Wednesday, August 31, 2011

Finding Asa's voice

I didn't realize the link didn't take! So sorry, try this....

I'm trying to get used to this tablet and blogging on it.

Asa went to school today. I tried to tell his teachers that he was pretty crabby. Sure enough when I picked him up he was in a mood! I think he did OK most if the day. Its just that when the teachers and therapist have a plan and goals he usually doesn't want to go along with it! Imagine that! The teacher said that while Asa wouldn't work for the PT, he did the same work with another person in the room. Leave it to him to not follow the game plan!

He has been scheduled to work with a person (I forgot the title) who will recommend a type of communicator for him. That work started today. My understanding is that they will try several types of things and see what works best for Asa.They'll then try to get insurance to pay for my boy a voice. That's what I walked in on today. A therapist was wanting him to work the cause and effect game on the computer with a switch button. And while this is normally an activity he likes to do its a whole different story when someone wants him to do it!

Right now we use PECS (Picture Exchange Communication System) cards. I have Asa's cards on pieces of contertop samples, tied together with a zip tie that I can then clip onto his wheelchair or carry with us. Asa really likes the tiles and cards and mostly we use then by us showing him the thing he has chosen. For instance, if he is coloring I'll get the card with the crayons on it and talk about how he is choosing crayons. But just this week Asa sorted out 3 cards and handed them out to me. I mumbled something in response but he stuck them out to me again. The kicker came when he stuck them out to me again and signed "please". It was only after he signed that I saw he was handing me the "cookie" card!!!! Of course I jumped up and found him a cookie, well a pop tart but that's the closest thing to a cookie that he can eat. Later I did find a WhoNu? Oreo cookie and broke it up for him. I think he'd just soon have the softer pop tart over the messy Oreo. On a side note, have out tried these WhoNu? Cookies. They are supposed to be healthy but taste like a real cookie. I think they are pretty good. I won't buy the Oreo again but the chocolate chip are good. Anyway, here's a pic of the PECS cards Asa handed me!

I've also been using my iPhone as a communicator for him too. My favorite app is the Answers:YesNo by Simplified Touch. Its a basic 2 button screen so he can make choices. At first the app only did Yes or No. On an update though I started being able to program the 2 choices. He really stared to understand this app when I programed "Pop tart" and "Pedisure" as his choices. When he picked "Pedisure" he got the cup if Pedisure instead of the Pop tart that he really wanted! He still isn't great at the choices because he really likes to just tap, tap, tap!

A more involved app is TapToTalk. You can add your own albums and pictures but so far we just use the basic free ones. I use this often when Asa is having a meltdown. I can go to the emotion page, choose the frustrated face, and then "I want to relax" button. Then we lay down on the couch while he pokes my ears until he calm and ready to face the world again. We also use the drink choices. I tap the milk or juice choices and Asa will hit the soda button a million times in a row!

I also use TapToTalk on the tablet and that was a biggie in deciding to get the tablet. Sadly the android market doesn't have any of the other apps or anything similar.

I've also toyed around with MyTalk and like certain things about it. Its very easy to take a pic of the object and use the app right away. Again I haven't really tried to change the settings though so I can't verify the ease of use overall.

All of these apps are cheap, cause that's how I roll! In fact I think the yes/no was. 99 and the other two are the free versions. These programs can be very expensive but if the freebies work then I'll use it!!!

I'm not sure what the school will decide. And don't really care as long as he is able it tell us his needs and wants. At some point it'd be great to carry on full conversations but right now we just need the needs and wants! I wish he'd pick up signing more easily. There is no equipment or programs to load or buy or carry around. Today he actually signed "I love you" to the dog! Complete with the point to the dog!! Even when he signs it to us, we don't get the point, just the "love"! My deepest hope is that I'll hear his sweet little voice saying Moma or Daddy!!! Until then we'll keep on trying to find the best way for him to share his ideas and thoughts with us!

Tuesday, August 30, 2011

As predicted.....

