! Give that boy some Cars! I gave him a car, but learned quickly that he was talking about the movie, duhhh. He said the same sentence later when I was forcing him to watch his music therapy session video on the computer. There was a row of videos that he had recently watched on the screen as well. He kept pointing at them and saying "cars!!" I told him that I wanted to watch Judah. Eventually he said, "I want cars" and yes, I turned on one of the Cars videos. He definitely gets rewarded for sentences! That is HUGE!!

When I was getting ready to leave & pick up Sebastian I asked Judah if he wanted to go with me. At first he told me "cars" because he was watching Cars on the computer. So I gave him options - stay, watch Cars or go get Sebastian. I'm a confusing mom. He said, "nope" to all of them. Then he said, "stay" Wow! Then he said, "bye" Haha! Then he made a kiss sound when I leaned in to kiss him on the cheek. While I was searching the house for my shoes (ironically I had my keys & phone!), Willow walked by Judah and said, "hi Judah" and waved. She is so cute. Judah wasn't looking at her. He was still very focused on the cars on the computer screen, but he still said, "hi" right back! Today was just phenomenal for him. He hasn't had the folinic acid for a few days now since we ran out. That's the only change in supplements.

I asked Rachael about supplements & speech - she seemed completely oblivious to these things that are all over the Internet & very talked about by people who work in the field of autism, like she does. Maybe she just isn't supposed to promote or negate it? Food allergies, same thing, no clue. She DID however give me a possible reason why Judah's voice sounds strange most of the time. The process of learning to speak involves a phase where you are listening to the different sounds your voice make. At this point your voice tends to go up or down but isn't really stable. This is the only time someone has given me some kind of valid answer to this question. It's a question that I've even had to answer in paperwork, yet no one could ever explain to me why this was happening, if it will change, if something is wrong, etc. She could be wrong, of course, but I really appreciate her sensible answer! I quickly & accidentally debunked her information about the steps we go through while learning to speak. I told her that my friend's kid started speaking overnight (there are numerous stories online about this type of thing.. maybe she doesn't have the Internet? haha). So obviously this kid didn't go through the steps. She seemed shocked.

One of the best Sebastian lines I heard today was.. "My brain was squishing and turning and it wrote out a message." Hahahaaa! I love that. The message was to do something that involved another kid.. I can't remember. He was probably talking about the neighbor kid, haha.

Scott had the Bluetooth on in the van while he was taking the kids to pick up Judah's medicine. I texted him using a curse word in the sentence. I had no idea I was on speaker, a very loud speaker by the way. Apparently the Bluetooth in the van played my text, not once but twice, back to back. That's good parenting. ;)

Judah had 7.5 mL L-carnatine, 1 probiotic, 2000 i.u. vitamin D, fish oil, ear drops twice & new meds one time - cephalexin 250/5ML, one teaspoon. Mupirocin (Bactroban) Cream 2%. He had a large, mushy poop in his diaper, still wasn't enough to pull him away from the Cars videos though!! haha.

Thursday, February 20, 2014

Things In Motion

Judah was fascinated with skiing on the Olympics this evening. "On your mark, get set, GO!!" he yelled right on cue. He would say, "jump!" and "ohhhh" if someone fell. Skiing, who knew??

Scott & I went to a support group/parent training tonight. You wouldn't believe how many people in that room had 2-4 year olds  obsessed with Thomas the Train and/or Cars. There's got to be hypnosis involved that media. Cars & trains have been Judah's favorites forever, but after seeing his excitement about skiing I'm thinking he may just be into things that race, things in motion, things that go fast.. or maybe tracks?? Race track, train track, racing down a track on a snowy mountain.. Man I would have been good at $25,000 Pyramid. Look out Betty White. ;)

Dave watched the kids while we were at the meeting. He said that he heard Judah say, "Papa" a few times clearly. Judah yelled, "Papa!" when he heard Dave's voice & realized he was here. Willow and Judah were both in the bathroom with me at that time. Willow immediately panicked. She was standing on her tip toes on top of the toilet seat, reaching to play with the running water in the sink. "Papa.. papa.." she said, trying to get down as quickly as possible. They bolted out of there like the bathroom was on fire.

