Blogging about life and raising our five kids with Down syndrome.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Friday, December 25, 2009

Taylor Lautner and Miley Cyrus

*disclaimer* I have not seen "New Moon", nor have I seen "Twilight", nor have I ready any of the books, and have no intention to, mostly because I just don't have time, but also because the whole vampire thing just makes my spirit crawl. That said, this post is about a phenomenon that I've seen the past few months.

This whole thing about the TEEN hear throbs is interesting to me. Lets look at it from a couple different perspectives, shall we?

A year or so ago, there were pictures out of Miley Cyrus that everyone agreed were a bit...umm...suggestive? She had just turned 16 at the time, and is now 17. The celebrity gossip was abuzz about how in the world her dad let that happen, how awful that she posed for those pictures, and other comments along those lines. Whenever she's in the news, all you hear are comments about the fact she is far more "grown up" in many ways than she should be.

Now, lets look at Taylor Lautner. The 17 year old star of "New Moon." (he'll turn 18 in February) He was previously seen in "Twilight". Now, go google images if him, even those at 15 and 16. They are not exactly innocent!

Hmmmmmm....

I'm shocked by what I hear grown women (many well over 40!) saying about Taylor. They make no effort to hide their attraction to this KID. He's SEVENTEEN. Google blogs and you will find even more grown women posting about their attraction to him.

I wonder, if men wrote similar blogs about Miley Cyrus, what would people say? Would they call them dirty pigs, posting about their sexual attraction to a CHILD? Would they be labeled as potential predators?

I don't get it. I don't understand the double standard at all.

What are your thoughts?

Project Red Shirt

This sounds like a great idea to me. Lets do it.

Project Red Shirt

If project red shirt is new to you, read below how it went for a man...

"Last week, while traveling to Chicago on business, I noticed a Marine sergeant traveling with a folded flag, but did not put two and two together..

After we boarded our flight, I turned to the sergeant, who'd been invited to sit in First Class (across from me), and inquired if he was heading home.

'No', he responded.
'Heading out?' I asked.

'No. I'm escorting a soldier home.'

Going to pick him up?

'No. He is with me right now. He was killed in Iraq , I'm taking him home to his family. '

The realization of what he had been asked to do hit me like a punch to the gut. It was an honor for him. He told me that, although he didn't know the soldier, he had delivered the news of his passing to the soldier's family and felt as if he knew them after many conversations in so few days.

I turned back to him, extended my hand, and said, 'Thank you. Thank you for doing what you do so my family and I can do what we do.'

Upon landing in Chicago the pilot stopped short of the gate and made the following announcement over the intercom.

'Ladies and gentlemen, I would like to note that we have had the honor of having Sergeant Steeley of the United States Marine Corps join us on this flight. He is escorting a fallen comrade back home to his family. I ask that you please remain in your seats when we open the forward door to allow Sergeant Steeley to deplane and receive his fellow soldier. We will then turn off the seat belt sign.'

Without a sound, all went as requested. I noticed the sergeant saluting the casket as it was brought off the plane, and his action made me realize that I am proud to be an American.. "

So here's a public Thank You to our military Men and Women for what you do so we can live the way we do.

Red Fridays.

Very soon, you will see a great many people wearing Red every Friday. The reason? Americans who support our troops used to be called the "silent majority." We are no longer silent, and are voicing our love for our country and home in record breaking numbers. We are not organized, boisterous or overbearing.

Many Americans, like you, me and all our friends, simply want to recognize that the vast majority of America supports our troops. Our idea of showing solidarity and support for our troops with dignity and respect starts this Friday -- and continues each and every Friday until the troops all come home, sending a deafening message that every red-blooded American who supports our men and women a far, will wear something red.

By word of mouth, press, TV -- let's make the United States on every Friday a sea of red, much like a homecoming football game in the bleachers. If every one of us who loves this country will share this with acquaintances, coworkers, friends, and family, it will not be long before the USA is covered in RED and it will let our troops know the once "silent" majority is on their side more than ever, certainly more than the media lets on.