Asa came down with Gracie's fun fever and sore throat! He was a real bear on Sunday and I took his temp under his arm. It was normal and being difficult isn't unheard of for him so we brushed it off as a bad day. on Monday he felt warm again but the underarm temp was normal agsin.  By lunch I took a rectal and sure enough it was 100°. I'm not sure why I didn't realize before but he never has an accurate temp unless its rectal. Once the motrin was onboard and we were cuddling on the couch he was resting. I also put together that he had a sore throat. He kept asking for food and would put it in his mouth but wouldn't swallow, just pool it. He was also drooling, even though he had a pac. I know at nearly 4 he needs to lose the paci but without it he tends to sit with his mouth wide open and is drooly. Plus it keeps him quiet and me sane!

Today was better but he woke up early with his once a week poop that of course was a stinky mess! That started his day off with a bath and while he loves a bath first thing in the morning is not his scheduled bath time! We know how much he hates going off schedule or routine. Let me just tell you that he was no barrel of monkeys this morning. Nothing I did was right and I was trying it all! Thankfully he didn't have a fever all day so that means school tomorrow!

It also seems like this little bug has increased his motility. Odd, right?!?! He has been asking for food all day. He didn't eat much but he drank a million gallons of soy milk, water, ice, juice and tea. He's had the wet diapers to prove it too. Dirty ones too!!! We shouldn't have to use the Miralax tomorrow! The drinking and desire to eat is pretty great....the pooping, not so much!

I want to ask a favor of y'all. This has been a tough year for mito kids. Several families had to say goodbye to their little ones way too early. But then there are the rays of hope that shine through. One of our mito heros started the drug trial, EPI-743 in California today. I'm praying this drug will help his little body, that it gets a big green light from the FDA and that it helps all our mito kiddos. There's another ray of hope too. A 14 year old girl, Delaney, started a FB page to raise awareness for mito. Her brither,  Grant, has mito and she is trying to get as many as people as possible to visit and "like" her page. It'd be great if you could spare a minute to check it out and click "like"! Thanks so much!

Sunday, August 28, 2011

Delayed but quick update

Wow, long time no post!! We are now the proud owners of high speed internet and Barry got Nexflix tonight. Why didn't anyone tell us that we'd been living under a rock?!?! We thought we'd be so excited to be in the real world but we've been too busy to toy around much. While browsing the available movies in Netflix I found several ancheit movies I want the kids to see. I'm sure they'll think my movies from the '80s are as cool as I remember them to be!

Gracie was sick a few days last week. On Wednesday morning she called from school saying she had strep. She hasn't had strep but she said that's what it felt like. And I agreed that the quick onset of a sore throat, headache, stomach ache and fever did seem very strep-like. The doc ran a swab but she took a shot without waiting on the results because it seemed so certain. Fast forward to Friday and she's still running a fever.... I called the clinic and turns out her strep test was negative! I also found out on Thursday night that Gracie had been using Asa's toothbrush.....because her's was outside! Don't ask me how her toothbrush got outside! I was certain As a would get this fun viral bug now! So far though he is fine, well, Asa fine!

Asa missed 2 days of school last week. I kept him out one day because Gracie just felt so bad that it wasn't worth getting her up and out for his 2 hour school day. And then once I found out about the toothbrush sharing I was convinced that he had the same virus and would contaminate his friends at school! And after 4 days home with me I'm pretty sure he is looking forward to school tomorrow! I know i 'm looking forward to it!

Friday, August 12, 2011

A couple of videos

Here's a couple of videos. The first was at the appt yesterday. Asa scooted right for the sink! We mixed things up by playing with a paper towel too. He'd wet it and then wring it out and tear it up. I figure there's OT skills in there somewhere!

This one was today. I had an eye appt (I'm allergic to the contacts or something!). Asa was rolling all over the waiting room...and messing with buttons and lights and equipment! I'm just so glad he felt like exploring! Afterwards we had to get drops and special solution (I'm so going back to glasses if this isn't better when I go back next week!). We explored a little and Asa found a holla hoop propped against a rack. He grabbed it and started hulaing! So funny!