Sebastian is reading the Scooby Doo phonics set of 12 books that Dad sent him for Christmas. These are working out really well for him! We need to get some more of these sets (other than Scooby Doo, 12 books is plenty, haha).

Judah communicated well again today. Again, repeating a lot of the Elmo movie as he watched it in the van. When we were outside playing his personality sparked, his energy flew and words came out of his mouth (not really comprehensible ones) as quick as he could get them out! This was because a neighbor kid had come over to play, for the first time ever. Willow froze in the garage & watched, eventually walking out to chase Sebastian with Judah. Sebastian was happy & eager to befriend the neighbor kid. Judah was beyond excited, involved & playing the entire time. A few times he approached the neighbor kid closely with a big smile on his face - I was nervous because I didn't know the new kid, I didn't know how he would react. But obviously, the new kid is just a kid!! Kids just want to have fun, they don't care about other stuff. And if this kid turned out to be mean I could just send him home!  :) haha. Very few understandable words went from Judah to the neighbor kid. The neighbor kid caught none of them. I was nervous that Judah would get hurt, he was too excited & on top of that Sebastian had Judah's car attached with an old jump rope to the Krazy Kar he was in control of. Judah was screaming and fearless. I was just waiting for the crash. I was nervous about how to handle the entire situation.. the communication, wanting to make our first neighbor kid visit good, fearing Judah would get made fun of or questioned in front of Sebastian.. things like that. It was really hard, surprisingly hard.

The neighbor kid had initiated his visit by stopping at the top of our driveway, staring for quite a while at Sebastian & Judah. He seemed fascinated with their ride-on toys being connected by a jump rope. His name is Cooper, he's 7. After we unattached the Krazy Kar for Cooper to ride, Sebastian grabbed the jump rope & pulled Judah around in the little red car. As usual, Sebastian was moving at a very fast pace. This made me very nervous. Helmets!! Judah fell on the cement at one point while he was running. The palms of his hands rubbed against the cement as he fell. He was in a lot of pain, it was scary, his palms were fire red. He recovered in 20 minutes. Sebastian approached me after Cooper left & asked me if they could be friends. I told him that they were already friends!! Cooper & Sebastian came inside at one point so they could ask my permission to go to Cooper's house and  Cooper's friend's house. This was a first for me. I had no idea what to say. I took the safe route & gave them the "maybe some other time" and then told Sebastian that Daddy would be home soon as they walked out. As the door closed behind them I was instantly aware that I could have just embarrassed my son to death by saying Daddy. Thankfully that wasn't an issue at all. I should have just said Scott, haha. Sebastian calls everyone by their first name anyway!!

Judah's school speech therapist is coming tomorrow to teach us some Star Program techniques. She said to read "Brown Bear, Brown Bear" to him at home. I don't think we own that...

Judah has a dr apt for his toe tomorrow, it looks kind of bad. We tried to get him in today but there was no one that could see him. We never had that issue at the other clinic.

I used the eye drops my eye doctor prescribed me to help me gain some decent night vision. Less than 20 minutes after taking them my vision started to get fuzzy, then blurry, then worse.. then I couldn't even read the clock on the dashboard!! Thankfully I wasn't driving. Scott & I were on our way to the meeting. I ended up sitting outside the meeting, listening. Being in a room filled with blurry people did not sound remotely comfortable. A friend of mine approached me, I could make her out in the human body blur walking towards me.. after that I was hoping no one else would approach me! Such an uncomfortable way to be and so scary! I looked at my eyes in my compact mirror, my pupils were tiny dots!! I called the on-call eye doctor. He told me, "Yah, I wouldn't use those anymore" and could give me no real clue as to when my vision would clear. He happened to be our old eye doctor, not someone I liked at all. My vision came back when the meeting ended, so total maybe an hour and a half of non-working vision, stress over people approaching/talking to me & paranoia that my sight was about to disappear completely (my biggest fear by the way). I was able to hear pretty much everything sitting outside of the meeting. Scott sat in the room full of blurry people.