The first thing a soldier says when asked "What can we do to make things better for you?" is.. "We need your support and your prayers." Let's get the word out and lead with class and dignity, by example, and wear something red every Friday.

PLEASE, invite your friends from school, church, or anywhere! Get your communities involved and tell everyone you know.

Thursday, December 24, 2009

A Christmas Gift


Sometimes, as young adults, we put our parents through some difficult crap. It's not until we're near middle aged (and I'm not there yet, right? RIGHT?) and have teenagers and young adults of our own that we truly understand the anguish we caused our parents, mostly our mothers. Personally, I owe my mom a lot of apologies from about 1983-1994. And maybe a few from 2001-2003, because even though I was an adult those latter years, I know my mom still worried about me. I know she went to bed some nights praying that I'd be o.k.

I had only one real wish this Christmas...To know that ALL of my kids were safe, warm, had food and a place to sleep. For reasons I can't go into here, I don't always know that is the case for all of my kids. With the exception of Angela, they're all adults now. Doing their own thing, and trying to find their own way in this world.

Last night, after talking with good friend, I went to bed in tears because of MONTHS of worry. Not a few days, not a couple of weeks, but months. I prayed my Christmas Wish.

My house phone rang at 6:40 this morning. I stumbled to the phone, incoherent, but didn't make it before whoever it was hung up. The caller ID came up as a private number.

A couple hours later I got into the car to find I'd left my cell phone in there last night. There was one missed call...just one minute later than the house phone call...again a private number so it was the same person. That still, small voice told me who it was, even though I had no idea if it was true or not. And in reality it doesn't matter if I was right or not...in my spirit...I knew that today I would hear something.

About 3:00 this afternoon my prayers were answered in an unusual way. God gave me my Christmas gift.



Wednesday, December 23, 2009

Prayers for an amazing family!

Derek and Renee Loux are adoptive parents of MANY, including 3 little guys through Reece's Rainbow. I have never met them in person, but I've been following their blog for many months now, as they began their journey to bringing the boys home. At the same time they were working on bringing home two girls from the Marshall islands, and later in the summer brought home their biological sister.



This morning, December 23rd, Derek was tragically killed in a car accident. Derek was an amazing man, with a heart for God like no other. Please, lift the family up in prayer today. Derek leaves behind his wife Renee, and their 11 children.




Tuesday, December 22, 2009

It's been a long day!

Angela was up ALL NIGHT last night, in tears that her throat hurt. Anyone who knows her, knows that real tears mean A LOT of pain, as she has a very high threshold. Ok, so her throat hurts. How do I know it's a complication from last weeks surgery, or just a sore throat? Well, she hasn't ever stopped complaining since surgery, so it's not "new", it was "worse".

So I waited until morning and called her doctor in Boston to get his opinion, which was to bring her into the ER because there are a couple potential complications.

We did. We were there for 4 hours. We found out she doesn't have a perforation in her esophagus, and that her lungs are clear. And that's all we found out.

There was a lot more discussion, but I'm too tired to type it all out, and it's lots of big medical words.

We came home and I hit the couch for a nap. Aside from being up all night with Angela, I've been having problems with my ears since we flew TO Boston. (Eustachian dysfunction) and my ears have never unplugged. I haven't been able to hear out of my right ear since the 13th, but no pain at all. So I took my nap, and when I woke up I felt like my right ear was going to explode. It was 6:30, so my option was to head to urgent care, or wait it out and risk it being really bad at midnight. (or making it to morning without any problems!) I opted for urgent care.

Fortunately I was in and out pretty quickly. Unfortunately there's nothing they could do with me. My ear isn't infected, but the drum is severely retracted and the doctor said it will probably tear overnight. Lovely. It'll hurt like the devil and then I'll be able to hear again. The doctor did say the ENT's are in the clinic tomorrow, and because most people don't like to schedule appointments this close to Christmas there's probably an opening. If I'm really lucky I could get a tube put in my ear tomorrow. I do know, at the very least, I need tubes before the Bulgaria trip.