I wish I had video of another funny activity from today. I laid down in the floor and Asa scooted over to me. He laid his head over on my and hugged me. Then he started trying to get on his knees by rolling onto me. Once he was laying completely over me he started raising up on his arms. So he's in a mostly crawling position with me underneath him!!! He was mainly laying on my face!! And the drool, man the drool! He'd raise up and start wiping it off my cheek. I tell it was the sweetest thing!! Plus it was really good PT work since he can't get into a crawling position! At nearly 4 years old he can't hold a 4point crawl pose much less get it or crawl! I was gonna suggest we scrap that PT goal on his IEP but maybe he will be able to do it one day! Anyway, I sure loved the cuddles or wrestling or whatever he called himself doing! Loved it!!!

Sick...or NOT?!

I took Asa to his pediatrician yesterday. For the last few weeks he has been really tired and just a little off in general. He hasn't had a fever or a cough or a runny nose, just not himself. I waited it out for a while then school started and his teachers started commenting how tired he was with the new schedule and I finally made an appt thinking that he'd snap out of it as soon as I had an appt! Well, he didn't snap out of it so I took him in.

It's kinda difficult to explain and I'm sure Dr. Woods thought I was crazy. First of all, Asa only goes to school 2 hours a day. He hasn't started therapy yet so he isn't having to do a ton of work although his teachers do put him in the gait trainer or the mobile stander. And get this, he tolerates the rolling stander better than the gait trainer. He'd rather be standing with his feet and legs all strapped in and pushing with his arms to roll around than in a gait trainer with a seat and walking around. Anyway, it's basically just playtime and he is DONE after a hour and a half or more!

Secondly, this started before school. 2 weeks before school. He started sleeping til 10:30 or 11 every morning after going to bed at 8:30 or 9. And then he didn't want to play during the day, he was happy to be held or to just sit on the couch with a book or in the highchair just hanging out. Since school started he's gotten up at 10:30. Eat breakfast, get ready for school, I drive him to school at 12, pick him up at 2, pick Anna up and we're home by 3. He them lays on the couch resting till Cade and Gracie come in at 3:45. Still he really just hangs out on the couch. Yesterday he laid there playing with his feet till 5 or later.

I guess it doesn't sound dramatic, and it's not, but it's definitely not his normal. His ptosis is also very noticeable in the afternoon and he has dark circles under his eyes. He is clingy and really just wants to lay around holding your ear! His motility has slowed too. He is having several gagging and nauseated spells a day. He seems be have gotten better at fighting it off though and we haven't drained as much as we were before but he is pretty miserable when it hits.

So I thought this was just a new normal for him but then I realized we'd messed with his diet this summer, he could be anemic. Or his ammonia could be high. Or he could be sick somehow. And then my mind wonders to the BIG stuff it could be! Thankfully it doesn't look like it's anything big! But it's also not anything small and fixable! Dr. Woods ran all kinds of labs and everything looks fine. Not perfect but only off a tiny bit. So I'm back to just be crazy and worried! I guess it's just a looong down time for him.

Asa did really well at the appt. He only cried when appropriate, he gagged at the throat swap but didn't puke, he gave the Dr. a high five and we were there for 2 1/2 hours! He did ALOT of sink playing and I have a cute video but I haven't loaded it yet....sorry! After the blood draw (which only took 1 stick, thank heavens!!!) I was gonna distract him with cartoons on YouTube but he doesn't really care for cartoons so I thought of a mito friend's blog. She recently posted a video that I hadn't watched so we turned to her kiddos. Asa stopped crying immediately and after only a few seconds of watching Emma laughing, dancing and talking, Asa started signing "love" over and over! How precious is that!!! We had to watch it 3 times. He also liked watching his own videos! Lol!!!

Sunday, August 7, 2011

Animal House

I'm not really an animal person. I guess I've had pets all my life they've just been the outside kind that you feed and pet but are pretty low maintenance! Unfortunately for me, we live in a drop off alley! I'm not sure why folks decide to leave random animals on our road but they do! Many times we feed the stray and call rabies control to get them. Some we do get spade or neutered and keep. Most recently we had 3 dogs that had been rescued by us at various times. One sweet girl got old and died. And just this spring a male was killed by other strays who weren't fixed so they bred and pack hunted! Gracie was the one who found the gruesome scene! Good times!