Judah took all usual meds, L-carnatine 7.5 mL, vit. d 2000 i.u., fish oil 1 teaspoon, 1 probiotic, eardrops just once today (missed other dose). He drank a BUNCH of the strawberry smoothie I made. It consisted of ice, 3 cups frozen strawberries, a few bananas, 3 cups of baby spinach, 1 1/2 cups of orange juice, honey, 1/4 cup of gluten-free bran,& a 3Tablespoons of dairy free coconut milk yogurt (Willow loves the vanilla). Just the strawberries, banana, orange juice and spinach makes a wonderful smoothie! That is the actual recipe.

Link to Judah's Music Therapy Session 2/15/14

Liz is Tymme's mom. Tymme also has music therapy with Angie. Liz was there to help out. Judah had only met her once before, months ago, yet he still gave her a very warm welcome! He ran up to her & jumped into her arms, giving her a big hug!!


Wednesday, February 19, 2014

Get Behind Chad!

I'm reading this book called, "The Reason I Jump", written by a 13 year old with autism. Last night I read the part where she expresses her thoughts on being "normal". She conveyed clearly that she would not want to be anything other than autistic at this point. That's a hard one to wrap your mind around. She's only 13 - doesn't she want to do all of the stupid teenage things with all of the obnoxious teenage friends & have the teenage crush on boy bands & that guy in school that EVERYONE likes?? Actually, now that I think about it, she's a pretty smart kid. That teenage crap was not helpful at all. She explained her reasoning in the book. She writes a lot about hating herself too. Reading those parts makes me want to slam the book shut. As I read I ask myself if Judah does these things too, if Judah thinks these things too.. those parts are very, very hard to get through.

Angie sent over the video from Judah's session on Saturday. I'm excited to see it. I will post the link in here!

Judah was amazing today. The minute he awoke I saw progress. He was communicating better & fighting harder to do so. He was communicating things that he'd never communicated before. We got a package in the mail and I had him carry it in, which he did (usually he won't carry things in when I ask). He began to believe that the box was the race track we had talked about the night before Valentine's day. He kept saying "Ka chow!!", with big eyes, while holding the box up to me to open. He was sad when it turned out to be a gigantic pair of work shoes for Daddy. He looked over every inch of the box, then finally picked up the invoice, as if he were reading it, and said "Ka chow.." very sadly. That broke my heart into pieces. We've got to buy him a racetrack. I tried to get him to show me the racetrack he wanted. I gave him my phone & put it on, hoping he would show me. He knows how to get to the videos he likes. He either didn't understand or was showing me other things that he wanted. Every time I asked him if he wanted an item we were looking at, he would not respond. He was also trying to poop at the time, so that likely interfered a lot.

Scott and I watched a video on autism last night. We picked up a few ideas & some knowledge. It's frustrating when you hear other people talking about things they have done for their kid that everyone seemed to know was a necessary step.. and we had never even heard about it! It kills me. Our research has got to get better, hell it's got to get STARTED!

Sebastian had lunch with Papa at Dairy Queen today. He reported that he had 2 hot dogs with no bun and a Blizzard with whipped cream on top. Here's what Papa reported (hope it's okay that I post this Dave, I loved it!!)
Sebastain and I had a very nice extended lunch. He wanted to go to Dairy Queen (we hadn't been there in a long time). He had two hot dogs w/o buns, of course, milk, and mini-blizzard.That venue,close to school and home, was nice too, so we could have more face time outside the car.

He and I have not had much one on one time, so it was fun listening to him, interacting with him. He is, as we all know, amazingly analytical, cerebral and yet so ingenuously boyish all at the same time.

He entertianed me, in his own inimitable dramatic fashion for a long while (told me how he made his brain work so he became an accurate meterologist); through his repertoire of musical instruments that he can--with amazing accuracy--replicate vocally.

At dinner tonight Sebastian told Daddy that he had diary today. (diarrhea) haha. He feels fine.

I FINALLY got the video monitors hooked up in the van. The kids enjoyed watching an Elmo video today. Judah was so happy, imitating most of the words (he did this a lot today), singing the songs (he did this at other times today), smiling, pointing his finger on each hand and bouncing them on his thighs while the music played (Willow copied this). I turned around at one point & made eye contact with him & he laughed like I had never heard him laugh before. I'm sure it was about the movie. It was beautiful though, I'm so lucky I caught that.