Dean finally went back to work today after 9 days of the flu and 103* fever.

Seriously, it feels like the plague has hit our house!

I am not done Christmas shopping. I haven't gotten all of Angela's teacher gifts done. My Christmas cards have been reworded to "Happy New Year", and I need to do laundry in order to pack Angela's bag to spend some time with her dad's side of the family and her big brother Robbie who will be in town with his kids! There are dishes in the sink, and I'm just too tired to do anything. Maybe tomorrow....


Monday, December 21, 2009

Let the scheduling conflicts begin!


When my boys were little, and playing sports, I went to EVERY game. For my own personal reasons I have issues with missing my kids' games. Even when Robbie and Noah were playing on teams in the same age group but different teams...on the same day at the same time....I went to half of one game and half of the other. I didn't miss them. And when Angela was in the NICU 75 miles away, I made sure to be home for their baseball games. Yes, it caused me some stress, but it was well worth it. And, like I said, I had my reasons.

Angela has been no different. I've never missed her events. Practices, yes plenty, but not games. Not that she's had a lot of them! Usually it's two big tournaments or meets per sport for Special Olympics so it's not too tough to get to them.

But now that she's in 7th grade, she's old enough to participate in State High School league sports. I didn't let her play soccer, because we were really unsure what her energy level would be like after a day of school. She's actually done pretty well, so she has driven me CRAZY with all the talk of Floor Hockey! Eye eye eye, if I hear "When does Floor Hockey start?" one more time, I'd pull my hair out.

Floor Hockey practices actually started the day we left of for Boston, so she could hardly wait to get back and go to her very first practice today! They practice almost every day after school, and are bussed to practice, and then home. (How cool is that?) I couldn't remember what time she was supposed to come home and was checking the schedule, when I glanced at the GAME schedule.

OH NO!!!!!!

Every one of her games are on Mondays and Wednesdays...WHEN I'M IN SCHOOL! I won't make a single game! This can't happen. I think I was excited for her to play floor hockey as she was, and now I'm going to miss all the games!

I checked my school schedule and I don't see another class I could move to at least one of the days. I'm so bummed!!!!


Sunday, December 20, 2009

Update Sunday

Angela is on a weight loss program, and it's called "Esophageal Dilitation". She doesn't want to eat. She's drinking TONS though. So much so that I'm headed out to buy some Boost drinks. (She doesn't like Pediasure.)

She's still napping, but her low temp is gone today. She's still complaining a lot about her throat. I hope she can go back to school tomorrow. She really misses her friends. It's taking her a long time to bounce back from this relatively simple procedure, which makes me very suspicious about the whole aspiration thing. She has to relearn how to drink with this new, wider esophagus. She's been drinking a certain way for many years, and that way may cause more problems now that the dilitation is done.

Saturday, December 19, 2009

We're home!

Tyler's flight got him home at 11:30 yesterday morning. A friend picked him up at the airport and we haven't seen him since. ;-) (I guess he missed his friends! LOL)

Angela and I, on the other hand, flew through Atlanta. Did you listen to the weather at all yesterday and hear about Alanta's mess? We were stuck down there for a few hours, and finally made it home at 5:00 yesterday. We were wiped out! Angela was in bed for the night at 7:30, and seemed happy to fold herself up in her own bed.

So how is Angela doing? Well, the doctor told us swelling might be an issue for a few days, and I hope that's all that's going on right now. Swallowing is definitely a problem right now, and I'm about 80% sure she aspirated a couple of times since Thursday. I say 80% because it's been a long time since I've heard that sound. If she still sounds raspy on Monday I'll bring her into our regular doctor to listen to her.

My plans for the weekend are to get some stuff done!!! Thankfully "cleaning" is not on that list! But, the tree has been up for a week, and is still completely bare. It doesn't even have lights on it. I have Christmas cards to get in the mail, but no picture to put in them yet. And in order to get the picture I want I have to get 2 of our 4 dogs groomed. That's several hours of work right there. Oh, and Christmas shopping to finish. Dean is also sick with the flu so I'll be trying to make up for some of the pampering he missed all week!

