Just being real

This is me, and this is me being real....

I was going back over my blog posts the last couple of weeks, and most of them are negative in some way or another. I guess I'm in a funk! And then I realized why. It has been a very long couple of weeks with Angela.

I have no idea what is going on, but she has been absolutely horrible. There are a lot of factors contributing, I'm sure, hormones being one of them. But the rest? It's a mystery. Some of you reading know Angela personally, and have seen her when she's in her worst moods, so let me just clarify, THIS IS FAR WORSE! I haven't seen this level of aggression in a very long time. I won't go into all the details, but let just say WE ARE AT OUR LIMIT!

Not only have I been in tears every day, but I've gone to bed in tears because I either feel horrible about the day, or wonder how I could have handled various situations differently, or because I'm worried that I'm going to wake up to more of the same the next morning and have to do it all over again. It doesn't help that the only break I can really count on is when she goes to her dad's, and he's bailed on my the last couple of weekends. When all I'm doing is struggling to make it to the weekend when I know I can get a break, and then it's pulled out from underneath me. No, this does not go over very well in my spirit.

So yeah, this whining is all about me, me me me me me me. But what about Angela? She can't be happy. Why isn't she happy? Why is she so miserable that she's determined to make everyone around her miserable. Why is she SO ANGRY? No kid should be so angry. Is this just what happens when a kid can't communicate her displeasure with the world like a typical teenager can? I have been through some very rough teenagers, and believe me, this is FAR WORSE!

Or, maybe she's just in PAIN? Anyone I've talked to with Achalasia says it's excruciatingly painful, and we know that it's progressive. We also know that Angela has started having more trouble swallowing over the past few weeks, so maybe some of this anger is coming from discomfort?

So there are lots of questions, and there are no answers. That's the hard part for me mentally and emotionally. That there is no end in sight. That we will probably have this for many years to come and it makes me exhausted just thinking about it. Angela is so smart, and so funny, and so CAPABLE, but this crap holds her back in so many ways. The other day her teacher was in a situation with her, and kept reminding herself that WE live with this. We don't get to send the kid home and then enjoy the rest of our day. That was both validating and sad, all at the same time.

So that's my "being real" post for today. I'm a person who likes to find the good in all things, and man, I am STRUGGLING with that right now!

Ukraine

Interview gone wrong

Ok, here's the first take on the interview with Angela. I was interrupted by a phone call, and Angela took full advantage of the opportunity to have the camera to herself! I love her facial expressions when she's trying to think of something to talk about. What is even more funny, is Angela NEVER has trouble thinking of something to talk about, there is ALWAYS noise coming out of her. LOL Apparently the camera tones her down a bit.

Some context: She talks about the light she broke when she threw a penny. (lovely) She talks about making a zebra cake for Zurri (one of the dogs). I have no idea where that came from. Then again, I have no idea where most of her stuff comes from. She talks to a couple invisible friends about them making stuff too. Then she talks about medicine for her armpit. When I first watched this I was waiting for her to go more in-depth about her psoriasis and where else she has it! You never know with her. Thankfully she remembered our "some things are private" conversations. LOL

The interesting part of this video, is if you watch closely you can see her turn her head to the side quite a bit. When she's not in front of the camera she does it really hard. We used to think it was just a bad habit, but we found out last week she does it to clear her airway, as her esophagus is still full from the last meal she had, and that food won't get pushed out of the way until she eats the next meal. Also, you can see her working hard to swallow.

Interview with Angela

Angela has been bugging me to do an "interview" with her. It's kinda fun, but check back later for "The interview gone wrong" version! LOL

Here's the good one.

The apology video

Need something at Walmart?

You can find just about anything at Walmart, and now the selection just got bigger! On their online store they're now carrying caskets and urns. No, really. I went and looked just to make sure I had heard the news correctly and it wasn't a hoax. I had no idea that urns came in child or adult sizes. It's a volume thing. (What an awful thought!) They even have urns for pets!

I don't think there is anything wrong with buying these particular items at Walmart. It's all just a little too odd for me to think I can go to Wally world and buy them along with toilet paper, toothpaste and power tools. Oh, and if I need to, they'll ship it to my house in 24 hours. Can't beat the price though. $999-$3500.

Getting closer

Ok, the state of MN got the letter from the Ped. GI doctor. However, even though the Dr. they wanted us to see said, "You should go to Boston", the state of MN wants to know more about why we should go to Boston. Ummm Because the motility clinic at the U of M isn't even up and running yet, that's why! GAH!

If you drive in Minnesota

You mave have seen my previous rant about Zipper Merging in Minnesota. (also called the Dynamic Merge) in some states. It seems that MnDOT is frustrated too. In fact, they've issued a new notice about Zipper Merging, and how it's supposed to work! So, if you drive in MN, pass this along, will you?

Her own style

Angela has her own style of bowling, and this year she's finally become pretty accurate! She really wants to win a medal at the state tournament, so I've been explaining to her that in order for that to happen, she has to actually LOOK at the pins! LOL Well, she's finally throwing throwing the ball consistently, and her score goes up a little every week. We're hoping she can break 100 for the tournament in 2 weeks. Oh, and not only does she have a unique way of throwing the ball, but she likes to celebrate afterward too! LOL

So much for "emergent"

When we saw the Ped. GI doctor at the U of M a week ago, she was writing a letter to the state of MN that Angela needs to be seen on an "emergent" basis in Boston. Guess what? The state hasn't even gotten the letter yet, and it gets faxed directly to the person who needs it, so it's not like it goes through 20 people first. Good grief!

Oh, and that same doctor wanted Angela in for some testing early tomorrow morning and "They'll be calling you to get it all set up." but I haven't heard a word from them yet.

Vent of the day: Zipper Merging

This is my vent of the day. (Thanks to TUC LOL)

People, you have to learn how to "Zipper Merge"!

You're driving down the freeway, and see a sign that says "Construction ahead. Right lane ends 1 mile."

What do you do? Do you move over right then? Do you move over 1/2 mile down the road? Do you see the traffic backed up and you drive all the way to the end to where you MUST merge?

90% of Americans think you should move over right away, or pretty soon anyway. But you certainly don't wait until the end. That those who drive all the way to the end are "rude" or "selfish", or similar thoughts.

There have been LOTS of studies on the most efficient ways to move traffic when a lane has to be closed down. Guess what? The Zipper merge won, but ONLY when it was done CORRECTLY.