Chilly day - couldn't play outside much. I wanted to take the kids to the Discovery Center today, but it never worked out. Crap kept happening! I spent nearly 2 hours dealing with the ant situation. I put down 6 ant traps (they are working). Last night I scrubbed the hallway bathroom. After seeing ants in there that day, I became bound & determined that these disgusting things were NOT going to take over our home!! I've still seen them throughout the day, but nowhere near as many & nowhere near as often.

Chad (Tim's best friend in Topeka) is a City Councilman in Topeka. I just noticed his post on FB: Just announced my plans to run a package of LGBT supportive ordinances for the City of Topeka Government. I’ll propose a domestic partnership registry, partner benefits for our employees and adding gender identity to our hiring policy. I look forward to full equality for all Topekans.

Now THAT takes balls. Topeka is home to Fred Phelps, we all know who that monster is. I lived in Topeka for a year. Children on the street carrying hateful, hugely offensive (to EVERYONE), graphic signs was sadly not uncommon. Children should not be LOOKING at those signs, let alone parading them around on a busy street corner, surrounded by adults who are brainwashing them. We all need to get behind Chad. Equal rights for all should have always been a reality. Having to fight for this in 2014 is about as insane as Fred Phelps.

Willow likes to dance on her chair at dinner time (she could be doing much worse, trust me). Tonight she said, "Look!!", then she stuck her butt out & moved it side to side with a huge smile on her face, oh boy.

First thing this morning I called to get Scott & I on the list for a Swindells parent training that is going to be happening in Salem next month. They are always in Portland. It's so nice that they are doing one here. It's an ASD training.

Judah pooped today & yesterday (not sure if I mentioned that one). This is awesome! Today was painful, fairly often throughout the day. And of course, nearing the end it always gets much worse. Add to that having to get ear drops twice today - he HATES that, and Mommy & Daddy draining his toe & treating it (obviously he hates that one even more). I wish we didn't have to put him through all of that. It seems as if he never gets a break.

Judah had one probiotic, vitamin d 2000, 7.5 mL L-carnatine, 1 dose of Miralax & ear drops twice today. We forgot the fish oil & are out of the folinic acid (I'm ordering that now, $50 a bottle!!!).

Tuesday, February 18, 2014

How To Sign a Non-Existant IFSP

We meet with our naturopathic doctor again in one month. This wait will be long for me, and hard. I'm still looking at cholesterol stories & comparing numbers.

Judah did great at speech therapy! He was speaking fairly clearly.. I heard "purple" and "airplane" spoken well. Usually it's just "plane". He was matching colors well (he's known how to do this for some time). He would say each color after she said it. He started his day imitating what others were saying. His teacher said, "Fabulous!" and Judah imitated "Fabulous!"

Rain & wind came at us hard today. The kids were excited about watching the stormy weather as we rode along in the van. We saw many trash cans on their side (Sebastian & I were trying to spot as many as we could) & even a fallen tree!

Sebastian told me a great story about his teacher stepping on a toy car, rolling away and landing in a container, breaking it. When the aide asked her if she was okay she said, "I'm TOTALLY okay!!" hahahaaa, which sounds just like her. She uses the word "absolutely" a lot too. Sebastian said none of the kids laughed. I was almost in tears listening to this story! Bad example Molly, bad example.

This morning I moved the cupcakes from the top of the toaster to the opposite counter, leaving them too close to the edge (never a good idea). I turned my back to start the toaster & suddenly heard a big splat and a little girl saying, "ooohhh sorry." Icing doesn't just wipe up, it takes quite a few paper towels! As I'm starting to clean up this mess Willow grabs an upside down cupcake from the floor and walks away, sticking her finger in the icing & licking it (as she always does with cupcakes). I had to take it from her. I felt so badly that half of the cupcakes they had made at Gramma's were now in the trash. I handed Willow the lid & let her have the icing that was on it. Sebastian, of course, quickly befriended her & shared in the pink icing. It wasn't a lot and Scott wasn't happy when Sebastian told him I had fed them icing first thing this morning. Again, bad example Molly, bad example.