Thursday, December 17, 2009

Angela conducts the Boston Pops!

We call it the Angela phenomenon. Everywhere she goes, things just HAPPEN. When she was 2 1/2 she was in a national newspaper magazine that went to every house in the country that subscribed to the Sunday paper, her picture the full size of the page. She has been in our local state newspaper a couple of times, mentioned on the radio a time or two, and two appearances on the Jumbotron in Time Square. Then there are all the times when she's just GOTTEN something. I know most people wouldn't consider being the recipient of a Make A Wish "lucky", but Angela sure felt special! Anyway, it's very strange, but it keeps happening to her. 

Today was another one of those days.

We were just getting ready to be discharged from Boston Children's when the Child Life person said the Boston Pops would be playing downstairs, and would we like to come? So we went, injured animals in tow.

When we got there, we were asked if Angela wanted to be their guest conductor! We sat through the show, including Emmy Rossum, star of Phantom of the Opera who came to Boston just for this performance.


We sang some more songs, the it was Angela's turn. As always, Angela put on a good show in her striped pajama pants and "Boston" t-shirt! LOL Conductor Keith Lockhart took her hand and helped her to her place on stage.

She took her conductors stick, and turned to the orchestra, "Ready guys? 1....2....3 Hit it!" and they played.


At the end she took a grand bow....twice. ROFL



Yet another "Once in a lifetime" moment for Angela.

Wednesday, December 16, 2009

Some pictures from Boston

I sure don't like the pictures my cell phone takes. Unfortunately I didn't think to bring my cameral along! Anyway, my friend Kathleen picked us up and brought us to the Boston Commons (I think that's where we were! LOL) and we really had a nice time. Here's some pictures from the night.

The horse-drawn carriages. This was around 6:30 at night, and the horses looked exhausted.


The tree in Boston Commons. I could only get part of it!
Looking down Boston Commons (I think! LOL) The pictures don't do it justice.
"Cheers" Need I say more???




The Art of Manipulation

A couple days before we left for Boston, Angela was given a stuffed dog that she named Ruby (just like our real Rubee) and she decided Ruby should come to the hospital with her. Then, on Tuesday night my friend Kathleen gave her another dog that looks a lot like our Zurri, so Angela gave it that name and decided Zurri should come to the hospital too.

Some time last night both dogs were injured. According to Angela they'd fallen of the jungle gym and each broken a leg. (I made the mistake of calling them "arms" and was quickly reprimanded because, "Dogs don't have arms! DUH!"

So we head to the hospital, and in the pre-op room Angela informed every nurse, anesthesiologist, nurse's aid, and her GI doctor that her dogs had broken legs. When she was given her bracelet she insisted that her dogs get one too...and they did!

When surgery was done, and Tyler and I were escorted back to the recovery area, there was Angela and her dogs. And, much to our surprise, each dog was supporting a REAL cast. One red, and the other green in honor of Christmas.

She always wakes up from anesthesia with a smile! (but shivering like crazy, which she did for the next several hours.)


And look! Two casted legs! (and these are real hard casts!)


Later, when we got up to the hospital room Angela was insisting that her dogs should have IV's like hers. Yeah...whatever! After awhile Angela was getting agitated and Tyler and I were hungry so we gave her some alone time while we went to find the cafeteria. When we came back, we found each dog did, indeed, have a complete IV set up.


And yet, their care was still lacking! They didn't have EKG leads on like Angela did! The next thing I know a nurse walks in and starts putting "stickies" on them. Here she is telling the nurse EXACTLY where to put the leads.



To say that Angela has the art of manipulation down is an understatement!

Yep, it was tight!

So today's surgery was an endoscopy with balloon dialation of the cricopharyngeal muscle. When the doctor got the scope in there, the area was VERY tight, and he had a hard time even getting the scope in. He dilated it with the largest balloon they have, and we'll just have to wait and see how it works.