With a heartbroken Gracie and lone female dog left, we went on a search for a house dog! I had to be pretty picky about what dog we got because I have allergies, no desire to clean dog hair off furniture and Asa couldn't handle a loud dog. A vet knew a breeder who had a 1 year old male yorkie left and she only wanted enough to pay his shot fees!

Well, Zander has turned out to be Anna's shadow instead of Gracies!! Anna loves it and Gracie seems ok about it too. But then today....

We pulled up to church and someone had left a small, male well behaved dog! Gracie was in love and even though I don't love animals I'm not cruel so we brought him home, put him in crate and gave him water. Ok that's what I did! Gracie day dreamed about what she'd name him and where he'd sleep! She even got my dad to give him a bath!!

So I guess we now have 2 indoor dogs, one for Anna and one for Gracie. Unless of course someone else claims him!!

As if that's not crazy enough when I came in from church tonight Gracie and Cade were crawling around under the deck and in the over grown flower bed chasing 2 kittens! Apparently our Tom cat found a friend before we got him fixed!! The kittens only seem interested in our food and trash!

So, if anyone needs any pets you know where to go now!!!

Monday, August 1, 2011

Hi Ho, Hi Ho, it's back to school they go!

Today is the last day of summer break! It's back to the grind tomorrow! Anna will be a freshman starting high school, Cade will be in 5th grade and Gracie in 3rd grade at the same school. Asa will start out in the same class as last year but transition to another school before Christmas.

The high school didn't have an open house or meet your teacher night. Apparently teenagers don't want or need their parents checking up on them and school! Suuuuure! 3 of her 4 classes are honor classes this semester. I was hoping she'd have 2 this semester and 2 next semester. I'm sure she'll be fine but I just hope she isn't so busy that she can't enjoy this new adventure! Lots of changes!!

We went to the Meet Your Teacher night at Cade and Gracie's elementary school last week. This will be Cade's last year at this school. I really love our school! The teachers are great and many live in the community or have been at our school for many, many years. I think this gives us a community school kind of feel. Many of Anna's teachers have had Cade and Gracie as they've moved up. I just love that about our school.

This year 5th grade changed up a bit. Cade is still in a class with kids he's been friends with since Kindergarten. Their teacher is new to our school and the kids will rotate between 3 teachers. Getting ready for Middle School! His homeroom teacher is young and pretty so we teased that 5th grade may be the year the boys actually will love going to school!

Gracie is thrilled with the teacher she got this year. All summer long she's said she is getting Mrs. Sanders. I tried to tell her that we didn't know who she'd have but she was insistent that she had Mrs. Sanders! Thank goodness her name was on Mrs. Sanders door! I'm pretty sure that she'd gone in and sat down anyway! On a side note, I told Cade that I'd go with Gracie to her class when they called 3rd grade and then meet him at his room when we finished. Gracie told me she wasn't scared and wanted me to go with Cade so she could go by herself and with a friend! So that's what we did!

Then went to Asa's open house yesterday. All last year he never really cried when I left. He'd cry when I picked him up, like he was just realizing he missed me! We started talking about school last week just to remind him. As we drove to the school I think Asa was remembering the route. He was looking out the window and doing a happy hum. As we turned on the road the school is on and saw the buses he got quiet though! We parked and got in the front door and all was ok. We went to his room and it wasn't ok!!! He started crying and wailing. I took him out of the wheel chair and held him. Still crying! His teacher came to say "hi" and he turned his face into my neck and cried "nooo"!!! First word?! It sure sounded like a real "no"!! He did go to the assistant but only for a second. He spent the next 10 minutes in a near solid cry and sob, getting all hot and red faced! He quieted down for a few rounds of a computer game but that was only for a few minutes. He did give both teachers a high five when we left! We left out the classroom door instead of going out the front so Asa's screams wouldn't frighten any wary Pre-Kers or Kindergarteners! I'm a little nervous about him tomorrow!

I'm gonna miss summer break, probably more than my kids. Don't tell them though! I'm gonna miss sleeping in, days with no activities, pool days, pj days and just fun, no work! I have a feeling that homework is gonna be a booger for all 3 this year. And after school time is the worst time of day for Asa! I'm really not looking forward to that! But maybe I'll be wrong!