Do YOU know how to zipper merge correctly? You're SUPPOSED to go all the way to the end of the lane, then the cars from the right lane move over in an alternating fashion (meaning each car in the lane being merged into lets a car from the right lane in.) Seriously, how many of you DO this? No, instead you'll give someone the finger because they "waited till the last second to move over." Or..as happened to me the other day, you'll scream at them out your window.

Seriously? Don't believe me? The MN DOT goes so far as to put out PSA's about zipper merging. (It's called a "Dynamic Merge Point" (graphic here) in some states.) Most new drivers are now taught about zipper merging in class, but us old people are clueless. LOL I think that as each person renews their drivers license they should be handed a flyer on how to Zipper Merge correctly. Now, weather or not they actually CHOOSE to do so is hard to say. After all, nobody likes to be told they've been doing something wrong for the past 10 years, right?

Ok, jumping off my soap box now.

Why?

People often ask me, "Why do parents adopt these kids with Down syndrome from Eastern Europe? Aren't there kids here, in the U.S?" That is a question I can easily answer. First, in the U.S. there is a waiting list of families who want to adopt an infant with Down syndrome. People who don't know DS think it's a tragedy, but those who know often want more. Secondly, even for children in the foster care system in the US, the care is far superior to those who were unfortunate enough to be born in Eastern Europe. And last, but certainly not the least important, God could care less about national borders. God chose us, and he didn't specify that we live in a particular country, did he?

Here is what life is like for children with Down syndrome in Eastern Europe. Next spring I'll be traveling with my friend Shelley to bring her two little boys with DS home from Bulgarian institutions.

The Devil Made Me Do It!

So the other day I'm driving up the road. It's a 4 lane road, with me in the left lane, one car directly in front of me, and a car in right lane right next to me. We're side by side. In my rearview mirror I notice a RED sport bike (aka crotch rocket) coming up FAST from behind. TOO FAST in fact. The next thing I know, he goes BETWEEN my car and the car next to me!!!

He wobbled as he was nearing our front ends, and I was sure I was going to see him die as I ran over him, but he accelerated out of the wobble, and pulled into right lane in front of the other car. Then he proceeded to drive down the road NO HANDED while pretending to play air drums! Seriously? I wanted to smack the guy! It's riders like THAT that give the rest of us riders a bad name! You ride like an idiot, you get treated like an idiot.

I was still fuming 1/2 mile down the road when we came up to a stop light, mostly because he continued to right like a cocky asshole! Pulling up to the stop light, I was now in the right lane, and him in the left. There is a car in front of him, and another in front of me. As I came to a stop, I rolled down my window, "You idiot! You make the rest of us who ride have to make up for YOUR stupidity! WE try to ride safe, and then there are idiots like YOU who ruin it for everyone else."

He looked me in the eye, and laughed the most even laugh I have EVER heard. No kidding, it sent chills up my spine. All the while looking me right in the eye.

Just then, my toe slipped off the brake pedal, and my car bumped the car in front of me!!!!

OMG, I wanted to crawl into a hole and DIE! Now the evil biker guy is laughing his evil laugh so hard I thought he was going to fall off his bike. Not only that, but I'm STUCK sitting next to him because the light is still red, AND, now I'm going to have to deal with the driver of the car in front of me. You know, because of my super safe driving skills I had just bitched at evil biker guy about.

Finally the light turned green. Evil biker guy hollered, "Thanks for MAKING MY DAY!!!" and raced away. I followed the car I'd bumped around the corner, and we got out of our cars to check the damage. Because we'd been completely stopped just before my toe slipped off the pedal, there wasn't even a scratch on her car, and only a small one on mine. I felt HORRIBLE about the whole thing, and once we discovered there was no damage, I explained what had happened. Apparently she was the car who'd been driving along side me, so she'd almost hit the evil biker guy too. She was glad I said something to him.

I, on the other hand, am STILL seeing his evil eyes and hearing his evil laugh as I re-live bumping the car in front of me! Note to self...keep thy mouth shut!

A Rescuers Answering Machine

A RESCUERS ANSWERING MACHINE:

Hello: You have reached ___-____, Tender Hearts Rescue. Due to the
high volume of calls we have been receiving, please listen closely to
the following options and choose the one that best describes you or
your situation:

Press 1 if you have a 10-year-old dog and your 15-year-old son has
suddenly become allergic and you need to find the dog a new home
right away.

Press 2 if you are moving today and need to immediately place your
150 pound, 8-year-old dog.

Press 3 if you have three dogs, had a baby and want to get rid of
your dogs because you are the only person in the world to have a
baby and dogs at the same time.

Press 4 if you just got a brand new puppy and your old dog is having
problems adjusting so you want to get rid of the old one right away.

Press 5 if your little puppy has grown up and is no longer small and
cute and you want to trade it in for a new model.

Press 6 if you want an unpaid volunteer to come to your home TODAY
and pick up the dog you no longer want.

Press 7 if you have been feeding and caring for a "stray" for the
last three years, are moving and suddenly determine it's not your
dog.

Press 8 if your dog is sick and needs a vet but you need the money
for your vacation.

Press 9 if you are elderly and want to adopt a cute puppy who is not
active and is going to outlive you.

Press 10 if your relative has died and you don't want to care for
their elderly dog because it doesn't fit your lifestyle.

Press 14 if you are calling at 6 a.m. to make sure you wake me up
before I have to go to work so you can drop a dog off on your way
to work.

Press 15 to leave us an anonymous garbled message, letting us know
you have left a dog in our yard in the middle of January, which is
in fact, better than just leaving the dog with no message.

Press 16 if you are going to get angry because we are not going to
take your dog that you have had for fifteen years, because it is
not our responsibility.

Press 17 if you are going to threaten to take your ten year old dog
to be euthanized because I won't take it.

Press 18 if you're going to get angry because the volunteers had the
audacity to go on vacation and leave the dogs in care of a trusted
volunteer who is not authorized to take your personal pet.

Press 19 if you want one of our PERFECTLY trained, housebroken, kid
and cat friendly purebred dogs that we have an abundance of.

Press 20 if you want us to take your dog that has a slight
aggression problem, i.e. has only bitten a few people and killed your
neighbor's cats.

Press 21 if you have already called once and been told we don't take
personal surrenders but thought you would get a different person this
time with a different answer.