We skyped Gramma for a while this afternoon. She has a view of the ocean from her vintage looking balcony. Sebastian asked her, "Are those San Diego trees?" when he saw the palm trees in the distance, haha. Pretty much!

Judah was back to being playful, energetic & talking more again! Thank goodness, some stress lifted from my mind. However, he went back to being quiet after Daddy treated his toe this evening. So I'm thinking the quiet, untypical behavior may be a result of something being wrong - which is how most people are, so it makes sense. Today was good though. I think the excitement of the crappy weather really cheered them all up! Willow was dancing, jumping & playing in the rain when we got home from school. It was hard to get her inside!! She was a wet dog.. because she always pretends to be a dog.. thankfully she didn't smell like one.

I asked Judah's teacher about signing the IFSP this morning. I had emailed the entire team in response to the notice of action document and IFSP document that she had emailed to all of us. In my email I asked how to go about signing the IFSP, but forgot to use the word IFSP. She wrote back (to everyone) saying the notice was already signed. I wrote again, just to her this time, telling her I was asking about the IFSP, not the notice of action. She never responded. I asked her about it this morning at drop-off. She told me that we had already signed the IFSP.. ?!?! I asked her how we could have signed it if it hadn't even been written yet! The current IFSP didn't even exist the last time we signed anything for them! She said the paper we signed at the meeting would be the signature paper for the IFSP (which was written days after the meeting). This was never spoken or made clear to us at the meeting. Man, the ONE time we didn't record a meeting! Anyway, luckily we are fine with the IFSP. She did a great job on it. But it was very unnerving to find out that we had unknowingly signed an IFSP approval (an EXTREMELY important paper), especially given that we did this in front of our "team", after we had been told (by our team) that this paper was something that did not sound at all like an IFSP approval. Scott was beyond irritated too. We thought they were emailing the IFSP so we could look over it & then sign it if we were okay with it... which is what should have been happening.

Judah was in pain throughout the day, it got much worse this evening. He finally pooped in his diaper around dinner time, it was small, which is unusual for him, especially given how much he was trying to go! He took all of the usual supplements - L-carnatine 7.5 mL, one probiotic, vitamin d 2000 i.u., two folinic acid w/b-12 & fish oil. He also had his ear drops twice & we cleaned his ingrown toenail twice, putting on Neosporin and a Band-Aid when we were done. This toe issue was noticed last night. This morning it was red & beginning to drain. He screams when we clean it but walks as if it doesn't hurt. He has been telling me once or twice a day that his ear hurts (the infected one). I'm surprised since we have been giving him ear drops.

Monday, February 17, 2014

Low Cholesterol?

Papa stopped by this morning. The kids were ecstatic about his surprise visit! Judah was very upset when Papa left to get things from his car. I'm assuming that meant he didn't understand what was happening. I held him up so he could look out the window, once Papa was headed back in Judah quickly wiped his tears so Papa would not see. But then Papa tried to leave again - this time to actually leave. Judah was clinging & very upset, which continued on for a bit after Papa left. I wish I knew exactly what was going through Judah's mind. I wish I could reassure him. Sometimes when Gramma & Papa leave he freaks out, sometimes he doesn't seem to care & sometimes he waves goodbye & smiles.

The kids played outside for a while - it was a nice day. Judah rolled down the driveway backwards on the Krazy Kar and accidentally ran into the back of the van. After that he wouldn't touch the Krazy Kar. Physically he seems fine, but he was a bit shocked right after it happened. Sebastian put the sled on top of his scooter & was able to get it going, waving the back of the sled side-to-side, which is how the scooter works. One more invention that works!

After the outside play Judah was not energetic or playful like usual. All he wanted to do was watch SpongeBob. Eventually I turned it off, he would get upset & turn it back on. This went on for quite a while. Something wasn't right. Scott noticed that Judah's big toe was red & swollen. Judah had been wearing shoes all day, so I had not seen this. Scott thinks it's an ingrown toenail. I don't know what an ingrown toenail looks like, but Scott has had experience with this. Scott wants to wait & see if it gets better, but I've decided to call the doctor tomorrow to make sure he doesn't need to be seen.

