Can you stand MORE good news?

What can I say, other than that one little blip the other day, things continue being fabulous around here. On Friday I got a letter I never thought I'd receive. Actually make that two letters, one of which nearly had me in tears. What are these emotional bits of news you ask? Well, I must use caps because this must be shouted LITTLE MAN MADE HONOR ROLL FOR THE FIRST SEMESTER OF THIS YEAR!!! And the second? Beans made Honor Roll too!!! Now I am incredibly proud of Beans, he's worked so hard and come so far. For Little Man though, this was a day I didn't think would ever come. Now granted, his work is on Little Man-level, not grade level but who cares? He's doing it, he's learning and that's plenty for me to celebrate. We had a special dinner last night and they both got to stay up late while we played games to celebrate. My eyes still fill with tears (the happy kind) every time I think of it. He's making it! He's really, really making it!

To follow that news, it's hard to think of anything better, but this just might be it. I spoke with Little Man's teacher today (yes, Saturday). She said his behavior is practically perfect (hear that teachers from last year? Yes, PERFECT.) So great in fact that very soon, as in this week, he's going to start integrating into a mainstream class. The timing for this is quite a coincidence. The parapro who has been in his class since the beginning of the year got her own 4th grade classroom when school resumed after Christmas. One of my fears with mainstream is of a repeat of last year which was frankly HELL. He cannot cope with that again period. So, even though technically he's in third grade round two, he will be going into the class of the parapro-now-teacher who he adores. They'll start slow and work up. The goals are not academic, but merely functional. Learning to sit in a class, follow directions, cope with the noise and activity of the other students, and such. I'll admit I still have some unsure feelings, but if ever the right opportunity came along, this is it. He's worked so hard and he surely deserves it!

Lastly, on the medical side, Little Man is completely over his reaction to the Periactin. His behavior Monday was definitely an adverse reaction to that med and he's been back to his loving, sweet self ever since. Tonight I had to take him to the doctor for a really bad ear ache that went into his head. Turns out he has bacterial pharyngitis. Would have been helpful if he'd mentioned his throat hurt lol. It still amazes me that he can say anything, yet doesn't communicate things that are important. Oh well, a couple days on antibiotics and he'll be back at school Tuesday, just in time for me to take my first physiology test of the semester. Isn't he just perfect with the timing this year? Such a sweet little boy to even get sick on schedule. ;)

What do you mean, I can't do it all?

After way too long without health insurance (for me, the kids can't go a day without coverage :P), I was finally able to visit a primary care doctor today for the first time in years. Finding a doctor in this area taking new patients with my insurance was like finding a needle in a hay stack. I called many places and finally stumbled upon Dr. O. All I can say is maybe it was just meant to be that I found him. He is so kind and compassionate...and...a few years back when he first emigrated here from Nigeria, he worked as a CNA for an agency with special needs children. One of his clients was, in fact, an autistic boy. OMG, does he honestly understand?

Without going into too many personal details, since after all this blog is mostly about my little ones, he begged me to get Little Man's overnight nursing shift filled. He was glad I have four hours a day currently, but he said that between the two boys I just can't keep this pace up. My body is going to start making it's unhappiness known and it won't be in a small way. What?? I'm superwoman! I can do it all, alone, with no sleep. I have for years. Oh wait...you mean that's the problem?

So that got me thinking, exactly what do I do in a day? Let's take tomorrow for example.

• 6:30-7:00 am Get Little Man up, get him showered, teeth brushed, hair brushed, and dressed. Yes, he's 10 but these all must be constantly supervised and directed. While I'm getting Little Man ready, Beans usually plays or gets himself dressed.
• 7:00-7:30 am Give Little Man his meds, make sure he has his backpack ready, shoes and glasses on, jacket if needed, write any notes to his teacher and wait outside for the bus with him.
• 7:30 -7:45 am Get Little Man on the bus, give Beans his meds and make sure he's dressed, and has brushed his hair and teeth.
• 7:45 am Prepare Beans formula, gather his tube feeding supplies and feed him his 300 cc bolus.
• 8:00 am Beans gets his shoes on while I check his backpack and write any notes.
  