Press 22 if you want us to use space that would go to a stray to
board your personal dog while you are on vacation, free of charge,
of course.

Press 23 if it is Christmas Eve or Easter morning and you want me to
deliver an eight week old puppy to your house by 6:30 am before
your kids wake up.

Press 24 if you have bought your children a duckling, chick or baby
bunny for Easter and it is now Christmas and no longer cute.

Press 25 if you want us to take your female dog who has already had
ten litters, but we can't spay her because she is pregnant again and
it is against your religion.

Press 26 if you're lying to make one of our younger volunteers feel
bad and take your personal pet off your hands.

Press 27 if your cat is biting and not using the litter box because
it is declawed, but you are not willing to accept the responsibility
that the cat's behavior is altered because of your nice furniture.

Press 28 if your two year old male dog is marking all over your house
but you just haven't gotten around to having him neutered.

Press 29 if you previously had an outdoor only dog and are calling
because she is suddenly pregnant.

Press 30 if you have done "everything" to housebreak your dog and
have had no success but you don't want to crate the dog because it
is cruel.

Press 31 if you didn't listen to the message asking for an evening
phone number and you left your work number when all volunteers are
also working and you are angry because no one called you back.

Press 32 if you need a puppy immediately and cannot wait because
today is your daughter's birthday and you forgot when she was born.

Press 33 if your dog's coat doesn't match your new furniture and you
need a different color or breed.

Press 34 if your new love doesn't like your dog and you are too
stupid to get rid of the new friend (who will dump you in the next
month anyway) instead of the dog.

Press 35 if you went through all these 'options' and didn't hear
enough. This press will connect you to the sounds of tears being
shed by one of our volunteers who is holding a discarded old dog
while the vet mercifully frees him from the grief of missing his
family.

~Author Unknown, but much appreciated

Yes, she is still disabled

Some of you are very familiar with the term SMRT. It stands for State Medical Review Team. Really, this team drives me insane.

Some people think that having your child in Medical Assistance is easy. Umm...no, it's NOT! It's a PITA really. Every 6 months I get forms I have to fill out and update. Every year I have to re-do our income stuff, which is interesting since Angela is on a WAIVER, and the purpose of the WAIVER is to WAIVE the typical income requirements so they look at HER income, and not the household's income. Still, every 6 months I have to submit the household income.

And then comes the SMRT. Every 3 years I have to prove that Angela is still disabled. I have to submit all medical reports and documents saying what her current diagnosis are. I have to have new assessments done by the specialists she only sees at this time (for her, this is psychiatry) and it just adds a lot of appointments to an already full schedule of medical appointments. Not only that, but Angela has to have TWO portions done, "Disabled" and "Mental Health" because that's where the TBI waiver stuff falls. (Angela is on a combined waiver NB/TBI = neurobehavioral/traumatic brain injury) I understand WHY they do this. Really, I do. It just drives me crazy because all of her diagnosis are things that aren't going to go away. They are life-long things. Can't they just flag her file and stamp "Lifer" on it or something?

Dog issue solved!

I forgot to mention something in my last post. We have a vet tech. who sometimes stays at the house with the dogs when we go out of town. She has offered to stay FREE of charge so Dean can go to Boston with us! THANKS AMANDA! Now, I just have to convince Dean to go to Boston with us.

Stress

I think it's safe to say Dean and I are stressed right now. Prayers would be a good thing.

There just feels like too much stuff happening at once. School is a HUGE thing on my plate right now, and I keep thinking "I've only been at this for 8 weeks. I have two more YEARS ahead of me!" And..umm...HELLO two of my classes are easy! (the just eat up time. grrrrr) But I know I'm supposed to be here right now. I know it. And I enjoy going to classes. The work hasn't been super hard (well Anatomy is!) The other night we were watching "Brothers and Sisters", and one of the brothers is in a REAL anatomy class (with cadavers. blech!) and learning "the hand", which we just finished. The hand and arm is grueling! Do you know how many muscles and nerves are in there??????? OMG! Do you know how many bones make up YOUR WRIST? UGH! And they all look the same. And every little bump on them has a purpose. But, I digress...

So, there is school. There are the dogs, which have been mud-soaked for 2 or 3 weeks now thanks to the fact Mother Nature seems to have a bad case of H1N1! Muddy dogs means a muddy house all.the.time!!!!

Of course, there is Angela's behavior, which is a constant. I've gotten "that call" from school every day this week. Except yesterday. Yesterday the phone rang at 2:59, and school was on the caller ID. When school calls at 2:59 it's because something happened causing Angela to miss the bus. They're swimming at school this week, so all of her behavioral problems have been related to that. It just so happens that swimming is their last class before bus time, so if Angela has an issue, she misses the bus. So yesterday I answer the phone at 2:59 with, "I'm headed to the car right now." Only I was wrong! Her teacher replied, "No! She's on the bus. It's just I've had to call you every day this week, so I wanted to be able to call with something positive!" Then proceeded to tell me how swimming went WELL because of an extra script they've added to help Angela make it through the transition from pool to locker room.

So her Thursday may have been good, but the rest of the week not so much. I have a TON of homework this weekend, so was looking forward to Angela going to her dad's so I could work uninterrupted while Dean is trying to get fall outdoor projects done. Only someone named "Harold" is sick at her dad's work, and for some reason when "Harold" is sick, it means her dad can't take his weekend with is kid. Ok, I'm going to keep my mouth shut and not say anymore on the topic! Those that know the story know this happens on a REGULAR basis. Today there is no school, and I'll be trying to right a final paper for one class, that is due at 4:00 this afternoon. Say a prayer, will ya? LOL

Then, of course, there is the whole medical mess that is Achalasia. I spent most of yesterday on the phone (when really I should have been doing my paper that is due today!) with either the U of M, Boston Children's, or the state of MN. And every time I watch Angela eat, I want to cry.

And then there are "other stresses" that I'm not going to mention here. They just exist, and they put a strain on everyone in the house. They're normal things, but we have too many abnormal stresses so the normal ones seem bigger I guess.

Ok, no more downer posts! Blech! Pooey! Wrong way to start the day.

Reclining while intoxicated

Ok, a guy in Proctor, MN plead guilty to DRIVING a La-Z-boy while intoxicated. Seriously, I couldn't make this stuff up! Here's the article to prove it! As with all DUI's, his vehicle has been confiscated. Oh, and it's his second DUI. Smart guy.

