Tuesday, April 1, 2014

BIG NEWS! We're Moving To Florida!!

April Fool's!!!  : Þ

Yesterday in class the instructor told us that she knew a woman who wanted her daughter to speak so badly that she decided she was only going to cuss around her. Why? Because ALL kids repeat that!! True story. Much to the woman's surprise, her non-verbal daughter did not begin to cuss like a sailor. Unfortunately her daughter's first word would not be sh*t. I don't know what happened after that..

Judah came home with green stuff in his hair. Sebastian came home with a note stapled to his wrist - that's what the teachers do when they have important notes to send home. His snack day will be the 22nd - if I remember right.

Willow & I went to Re-runs this morning while the boys were in school, to see if there was any kid treasure to be found on dollar day. Many times on dollar day (first day of the month), I have walked out of there with a paper grocery bag full of kid clothes. If your items fill a bag, then you get that bag for $15. It's a great deal. And with 3 kids, it's not hard to fill a bag. Sometimes I even find shoes, books and toys too! Unfortunately it's only every 2 or 3 months that I remember dollar day is happening. Today the dollar supply was very low. I wasn't even able to fill a bag. While waiting in line, Willow & I decided to check out the toy room. We always end up in there. She spotted 17 things she wanted to buy. Thankfully she wasn't clinging to anything today. Although she refused to take off the flip-flops with heels, covered in butterflies that lit up when she walked for quite a while! In the playroom I spotted a 3 bin storage cart with wheels that looked practically new. So we were able to come up with one good find! We also left with 5 pieces of kid clothing.

Gramma & Dave took care of Willow & Sebastian while Scott & I took Judah to a pediatric developmental specialist at Providence hospital in Portland. He was really good, highly informative & straight forward. He explained Judah's original diagnosis results in a way that we had wanted & asked for from the absolute very beginning. At this point I didn't think any professional was ever going to tell us where Judah fit into the world of autism in a matter-of-fact, black & white sort of way. I figured that was just never going to happen. People want to comfort you & give you hope! They don't want to give you a number or hand you a brutally honest professional opinion of where your kid is at developmentally, unless it's good news. If it's good news, then every professional you meet will openly talk about it. They'll probably talk about it a LOT. This doctor was the very first person to ever ask us if we thought the results were accurate, and if we thought the diagnosis was correct. We let him know that the results came from an environment that was not natural, not comfortable & basically forced upon Judah. Of course there weren't accurate. There's no way they could have been precise. But we still wanted to hear the opinions & thoughts of the professionals who assessed him. We should have been given a time to talk with them after the results were shared with us. As far as Judah's diagnosis, I told him that it is a label. We don't mind the label because the label gets you help, it gets you disability, it gets you specialized preschool.. without the label things would be even harder. I told him that we want Judah to get the help he needs to progress. That's all that matters.

So now we had been handed real information from perspectives of many professionals who had seen Judah - this doctor had read all of the past notes & assessments on him, which obviously should have been shared with us, the people who created Judah, long ago.

The doctor assessed Judah and explained the results he got from those assessments. Summaries of those will be mailed to us since his assistant had left for the day. So anyway, that was more real information & more current information, followed by an opportunity for us to ask many questions. It was a good visit. We will go back to see him in 6 months, or sooner if we feel that we need to. He gave us his email & told us to email if we have any questions.

He believes MRI & EEG are not necessary at this time. If we are questioning any seizure activity then he would recommend EEG. MRI is necessary if Judah's head had a big jump in growth in the past or does in the future. He was at the very top of the normal head measurement apparently.

Judah did very well on the testing, although he seemed quite bored & didn't want to be there. He didn't tantrum, but it was pretty clear that he would rather be elsewhere. He was given a box of toys when we walked into the office. There were trains included in the toys, but no tracks. He requested train tracks repeatedly and began to get upset. Eventually I asked the doctor if we could get some train tracks from the lobby. He retrieved train tracks for Judah. If we had not gotten them the visit would have been much different. And it was only fair to Judah.. If you give him the cereal, you need to give him the milk too!

The doctor had Judah put big wooden shapes into the correct spots. Judah did this effortlessly, even naming triangle & square clearly & correctly. He put pegs in a board for him, sat patiently through the physical exam, followed directions to "come here" and "sit down", responded to his name, made eye contact. When the doctor tried to engage Judah while Judah was playing trains the progress became much different. Judah ignored him - the doctor's activities did not look fun to him. I told him that if the train tracks disappeared he would get much different results. Which you would think he would know?? He asked Judah to clean up. Judah cleaned up, even helping to put all of the train tracks & trains away with absolutely no refusal. Then Judah participated in the doctor's activities completely.. after all, what the heck else was he going to do??

The doc says Judah has weak upper body tone. No one has ever told us that before. OHSU also noted that on their assessments in the very beginning - but surprisingly enough, we were not told. This is something that is typically worked on through OT.

The most entertaining part of the visit was when Scott brought up the GI. Judah was already starting to walk around funny. The GI talk continued & I told the doctor that Judah needed to poop. (but what the heck were we going to do??) I guess I was just preparing him, haha. We talked about constipation, about enemas.. and on & on. It's a big issue with Judah. Wouldn't you know it, maybe 7 minutes into the poop talk.. along came the poop, 2 different times. The doctor gave Judah a funny look when the pooping started - he didn't know what was happening. Small office, completely enclosed.. when Judah poops in the play room, which has no doors, the stink fills up the entire area. It was hard for me not to laugh as we talked about poop in a room where all you could smell was poop.. as a little boy stood 2 feet in front of you.. pooping. hahaa.

Willow was asleep when she got home. Sebastian told us stories about bike shopping. Apparently he has 2 bikes picked out & will be getting one tomorrow! Gramma & Papa said he is a good fit for a 16 inch. Sebastian is elated!

Judah had 1 tablespoon (one dose) of the doctor prescribed L-carnitine. He had 2 doses of Docusate Sodium, 2000 i.u. vitamin d, three tablets 125 mg folinic acid with b-12, one probiotic, one fish oil and 2 doses of Miralax. He also took Restless Night Sleep pill again (1 pill). We were only able to do the nose drops once (missed 2 doses). He pooped twice. Last night he only woke up ONE TIME. Scott laid him back in bed, Judah went right to sleep & even slept in!

No comments:

Post a Comment