Judah's labs came back from the naturopath doctor. It looks like his cholesterol is low & triglycerides are high. If any of you know about this stuff, I am happy to send the informative parts of the labs your way to get your take on them. I have copied and pasted the important parts for a peds nurse friend of mine. I'm waiting to hear back. She asked why they would even be checking a kids cholesterol (apparently it's not routine?) & seemed to think if anything it would be high, not low. The doctor's office emailed us the labs this afternoon & said to call. Scott left a message. Hoping to hear back soon. Of course though, I immediately Googled. And the first link I came across was really interesting.. see below.

Judah had usual supplements - 1/2 tsp fish oil (spit other half out), 1 Culterelle probiotic, 2 folinic acid w/b-12, vitamin d 2000 i.u., 7.5mL L-Carnitine. Took ear drops twice - Oflaxin OTC 0.3%, & used Debrox (earwax removal) one time. He kept underwear dry while he had it on. He was noticeably uncomfortable when he needed to use the restroom. Every time I took him to the bathroom today he fought the whole way there, but once we were in he went with no problem.

Sunday, February 16, 2014

Oreos For Mommy

Judah is quiet lately. I'm not sure what is going on. I'm having a hard time getting him to answer questions, but I am pretty sure he just doesn't know how to respond. I'm reading a book called, "The Reason I Jump", which has given me some insight into this issue. It's so depressing. He seems to be understanding directions well though. He pooped again today - that's 2 days in a row! Both in diaper but pain only lasted for a couple hours or so today & wasn't horrible (it would come and go). Cleaning up was awful though - that required carrying him, holding him in a certain position as not allow poop to spill on the floor & putting him in the bathtub.

The boys went to the park with Daddy while I spent an hour trying to get Willow down. No luck. The park was muddy but fun. I told Scott to do what he had to to keep the van clean. The boys came home wearing only their shirts & underwear/diaper. Sebastian ran inside singing, "I'm in my underwear!!!" hahahaa. Kudos to Scott, job well done! He even took off his own pants! 

Just kidding about the last one. ;)

Sebastian & I made a "rain boots shelf" on the bookshelf that he organized recently. The third shelf was barren. Rain boots seemed like a logical plan. After all, we do live in Oregon. Rain boots are a necessity here and used often. Now we won't be tripping over rain boots in the laundry room anymore!

Judah took 2 baths today. One after the poop explosion (he initiated this bath) and one after I had just finished washing dirty rain boots in the bath tub. With the 2nd bath he started undressing as soon as he saw me running bath water. I was still cleaning the boots, but the minute I was done he took his remaining clothes off & got in.. and stayed in until I started the bath. Anytime I am doing anything bath tub related he wants to take a bath! He loves baths!! There was no warm water left since I had just used it all on the boots. So we had to wait on the water, which he didn't seem to understand. Singing the "3 Green Speckled Frogs" song to him using the rubber ducks distracted him & peaked his interest. He had only wanted his boat in the tub.. but after the song he was playing with the ducks saying "quack, quack". Nobody ever plays with those things!

Judah rammed my cheek with his head tonight, twice, really hard. The second time was pretty soon after I had told him to stop, showing him that I was hurt. He didn't seem hurt at all, but I was honestly expecting my face to be bruised! I know that feels good to him, but ramming someone's face is pretty serious. Obviously we need to work on that. He hardly gets any school time as it is. We don't want them to kick him out for head butting! haha (nervous laughter)

Scott said Willow demanded to walk when they were grocery shopping this evening, so he let her. She threw random items into the cart from time to time, mostly sweets. He said she kept trying to put cookies in the shopping cart. He kept taking them out & putting them back on the shelf. Finally she grabbed a package of Oreos, looked up at him very seriously and said, "for Mommy". When Scott told her "no" again she said, "But Mommy.." with a sad face. She is good. Unfortunately she still didn't get the cookies, I'm surprised about that.