Ewwwwwwwwwwwww!!!!!

There is now no way on God's green earth I can avoid getting sick with SOMETHING. Only a miracle can prevent it.

Tonight I had class, and one woman came in VERY sick. Coughing, sneezing, spewing droplets of sickness all over the room. She normally sits next to me, but tonight sat 2 seats behind me. (nobody in between.) Every time she coughed her horrid cough, I could feel the droplets swarming around me. Ok, I might have imagined that part. For two hours, I sat wanting to put the front of my sweatshirt over my face.

After two hours, we had to move our desks around, and she sat next to me. I cringed.

Then it happened. I reached down and picked up my pop, took a sip, and put it back down. That's when she said, "Was that my pop or yours?"

eeeeewwwwwwwwwwwwwwwwwwwwwwwww I drank her POP!!!!! Nooooooooooo I wanted to spit in the trash can, and wipe my tongue on my sleeve. Or vomit so the acid would kill the germs in my mouth. I spent the next hour of class feeling completely doomed. Like I had just drank a VAT of flu virus.

As soon as class was done, I ran to the drug store and scoured the shelves. Anything...anything that would kill the vile toxins in my mouth. Every swallow I take, I feel like I'm swallowing more germs. I asked the pharmacist his opinion, and he basically said, "You're screwed!" I bought Zicam and Airborne. I wanted EmergenC, but couldn't find it. I came home and took both remedies, and will spend tonight praying. Then praying some more.

Aside from just getting sick, which nobody wants, I'm very prone to pneumonia. When I get the flu, I ALWAYS develop pneumonia. The flu hits me like mack truck. And, you KNOW I'm going to be so freaking paranoid for the next several days. I'm going to feel every little twinge. "Does my throat hurt? I think my throat hurts. Do I feel a chill? I think I have the chills. I think my muscles might be a tiny bit achy." Yep...it's gonna be a long couple of weeks!

H1N1 Vaccine: Check!

While we were at the U of M today, Angela was able to get the H1N1 vaccine today. They had just gotten it in a couple hours prior to our arrival, and are giving it to high risk kids who come into the hospital for appointments.

Update on Dr. visit

The specialist at the U of M is writing an "Emergent" letter of recommendation to the state of MN stating that Angela MUST go to Boston for highly specialized testing ASAP. She's also calling Boston to have them schedule her asap as well. One of her many questions was, "How soon can you travel?" We could go as early as the end of next week, or it could be a month from now. It all depends upon how fast the state of MN and the Boston clinic can work things out.

She did say that Angela also needs rectal manometry done, because chronic constipation often goes along with Achalasia, and it's important to find out the cause of Angela's constipation. It could be she has nerve damage there too. So, she'll be having that testing done next week on Weds. Please pray for her, this is horribly embarrassing testing to go through at 13 years old, and she'll be completely awake for it.

We're also trying to figure out how Dean can come along on the trip. I really need him there with me, and Angela will be thrilled that he's coming along as well. (he rates far higher than I do! LOL)

Boston and Cricopharyngeal Achalasia

Have you ever dropped the ball on something? How about, if you're the parent of a child with a complex medical history, have you ever just gotten so tired of the constant unanswered questions that you just stop???

Well, last spring, when we discovered how bad Angela's achalasia really is, the doctors at Mayo suggested we see Dr. Sam Nurko at Boston children's. In order to do that, it had to be approved by the state of MN. The state denied the request, saying the University of MN can do the testing here, and that the doctor here had done her training under Dr. Nurko in Boston. IF the dr. at the U of M writes a letter recommending we go to Boston, then we can go.

Insert big fat sigh here

I already knew the U of M had the testing equipment. I knew because I had called and talked to one of the program nurses who told me they'd *just* gotten it, and were being trained how to use it. Yeah, that's a comforting thought! NOT! I had images in my head of a doctor with a big head, all excited they have new equipment and look! A new patient with a very rare disorder! WHOO HOO! Jackpot!

And so I just stopped pursuing it. Angela has been like this for 12 years and we didn't know it, and while she's had some discomfort here and there, she's ok.

But this past weekend was NOT ok. Angela had a lot of trouble with various foods. Monday morning before school was exceptionally bad. She'd had a breakfast pizza, and it took her forever, with lots of retching and discomfort, and about 2 hours of drinking tons of water to get it to move through her esophagus. I felt like a heal. But Mondays are crazy busy for me with school, dog school, and other stuff.

Yesterday rolled around, and I realized I had NO EXCUSE for not calling the U of M. Especially when you consider they usually schedule out weeks to months in advance. I couldn't put this off any longer. So I called, and got the Ped. GI nurse, and said, "I'm not sure who we need to see there. Whoever trained under Dr. Nurko. But to be honest, I don't want to see ANYONE there, I just want a letter saying we need to see Dr. Nurko."

The nurse on the other end of the line chuckled. "Yes, we're very familiar with your daughter's case. (apparently it's been discussed among the three doctors) Dr. G. will be more than happy to write the letter so you can get to Boston. Our motility clinic isn't even up and running yet, and won't be for quite some time. We're still learning to use all the equipment, and have to be proficient with it before we can even think about testing patients with it. But the state of Minnesota says we have to physically SEE Angela, so how about if you come in tomorrow at 2:30 for a quick appointment, and we'll send you on. "

Are you serious? I have stalled for THREE months...why???? OMG! I could kick myself.

Once we have that letter, things should move very quickly. Dr. Nurko in Boston has already reviewed Angela's records, and has a plan of treatment for when we finally get there.

1) Do a new endoscopy, and at that time place the probe for the esophageal manometry testing. Because she'll have general anesthesia in her system, the probe will need to stay in 24 hours before they can start the actual testing. This is to make sure all the anesthesia is out of her system so it doesn't skew the test results. Hanging around with the probe in the esophagus carries it's own risks, but I'm not too worried about it.

2) do the actual manometry testing. This will tell us if the problem is A) due to nerve damage or B) due to a problem with the Upper Esophageal Sphincter. The outcome of the test determines our next step.

If the problem is found to be a problem with the sphincter muscle, they will go back in for another endoscopy, surgically separate the muscle, and also inject it with Botox to make it relax. This would need to be repeated about ever 2 years, and we would ALWAYS go to Dr. Nurko to do it.