• 8:15 am Beans leaves on the van.
• 8:15 - 9:00 am I shower, get dressed and do all my morning stuff.
• 9:00 - 10:00 am Here's when I make my miscellaneous phone calls and take care of business stuff for the kids - tomorrow this includes calling Little Man's developmental ped, Beans' GI, Beans' Home Health and Little Man's CMS nurse.
• 10:00 - 3:00 pm I'm at school
• 3:00 - 3:30 pm Check emails and communications for my online classes
• 3:30 - 4:00 pm Beans gets home, we go over anything he brought home, talk about his day and spend a few minutes together.
• 4:00 - 4:30 pm Little Man gets home, we go over his daily sheet. I usually get him a snack and he starts an activity like the computer or something.
• 4:30 - 5:30 pm Little Man's nurse takes care of him while I work on my online classes, at 5:00 I give Beans another 300 cc bolus.
  
• 5:30 - 6:30 pm I cook dinner, we eat, I clean up
• 6:30 - 7:00 pm More school work for me
• 7:00 pm Give the kids their meds. Little Man's nurse gets him bathed, teeth brushed and pjs on. Beans will read a story with me, take his shower, then put his pjs on.
• 8:00 pm Kids go to bed. I give Beans another bolus then get back to homework while Little Man's nurse makes sure they go to sleep.
• 9:00 pm The nurse leaves
• 9:00 - 1:00 am Online classwork, with a pause for another feeding for Beans at 11
  
• Sometime after that I try to get sleep between the night wakings of both kids
  

And somewhere in all that I try to fit in the housework and some sort of fun for the little guys. We have a busy life, but I thought I had a grasp on things. Lol. It's okay, once I have my degree and a nice job maybe I can hire some help for those things I just don't have time for now...or maybe I'll lose my mind. ;)

Anyways, while I was at the doctor the kids stayed at our friends' house. My friend, M, had today off and Little Man loves to play with her daughter T. M was so kind to take the position of first non-professional, non-family to watch both my kids. Wow! What a brave woman! Apparently the kids had the best time together and M survived, in fact she actually looked calm when I got back to pick them up. 8-0 She and I chatted for a while...and that's where I wish I could leave off for tonight...but since this is about the adventures and MISadventures, here you go...

When it was time to leave Little Man turned into a monster! He has not been like this in at least 9 months! After a couple warnings and explaining while he was calm, he went into T's room and pretended to be asleep, hiding under her desk. Skipping some details here, but I ended up having to drag him out of the house (quite literally, he's 94 pounds now, no way I can carry him) cause he refused to get up. When we got to the door he magically awoke (yeah right) and the real fun started. I have claw marks down my arm, was punched several times, he cussed me out in front of my friend and T's little brother, and was impossible to get into the car. Thankfully Beans took his shoes and jacket and waited in the car for us. I have no idea how long I struggled with him, but it was horrible. Horrible's not even the word for it. The only thing he'd calm down for was when sweet T came up and gave him a hug and told him it was okay. That was incredibly precious.

I finally got him in the car, he locked the doors so I couldn't get in. I had the keys so I waited for him to stop hitting the lock doors button and hopped in. He popped right out his door. I was so ready to cry and steaming mad at this point. Finally, finally I got him in the car and we made it home. I gave him an emergency dose of his Klonopin and he was back like nothing had even happened. He apologized many times, but geez....

I'm pretty sure the cause of this sudden aggression issue is the recently added Periactin to prevent his migraines. It's mainly an antihistamine and he reacted similarly to Claritin and Zyrtec when he was younger. Even now if he has more than one dose of Benadryl within a couple day span he starts having these issues. So tomorrow I'm calling the doctor and pleading with her for something else to prevent his headaches. In the meantime, he's not having one more dose of this one. He is too big for me to handle when he's like that now. I was seriously on the verge of having to call 911 for help.

But, all that's history now. He's back to his calm self this evening and did well at his guitar lesson. Hopefully he behaves for his teacher tomorrow and his doctor can find something else to help him. I never said our life was boring. ;)

Nothing but the Best!

Today I come to report the best news! So many great things have been happening around here. Today Little Man had his best psychiatry appointment EVER! I got to report how fabulous he's doing. NO aggression. NO time outs, let alone restraints or principal visits at school this year. One A and the rest B's on his last report card. NO issues at home, other than a stinker of a little brother, but that's none of his doing. ;) The psychiatrist and developmental pediatrician (they see him together) were so very impressed. The change in him is so remarkable. My Little Man that was gone for so long has come back. I've fallen in love all over again. I can't tell you what a breathtaking feeling it is to have felt like you had almost lost your son to his frantic behaviors, his inability and unwillingness to connect, and him living exclusively in his own world...and then, one day, have the dream happen...and even better. He's now the sweet, kind, caring little boy he was so long ago and more. He can communicate now, he's learning to read facial expressions, he can control his frustrations.