Judah got 3mL L-carnatine (2nd dose missed), 1 tsp fish oil, 1 probiotic, 2000 iu vitamin d, 2 folinic acid with b-12, ear drops & ear wax cleaner

Saturday, February 15, 2014

Willow's First Haircut!

The lady who gives haircuts to Mom, Dave & Sebastian stopped by this morning to chop off many Judah curls & give Willow her first haircut. Her first haircut was a kitchen haircut. :) Judah did incredibly well. Towards the end he got antsy but she was able to give him a full haircut! Willow was still, holding her half eaten box of raisins & looking very serious. She had absolutely no problem with a stranger holding scissors to her head for the first time (I hope). She looks like a new little girl with her soft chin length hair, even all around with random curls & waves near the bottom. No bangs, just like her mommy.

Judah's music therapy was a little different today. Angie videotaped the session. The grandma to one of the kids Angie sees was there to help out today. She was modeling what I could do with Judah during the session. She was holding him most of the session. It was pretty fun. Judah was saying new words, repeating what he heard & choosing his own. He hit the drum exactly at the right second to stop, every time. During that same moment he shouted "Stop!" with everyone else. He loves the "Three Green & Speckled Frogs" song. He loves the drums too. Angie read a book called "Peanut Butter & Jelly". This book turned out to be a song that I used to sing as a kid! I had completely forgotten about that song! We used sticks to do the Peanut Butter & Jelly part - he picked up on that pretty well. We need to get him that book, he loved it!

During part of the session Judah suddenly de-energized. I thought maybe he was just bored with Old McDonald, but he may have been having tummy pain. As soon as we got home it was evident by his random moaning that his stomach hurt. Most of the session he was super energetic, mainly focused & interacting a lot of the time. I'm excited to see the video. When Liz (the grandma) walked in, Judah ran up & gave her a big hug! As if he'd known her for years! haha. In reality he had only met her once, at a group session months ago & wouldn't know her if he passed her on the street. He was beyond comfortable with her squeezing & holding him throughout the session. And she was able to keep him contained for the most part, which is very difficult for me to accomplish.

We'll practice the video at home. Hopefully that reinforcement will bring even more benefit & progress to his sessions. Angie said it should be up by tomorrow. If so I will send you all a link (or post in here).

We came home - Judah didn't eat much. Mom & Dave came over (they had picked up Willow & Bash earlier) and swooped Judah away for the rest of their adventure. Baja Fresh, the mall (Willow got new Dora shoes! Bash got new coins!) and home for some Valentine's Day fun. They came home with pink cupcakes. :)

Scott & I went to see the Hunger Games part two. Woody Harrelson is still a drunk, but the victors look up to him for some unknown reason. He suddenly becomes seemingly sober & useful near the end. He even begins to care about others & his brain kicks on! The lady with the big hair & awkward dresses also begins to care about others, even shedding tears. Pita (the winner who was a previous baker - named after pita bread??) is suddenly a heartthrob to fans, his dorkiness has miraculously vanished and a serious, tough guy appears. Katness still doesn't smile, but she does stop hanging out in trees all of the time. She climbs to the top of a very large tree with ease at one point in the movie. None of the other players seem even slightly surprised by her sudden ability to scale the towering landscape. She is extremely bothered by her little sister giving an injection, spontaneously requests to marry someone she doesn't like & believes running off into the forest with her boyfriend will save them but only considers it once throughout the entire movie. She requests to become allies with a non-verbal old lady who's skill is making fish hooks over a very long amount of time. Given all this nonsense, she still can't even bear a smile. The ending is awful - basically a "let's wrap this sh** up" ending. It was a long movie with not enough forest time & too many things that made no sense.. the entire point of the movie made no sense. I recommend it if you have thrown out your back & can't reach the remote and it begins to play on your television.. and you aren't able to go back to sleep.

Judah supplements - Today he took all of the usual plus one dose of Miralax. The usual being fish oil, 2 doses of folinic acid, a probiotic, vitamin D 2000 and 7.5 mL L-carnatine. We did his eardrops twice Oflaxin OTC 0.3%. We also did the Debrox (earwax removal) twice. He had a large bowel movement (in diaper) at Gramma & Papa's. He kept a dry diaper over there & pottied for them.