If the problem is due to nerve damage, there isn't anything we can do. We will come home, and we will continue on as we have been. Eventually Angela's esophagus will give out, and she won't be able to eat solid food anymore, and possibly NO FOOD, and be back on a g-tube. So far, the doctors are surprised this hasn't already happened. As it is, her esophagus is completely slack. There is ZERO tone to it. Take a COOKED spagehtti noodle and hollow it out, now hang it from your jaw line to about where your stomach is. That's about how much tone Angela's esophagus has.

Obviously, we're hoping to find muscle problems! That's about enough info for now, huh? When I told Angela I was picking her up early from school today to see the new Dr. she was all excited that we were going on a plane to Boston today. LOL Whenever it is we go, we plan on being out there for a week. No time to DO anything there, just hanging out in the Children's hospital. I really want Dean to go along, but we really can't afford for him to go. It's not just his airfare, it's also paying someone to stay with the dogs.

So that's the update for today!

Crazy busy

OMG

I have a mid term tomorrow and Friday. So far tonight (well, it's now 1:22 a.m.) I've been scrambling to get the last of my assignments done for one class that ends on Friday. My day tomorrow looks like this (and I'm sooo thankful I only have one kid left at home!):

Tomorrow:

8:30, Angela to the ped. for a UTI and a funky looking eye.

10:00..Drop Angela off at school, and run to MY school to seek out two people who hold documents I need to turn in on Friday. Hopefully I can take 5 minutes to glance at the vocab needed for my Weds night midterm.

1:30 pick up Angela at school to bring to the U of M appt. Beg for H1N1 Flu shot while we're there. (I wasn't going to have her get it, but now I'm determined that she IS going to, since it will attack her respiratory system right away.)

Race home. I have to give an oral report tomorrow, which I'm totally unprepared for. Well, I have it in writing to turn in, but I need it put to note cards for my oral report.

6:00 class. Give oral report and take Midterm exam.

9:00 come home and start doing this week's assignments for Medical Terminology (2 chapters, the female reproductive system and the endocrine system) Test is on Saturday. Start cramming for Friday's final.

Thursday is just a lot of home work. Same with Friday but Angela doesn't have school. The weekend will be spent doing a HUGE report I've been putting off, but is due next week on Weds.

UGH.....Where's the Calgon?

FYI: Angela's Cell Phone Usage

Some of you have seen this post on Angela's blog. (and yeah, I know, she hasn't written in forever!) She's very good at using her cell phone now, and only occasionally calls the wrong person. (she has a lot of "D" names in her contact list. LOL)

But, some people have made the mistake of saying things to her like, "Hey, call me on your cell phone!" which means for the next 2 million days she's going to ask me over and over and over again for that person's phone number! And, if you're dumb enough to say that to her, knowing she has the memory of an elephant and forgets NOTHING, then I'm going to oblige her and put the number in her phone, because I can only stand the begging for so long people!

I didn't know that she got up at the crack of dawn this morning and was calling people before she woke me up. I think she intended to call Dean at work, but remember what I said about all those "D" names? It's about time she wakes her Dad up. I have to get up with her every day of the week, he can get woken up once in awhile. It's not my fault he's not always in the same time zone. And Dan, you ASKED for it. And you weren't home tonight...Tuesday...when you told her to call you because she could COME OVER. Seriously, this is all I heard this morning before school and all evening once she got home. "Dan said I could come over on Tuesday. Can I call Dan again?"

How did you get here?

You may have noticed, on my right sidebar, I have a live feed that tells where people are coming from to get to my blog. Some people have me bookmarked, while others come via someone else's blog. But there are many that come via google search. Wanna know what they search? These are the most common, in order of frequency (with links to the post the search brings them to):

Dog nails : People have a lot of questions about their dog's toenails! Seriously I get 3-4 hits per day on this topic, which cracks me up. The biggest question is "does the quick grow?" one person wondered, "Will my child get sick if she eats dog toenail clippings?" Ummm....eeeeewwwww!!!! For those of you who searched, YES, the quick (or vein) in your dogs nail grows along with your dog's toenail. The longer the nail, the longer the quick. So if you've gotten behind on trimming your dog's nails, it's going to take awhile to get them trimmed down short. Each time you trim the nail to the EDGE of the quick, it causes it to shrink back a little bit. So, trim your dog's nails each week and before you know it he'll have tiny nails that won't be marking up your floors!

The Witch Tree : Yep, that comes in number two. I'd never heard of it before last year, but apparently it's quite popular. People from all over the country search for this thing. Can someone tell me, how did you hear about it? What shocks me even more is I get at LEAST 2 hits on this every day.

Palate Expander : Lots of people looking for pictures of a palate expander, and wondering how it works, and is it really necessary for their child. Unfortunately for us, it wasn't the best thing for Angela. Oh, she needs it! But her swallowing is too unstable for her to be comfortable wearing it. She was awesome about me cranking on it, and cleaning everything, but she couldn't eat at ALL while it was on. That was one very long week!

Narcoleptic Insomniac: You see, I have Narcolepsy (I was diagnosed about 12 years ago, as was my son Noah when he was then 12) and there are periods of time when I don't sleep. Thus, the title of the post.

Achalasia : Angela's palate expander causes us to find out exactly what IS going on with her swallow. This landed us at Mayo clinic, and getting lots more scary news. There will be an update on this later this week. By the way, Angela's specific type is called "Cricopharyngeal Achalasia". Which is the fancy way of saying the cricoid cartilage of the esophagus in the pharyngeal (upper esophagus) region, and "achalasia" which means difficulty swallowing. Put it all together and you have difficulty swallowing in the region of cricoid cartilage of the upper esophagus in the pharyngeal region. Aren't you glad you asked? Again, check back later in the week for updates about this issue!

"What causes Down syndrome?" : Well, October is a good time of the year to find that information, since it's Down syndrome awareness month! But this question brings people to my blog a couple times per week.

IEP meeting

A lot of parents, when preparing for their first IEP meeting, get themselves all worked up and prepared for battle to get the things they know their child needs in school. I'm very fortunate, that my "battles" have not only been rare, but could hardly qualify as a "battle".

I had requested an IEP meeting because I want to lengthen Angela's school day. For the past 4 years she's only gone 1/2 days because she just gets too tired. (actually, her day is shorter right now than it was at the end of last school year!) Once she gets tired the behavioral issues are non-stop, and it's pointless to have her in school because all they're doing is try go get her (and the other kids) safely to the end of the school day! Not much "productivity" happening on Angela's part at all. Right now, she doesn't go to school until 10:00, and comes home with the other kids at 3:15.