As for meds, we're leaving his doses the same as he's been on the last few months. He's doing so great, we want him to continue that. When I talked to them about his horrible headaches, we got more great news! They are putting him on a daily preventative as well as giving him a rescue med to take as soon as he feels one coming on. They confirmed that they're pretty positive these are migraines, we've tried the ibuprofen and it's been pretty useless, so now we get to do something to help. We were both relieved to have that.

He's gotten to be a little on the hefty side as a side effect from a couple of his meds, which I was concerned about, but he's not toooo big yet and having him able to function, learn and be stable is the most important thing so we're just keeping an eye on it for now.

At the end of the appointment, the developmental pediatrician came up close and asked me if we were close, about the same or worse where we were at when we lived in Utah. The answer is LIGHT YEARS AHEAD! He has a new peace about him that I can't put into words. He's more connected than he's ever been. He's learning, participating, and looking forward to school. HE HAS FRIENDS!

Speaking of friends, another best moment happened about a week ago. For the first time ever, Little Man received a phone call at home from his friend. Not only did he get the call, he talked just like any other 10-year-old would. It brought so much happiness to me, I was ready to cry all over again. Friends! My Little Man has friends!

Finally, but certainly not least, I am happy to announce that Beans has made the A/B Honor Roll AGAIN! He also earned a Citizenship Award for last quarter. He is thriving in every way. He too has friends! He's doing so well in school that I think we may even get rid of the IEP and switch to just a 504 in May at his next IEP meeting! (This means removing all special ed functions and just having health support in place!) He loves eating lunch with his friends at school, and the cafeteria ladies specially prepare his food for him. They put his aside so it doesn't get contaminated with foods he's allergic to and give him some extras if there aren't enough safe foods on the regular menu.

What can I say, 2010 is off to a fabulous start!!!

Sleep Study Update from ENT Appointment Today

Well, now I know for sure, Little Man and Beans should play the lottery. ;) They'd be winners for sure. Now let me explain...

I blogged before about the nurse's summary of the boys' sleep studies. I went in today figuring I knew what to expect. Hahaha. Every time I go in thinking this I come in reminding myself never to do it again. It wasn't bad news per se, just complicated. What's new right?

We discussed Little Man first. The nurse had told me that his sleep issues weren't caused by apnea. Apparently that was wrong. Quite wrong. Little Man's body has learned to deal with the apnea. He rarely goes into slow wave sleep or REM sleep because as soon as he does he obstructs, stops breathing and desats (oxygen levels drop). He does wake up around 10 times/hour that wasn't directly related to respiratory events. That could be neurological or could be his body trying to avoid the apnea. The ENT said he's partially obstructing quite frequently. He had a technical name for it but I can't remember it right now. It's also possible/probable that his hypotonia contributes to the apnea. The muscle tone when you're asleep is what holds your jaw in place and keeps your airway from collapsing. When the tone is low like his, the jaw can drop back and the airway collapses in on itself. Obviously a problem.

Next we went over Beans' results. He also is having obstructive sleep apnea, though he doesn't drop his oxygen levels as low as Little Man. He does have numerous arousals and awakenings through the night and his incidence of apnea increases greatly when he's in REM sleep. It's possible/probable that his dysphagia (swallowing difficulties) and/or subglottic stenosis (narrow airway) contribute to his apnea.

Both boys have normal size lower jaws but their submucus palates are long or too far back (can't remember exactly what he said here). In 99% of kids who have sleep apnea it resolves when they have their tonsils and adenoids out. Both boys had theirs out years ago so they get to fall in that lucky 1% that doesn't (hence the lottery comment). They love to be in that tiny fraction I'm convinced.

So what's the plan? Well we're starting with one month of nasal steroids to eliminate any congestion/inflammation that could be contributing. Then another ENT appointment. If things aren't better then they'll have x-rays to check on their adenoids. Apparently they can regrow. If they have, they'll be removed. If they haven't then the boys will be referred to an oral surgeon. I'm not sure exactly what we're looking at in that case, but I'm hoping that these results and follow ups let all of us get some good sleep. Can you imagine if you never, ever had a good nights sleep? If every night you woke numerous times in the night? If your brain had learned not to go into deep sleep to keep you breathing? No wonder they tend to be crabby little men. Here's to a happier, better sleeping 2010!!