This year, since we've dropped one of her meds that adds to the fatigue factor, she's much less tired, and I've decided it's time to bump her up to 3/4 day. My thinking is if we add to her day, and the behavioral problems stay at the same time of day (the last hour or so of school) then we know the issues she's having are with what's happening at that time. If we start her earlier, and the behaviors start happening earlier, then we know it's the fatigue factor.

For now everyone is agreeable to to adding 1/2 hour to her day, then, assuming all goes well, the beginning of December we'll add another 1/2 hour. I'm hopeful we can get her back to a full day by spring.

The other issue I wanted to discuss was lunch. Angela hasn't eaten lunch in the lunch room with the other students since she was in 2nd grade! Almost every year we've tried, and every year it proves to be too much for her, ending with students getting milk dumped over their head, or trays thrown at them, or other lovely little things like that! Last year we didn't even attempt the lunch room. Instead she was perfectly content to eat in the special ed. room all by herself, but I KNOW she really wants to be with the other kids. It's just to noisy and chaotic for her in that environment.

Since it's been well over a year since we've tried, we're all willing to try it again. Her Homebase teacher is going to come up with a sign-up list for students who might like to get out of her English class a few minutes early to go eat with Angela. They'd all get down there and go through the line together BEFORE the entire 7th grade arrives and the mayhem begins. They'll have a table off to the side, a little bit away from what I like to call the "visual noise" (all the movement) that is part of the lunch room. Angela's special ed. teacher is going to give a little presentation to the other 7th grade class, explaining to them WHY the lunch room is hard for Angela, but that she really wants to be by THEM, and how they could help her get back to hanging out with the other 7th graders at lunch.

Getting Angela back to the lunch room has an added benefit. Right now the other 7th graders only know her from Home Base, which is much more of a controlled, structured environment. They see Angela in the hallways, but they only see her in one other class. That means her social opportunities with typical kids outside of school is quite limited. Who would invite someone to hang out if they don't know her? Well, that and there might be a kid or two from her previous elementary school who remembers getting milk dumped on them and may not want anything to do with her!

Her adaptive PE teacher was also at the meeting and I was able to hear from his perspective how she's doing. For some reason I have this picture of her just being a total pill in PE all the time, and apparently I'm very wrong! One day they were playing football with her Home Base group, and her teacher said to me, "Did you KNOW she can play football? She LOVES it!" And I was like, "Oh great, teach her to tackle people." We all laughed, but it was fun to hear the things she's doing that I thought were beyond her. I've never been one to coddle her, but you know, when you're not there to see, you just don't know! Anyway, Angela r.e.a.l.l.y wants to play floor hockey on the adaptive rec. league, but to be honest, I'm very leery about giving her a WEAPON in the form of a hockey stick! I can just see somebody taking the puck from her, and her turning around whacking away at them. But her PE teacher didn't think this would be an issue. So we'll give it a try I guess! I know she'll love it, because she's been wanting to play forever. I'm just very big on protecting the other kids too!

Our home behavior specialist attended the meeting as well, and afterward she and I had a few minutes to chat. She was very impressed with how flexible the staff was, and how willing they were to try new things, and do some brainstorming, and subsequent juggling of schedules to find a way to make Angela's school day work. She said it IS hard to find school staff that is so willing to try everything, especially when it means going out of their way to make it happen. I'm so thrilled with the staff we have, and feel blessed to have them!

On costumes and dating

Today I took Angela to get her Halloween costume. She spent 6 months saying she wanted to be a "jail person" (aka, a prisoner) and her buddy Adam was going to be a cop. About a week ago she changed her mind, and wanted to be a "green monster" instead. Funny, since she won't even go INTO the Halloween isle because it's scary. LOL

So today we went searching for the green monster. I pointed out a couple and she's covered her eyes, "Too scary!" and refused to look. Finally she decided to look for something else. Hmm...maybe she would be a cop like Adam AND Carl? We went into another isle where the build-your-own costume pieces were. I pulled out a light blue police officer hat...

Me: Here Angela, here's a cop hat.

Angela, with a complete look of disgust: "Mom, that's a MALL cop!" (apparently "mall cops" are a bad thing. LOL)

Tonight while I was at class, Dean and Angela went to Wendy's for dinner. While they were eating Angela excused herself to the bathroom. When she came back she slid into the booth and said, "So, where were we on this date?"

Legs

Uncle Dan was teasing Angela in the car. Angela replied with, "Dan! You're pulling my leg off!"

What was your "Aha!" moment?

Please please please, go vote QUICK, as the deadline is tomorrow! Go see this man's "Aha" moment! The winning commercial will be part of Mutual of Omaha's 2007 ad Campaign.

AHA MOMENT

What do you see?

Watch the cards change color...or do they?

Holy cow!

I love that neither of them have front teeth! LOL Other than that, these must be the most talented kids in Ukraine!!!

One test down!

Well, I took the test, and my score was probably about average in the class. The test is divided into two parts. I did ok on the first part, but plan on retaking the second part. I made a couple stupid errors, but the rest was pretty predictable.

First big test

Tomorrow morning is my first big test. Only, I won't have time to review in the morning before I go, because Angela has an orthodontist appointment. UGH!

I have no information in my head related to what is on this test, all the information we've studied over the past 4 weeks gone from my memory. What I studied 2 days ago is gone, replaced by what I studied tonight. If I open a book right now (midnight) whatever I take in will replace what I studied an hour ago. Man, I hate that feeling!

So, either I know the stuff or I don't. Our professor, ever confident in our abilities, had told us we'll all fail this first test, but never fear...we'll have a chance to retake it. Your reaction was probably the same as mine.

So Lord, please let all of this information miraculously appear in my head tomorrow! Let me fill in the blanks correctly, match the right letters to the right words, remember all my directions. You know where my weak areas are Lord, and I trust in you to see me through this test!

What did YOU do Friday night?

Ummm...I hate to admit this, but I hung out at www.peopleofwalmart.com Sad, I know.

A little education

So, a family contacted me about puppies. They had applied to purchase a puppy from another breeder, who turned them down BECAUSE their son has Down syndrome.

Yeah, I was speechless too.

And then I was angry. Apparently this breeder had sold a puppy to a family with a child who had autism, and because THAT child was aggressive with the puppy she has decided every other child with Autism (or DS) must be as well. Grrrrrrrrrrrrr

Now, I realize it wasn't YOU, my readers, who made those assumptions, but since it's DS awareness month, I decided to post these old videos of Angela with the dogs.

The first is when she was 10. Our puppy are matched with their families at about 6 weeks old. Once they're matched the family can name the puppy and we try to call them by name whenever handling them. Many of the families live out of state, so we post videos on our puppy website so they can see their puppies!

Make an on-line slideshow at www.OneTrueMedia.com

This next one is when Angela was 9, taking a Jr. Handler class. She was the youngest

in the class.

Photo and video editing at www.OneTrueMedia.com

This last one is when Angela was 11, taking a Jr. agility class with her dog Dudley. This was her first time ever in the agility ring!

Make photo slide shows at www.OneTrueMedia.com

Angela says it all

Home Alone

These people were always finding water all over their pool deck and furniture every time they came home after being away for a few hours. They thought the neighborhood kids were watching for them to leave and using the pool. However, they could never catch them doing it. So, they
set up their video cam and left. This is what they found out.

Wow!

Ok...really, this is a PANTENE commercial. Or is it? It tells the story of a deaf girl learning to play violin. This won a silver medal in the 2009 NY Film Festival.

Answer of the day

"Brown Eyed Blessings" asks: "I'm the mom of a 2 year old with down syndrome. I'd like to know what you wish you'd known when your daughter was a toddler. What would you have focused on? What do you wish you hadn't worried about? That type of thing. Thanks! :)"

As far a what to focus on...focus on LIVING. It's easy to get carried away, and feel like EVERYTHING has to be turned into a mini therapy session. Don't worry, it doesn't. And, when you feel like you've just had ENOUGH, and want to skip a session, that's OK! Take a break!

As your child gets older, find the things he likes, and pursue them. But, whatever you do, KEEP HIM ACTIVE! As our kids get to be teenagers, it is SO EASY to let them be couch potatoes. Granted, all kids with DS are different, but a lot of kids with DS become less active, but their appetite and metabolism stay the same. You really have no way of knowing what your child's build will be when he gets older. I've had a well-respected developmental pediatrician say to me at Angela's 10 year check-up, "She will probably always have trouble gaining weight." Three years later she's 60 pounds heavier, eating constantly, and like most teenagers, if given the opportunity will stay in front of the TV all day. But, I won't let her. No, she swims, she bowls, she's involved with SOS. Don't get me wrong, she has plenty of down time, but not too much. She is BUSY! Here's a link about how we keep Angela active.

I posted this in June, in honor of Angela's 13th birthday. I'm going to repost it here!

.................................

June 6th, 2009

13 years ago, at 11:06 a.m., the operating room was silent, except for the sound of a helicopter landing on the hospital roof. While the doctor's hands closed my open belly, hushed whispers

from the doctors and nurses could be heard from the corner of the room. Finally, from out of my view, the pediatrician said, "She's starting to get pink now. Lets get her ready to fly."

That first year was a scary year, yet amazing year. In those first days we were told you were different from us, that if you survived there were things you would never be able to do. But we held you, we loved you, and we promised you the world, if only you'd hang on a little longer. You were beautiful! Your big dark eyes studied everything, and though they told us you'd likely never be able to communicate, you produced your first sign, "eat", followed a few days later by, "more", I should have known right then what was ahead! LOL You got your first hearing aids and learned the importance of sound. Before we knew it, your first birthday was was here, and for the first time I found myself thinking of the future. There were things I wanted to know! I wanted to know what you would be like at 3, at 6, 10....and at 13.

Your second year came with a few surprise surgeries, and the many hospitalizations to go with them. The feeding tube that went in, then came out, then went in again. They told us you might never walk. Too bad they didn't get to see all of us sitting in a circle in the living room cheering as you walked back and forth to each of us. They didn't get to see the pride in your eyes, or in ours. They didn't get to see my tears of joy.

Your third year brought a day I never thought I'd see. You started preschool! I cried that first time I put your tiny 20 pound body onto that HUGE bus! You were a signing maniac, and could say anything you wanted to say with signs. You started to read, and to run. You even started to eat and drink by mouth again. You were beautiful, with hair so long you could sit on it, and eyes that twinkled with mischief. You amazed everyone; teachers, doctors, but mostly us.

Your fourth year. You learned to feed the chickens and collect their eggs. You learned to drive your Barbie jeep all over the farm, and where the mother cats hid their new kittens. You taught your teachers to think outside the box that is Down syndrome, and that they didn't have to do things the same way they have for the past 10 years. You were different! Your diagnosis didn't mean the special ed. setting was the right one, so you went on to teach your regular ed. preschool teacher that "different" can be amazing!

Your fifth year brought Kindergarten and new friends. And even though it was bigger than you, you learned to carry your lunch tray. You stopped signing for the most part, and talked all the time! If only we could understand you. With a lot of changes in our family that year, you still continued to make great progress, more than anyone had ever hoped for.

Your 6th year brought 1st grade, reading, writing and math. You were the tiniest first grader ever! You loved going to school with your friends! Your speech took off and we were understanding you more and more. You were a shining star.

Your 7th year brought two moves, and it brought Dean. It also brought a long winter in the hospital, and missing all of 2nd grade. You loved your dogs, and your bedroom, or going anywhere with Dean. But mostly you loved music!

Your 8th and 9th year were unremarkable as far as medical issues were concerned. You continued to progress and flourish in school, which you loved!

Your 10th year brought us a scare we thought we'd never have to face, and set your motor skills back a bit. We were told you were a walking timb bomb, at risk of a massive stroke. That there would be no warning, that by the time we noticed anything it would be too late. Then we were told that was wrong, and then "Well, we just don't know." We were so confused! Whatever had happened caused you to loose the ability to run, and your walk became labored and you tired easily. Nobody seemed to know what to expect. But through it all were your shining eyes and smile! Still happy with every new person.

Your 11th year brought your Make A Wish trip, which brought some of us (You, me, Dean, and Tyler) to Give Kids the World in Florida. A magical time for all of us, and a time for us to celebrate the fact you were still with us. We made so many memories together on that trip! Even with all that, during that year you learned to swim, and amazed me with your tenacity.