Happy New Year!

The kids are back at school today so I finally have a chance to update the blog. We've had a wonderful couple of weeks. We all had a great Christmas. We went to Grandma J and Grandpa R's house for Christmas Eve where we enjoyed spending time together and the boys were given their traditional gift of pajamas. It was so special to me to see the grandparents continuing traditions with my kids that were so fun when I was little.

Christmas morning we went back over to spend the day and open presents. I am so thankful for everything people did for us this Christmas. It was going to be a really scarce day around here, with me putting everything into my education and our future, but we were so blessed by people who were so kind and generous. It turned out to be a wonderful day. We ended Christmas night with a roaring game of Monopoly. Grandpa, Grandma, Little Man, Beans and I had a great time making side deals...or trying to convince each other to take our side deals...Little Man ended up stomping on everyone. What a great time!

New Year's Eve we went back over to celebrate. Another great time was to be had. We rang in the new year a few hours early with another exciting board game. This time is was Clue. Let's just say Little Man should stick with Monopoly. :P And Beans too for that matter. Little Man couldn't help but blurt out "I have that one!" when someone would make a guess, even if it wasn't his turn. Beans on the other hand giggled endlessly when someone proposed something he had.
One thing became quite obvious in our board game playing. Little Man needs a course in counting squares lol. Every time he'd roll the dice and start to move he'd skip numbers, hop his pawn in random spots in a line around the board, and pretty much ignore the lines between spaces. Who knew you needed a course in square counting? His creative counting did not, however, contribute to his grand Monopoly stomping of the rest of us. We just counted his moves out with him. :)

On Saturday, January 2nd, we had our first playdate of the new year. Again I'm not sure whether the kids had more fun or if I did. We've gotten to be good friends with the M family. Little Man and their daughter, T, have gotten to be friends - real friends. Little Man has been good at playing with kids on the playground for a while now, but I think T is his first friend his really developed a relationship with. They play, they tattle on each other, they kinda of fight then they play, tattle, play, tattle and they're learning how to work things out together. I <3 seeing them together. Each time they meet they run to each other and hug. The excitement of getting together hasn't grown old yet.

The afternoon was spent jumping on the tramp...

tackles and hugs on the tramp...
and super exciting go cart rides. Little Man wanted to drive but given that he still will ride his bike directly into a tree I didn't feel it was a good idea to put him behind the wheel of something with an engine. Here he is with Mr. M. Mr. M was such a good sport and actually let Little Man drive while T and Beans were on the cart and Mr. M was pushing the cart around himself - no engine. What a dad!
Beans looks a little apprehensive here, but believe me, he wasn't in the least. No more fear in this little boy. A, T's little brother, is in the middle here. He turned 4 on the day of our visit.
Late in our visit Little Man was having a rough time with me denying him the privilege of driving the go-cart. A little after that he started crying for his cousin J who he hasn't seen in a year. Little Man has always adored J. T's brother A looks much like J and I guess that was a bit too much for Little Man. He started crying because he missed him. What a sweetheart. He did pull it together in time to have one last ride in the go-cart before we left though. :)

On the medical front, things are picking up again. Just before Christmas, Beans' ENT called with his sleep study results. He's struggling with obstructive sleep apnea. The typical treatment is removing tonsils and adenoids. His were removed when he was 2. We go in for a follow up on Monday to discuss where we go from here and also to follow up on Little Man's abnormal sleep study. Once again the boys have something with similar presentations yet very different causes. I think they just like to keep me on my toes. I also need to get Little Man back into his therapies. That alone is a full time job. He's supposed to be getting OT, PT, ST and behavioral therapy each week but there just aren't enough hours in the day so we have to pick and choose. I also need to get him in for new orthotics as his left ankle is collapsing in more and more. Oh yeah, and I need to get Beans in for an appointment with his GI in Orlando. Little Man has a psychiatry appointment a week from Friday as well. Just a little busy around here. ;)

My new semester starts tomorrow and I'm very excited. It will be a busy one with a 14 hour course load including anatomy and physiology which will be the big one. I'm taking all but A&P and A&P Lab online in hopes of making enough time to fit in all the doctor appointments and therapies for the boys. If anyone's seen a few extra hours in the day though, I'd be happy to share them with you. :D