Your 12th year brought horseback riding, pierced ears, braces and gold medals in Swimming. You started performing on stage, and we were so proud of you! Your comfort on the stage, in front of a crowd proved to those who didn't know you that even those who are "different" can be performers.

And here we are. You're 13 years old today. I can still smell the baby you. I can still feel your fuzzy hair. I can still feel the touch of your chubby little hands. Today I looked at the creases on your palms, and remembered my fascination with them when you were a baby. Those creases that told us the truth of your diagnosis. But I also remember how you proved everyone wrong. That Down syndrome wasn't the curse they wanted us to believe. Down syndrome was our blessing. I remember wanting to know what you would be like at 3, 6, 10...and 13. If only all new parents who've been told their baby has Down syndrome could see ahead. If only they could see everything would be o.k. That there is life after diagnosis. I wish that all parents could have a child just like you Angela...they would be so blessed.

Best eye exam ever!

Who can say that about an eye exam???

So, I've been waiting for my insurance to kick in so I could get several long-overdue things taken care of, one of them being an eye exam and getting new glasses. Mine were a couple years old and badly scratched. (stuffing them in my motorcycle hip purse will do that.)

Let me back up a bit. Three years ago I was evaluated for lasik eye surgery, and was told I was a "perfect candidate". Not only that, but if I hurried and got it done before I needed reading glasses, I could have mono-vision done. That's where they slightly over-correct just one eye, and leave the other one alone. Pretty much the same thing that's been done with Angela's eye glasses. Anyway, they said, "But, get it done quick because you're almost 40 and will need reading glasses soon, and then the surgery won't work."

Now I'm 42

People have been telling me, "I bet you'll need reading glasses this time." and to be honest, I've been obsessively testing my ability to read fine print. LOL

Well, I can't really afford the eye surgery, which is the only reason I haven't done it. But I'm tired of wearing glasses. I used to wear contacts 10 years ago, but with my astigmatism my corneas were too steep for the contacts to be very comfortable. However, contacts have changed a lot since then so I had decided I would get fitted for contacts at this appointment as well.

So to the eye doctor I go. I get to there, and wait for a full half our past my scheduled appointment time, because there is some guy ahead of me and I can hear him asking 5.,000 stupid questions. But hey, they're HIS eyes, and he wants everything right. Meanwhile I had an appointment AND I have a class starting in 45 minutes. I purposely scheduled this appointment so I had time to get to class right down the street.

Finally the woman doctor comes to get me. As she shakes my hand she says "Have you ever worn contacts?" "Ummm yeah, actually, thats one of the things I wanted to do today, was get fitted for them again."

"Don't waste your money!" She says. Then she starts talking a million miles a minute: "I'm not going to charge you for the fitting, because I kept you waiting so long, AND I'm going to give you two free pairs of contacts, one for astigmatism and one without because some people say the astigmatism ones aren't very comfortable. THEN, I want you to go get evalulated for lasik."

Ok...she hasn't even LOOKED in my eyes yet!

I tell her I was evaluated a couple years ago, but couldn't afford the $1500 for one eye.

"Oh...the cost has come down so much since then!" (finally she's looking in my eyes.)

"Uh huh...uh huh....yep....uh huh....Your vision hasn't changed AT ALL since your last visit! It is probably the most stable I've seen for a 42 year old."

So, I'm thinking she's getting kick backs from one of the lasik eye places. "Which place would you recommend going?"

"Oh, you can go to any of the big ones. They've all got pretty much the same equipment. LasikPlux...Vision Centers, they're all good. I have heard that Dr. Whiting is no longer with LasikPlus, you could try him too. I've heard he's the lowest in town. But really you can go to any of them."

This reminds me of another question to ask her, "What do you think of Latisse?" She gets all excited, "Oh! Look at my eyes! I've been using it for three months!" She looks me right in the eye and gives big blinks. Her lashes look fantastic! "So, do you want me to write you a script for that?"

She gives me a pair of contacts to try on. They feel great, (and will last a month to 6 weeks!) and she also gives me another pair to bring home. Then she hands me free solution and cleaner, etc, along with a prescription for Latisse.

I walked out of there wondering what in the world just happened. Seriously all of that was in a 15 minute visit. And... I DIDN'T PAY A SINGLE DIME! I'm loving my contacts, but i know I'd love lasik even more. Dean just paid for my major surgery 2 months ago, there's no way he's not going to pay for this one. But..hmmm....Ok I need to ramp up my other business!

So, that was my really great eye exam yesterday.

Got my...

Got my tools...

Got my rain coat...

Got my mud boots...

Gonna go build me an ark! That's what you do when it's rained for two solid weeks, right?

Question of the day

If you could have any superpower, which one and why?

Ok, I've thought about this one since it was posted 3 days ago, and I finally figured it out. I want to be "Paper thin woman"!

No, seriously, think about it. First of all there is the obvious benefit of being "Paper thin". What comes with being paper thin? Well, light as a feather, of course.

Now, think about this: How many times have your kids been in their rooms with the door shut, and it's VERY QUIET in there, and you reeeeaaaaly want to know what's going on in there but you don't want to disturb the peace? I mean, they could be playing a game on their own (gasp) or reading a book on their own (bigger gasp) or.....(biggest gasp of all) SLEEPING! Ahhhh but "Paper Thin Woman" could slip under the door unnoticed and find out exactly what's going on! However, if you are mom to teenage boys, slipping under a bedroom door unnoticed is not recommended! I'm just say'in......

Or, what about the staff lounge at your kids' school. Don't you sometimes want to know what they're saying about your kid? You'd have to be prepared to realize that not everyone thinks your kid is cute though. I don't think everyone at Angela's school thought it was "cute" when she was walking around calling everyone "Dumbass". WE thought it was kinda hilarious, though of course we didn't TELL her that!

I bet Paper Thin Woman could unlock doors, kinda like you do with a credit card. (does that even really work?) I'm thinking I must have been having dreams about unlocked doors, because it seems all I can think of for Paper Thin woman to do is get to the other side of closed/locked doors. LOL

What else could paper thin woman do? Well, she could fly anywhere, pretty much. Just fold her up and stick her in an envelope, and she and Flat Stanley could travel the world together.

So, join in here with me. If I were Paper Thin Woman, what are some other things I could do, that I can't now as "Not-so-paper-thin Woman"?