She's been drinking liquids today but doesn't want to eat anything yet. That's ok, because it's soft foods only until tomorrow, then we'll see how regular foods go.

If they go down fine she can stick with them. If they don't then she needs to stay on a soft food only diet indefinitely while we figure out what to do next.

All these years she's done a pretty good job of protecting her airway, but it's only a matter of time before she ends up getting very sick from aspirating food. When I told him how well the soft diet went a couple of months ago, he laughed. He said his main goal is to give her a good quality of life, which is to be able to enjoy food pain-free.

For tonight she is crabby and demanding. She's perseverating on wheelchairs for her stuffed animals and driving all the nurses nuts with that. I have a couple cute pictures to post but I left the cord for my camera at the hotel so I'll have to do that later.

Thank you everyone for your prayers and kind words this week. They mean the world to us.

Tuesday, December 15, 2009

Meeting MORE friends!

I tell ya what! Kathleen is THE sweetest person!!!! I met her online at The Doodle Zoo (a dog forum) a couple years ago. When I posted that we'd be in Boston and was anyone around with therapy doodles, Kathleen said she'd love to help us see some of Boston. Kathleen planned a great day for us, getting passes for the Children's museum, and while Angela and I were doing that Kathleen would take Tyler to the Aquarium.


Unfortunately the tests Angela had done this morning were under sedation, so by the time we got back from the hospital at 1:00, she fell sound asleep and slept until a little after 4. But Kathleen came and picked up Tyler so he could see some of Boston! He had a great time at the aquarium. I had given him enough money to get himself a souvenir, but he bought a gift for me instead. He is the sweetest kid! He brought me this beautiful glass dolphin. I know just where I'll put it when we get home.

When they were done at the aquarium they came back to the hotel and picked us up, and we all went to dinner together in Boston. We had a great time, and saw some really nice evening sights. The weather was beautiful for walking around (which is great since I hear tomorrow its going to turn ugly!) and we just had a really nice time! I have pictures on my cell phone that I'll post tomorrow.

Thanks so much Kathleen, for your wonderful hospitality!

Teaching

When Angela was born, a team of flight nurses quickly prepared her to be airlifted to another hospital. It was during that chaos that the attending pediatrician told her dad, and my parents, that she suspected Angela had Down syndrome.

A few minutes later, her dad and my parents came into the room I'd just been wheeled into after having my belly closed after the emergency c-section. My parents stood at the foot of the bed, and Angela's dad came to my bedside. "Is she ok?" I asked.

"She's fine." he said. But as he said it I glanced at my parents and saw a single tear rolling down my dad's cheek. Never in my life had I seen my dad cry before.

"No she's NOT! What's wrong!" I said.

Her dad struggled with the words to tell me, "Well, they think she might have a little bit of Down syndrome."

Just as I was saying, "There is no such thing as a little bit!" in walked the flight team, with Angela in an isolette. They removed her and placed her in my arms. I couldn't see her face, because they were bagging her to keep her breathing. All I could think to do was turn her hand over and look at her palm. At that single crease that held the truth of her diagnosis. There it was, in all it's glory, deep and plain as day, leaving no room to question if it was a true transverse palmar crease or not. It was, I saw it.

There is one picture of me that day, holding a very tiny Angela (just 4 lbs) with a temperature strip stuck to my forehead and a very dazed look on my face. I don't look like I was crying, and I honestly don't remember if I was. I'm looking into the camera like a deer in headlights. I wonder who took that picture? It wasn't my parents, or Angela's dad. Maybe a nurse? I don't know.....

Anyway, I only held her for a minute before they took her away, loaded her onto a helicopter, and flew into tornado weather to another hospital where the NICU was. Angela's dad followed in the car, and my parents were left standing there with me. Not sure what to say. How do you comfort your daughter in a moment such as this?

"Now it all makes sense." my mom said. "All those kids with special needs you were always bringing home. All those babies you noticed that you didn't know had Down syndrome because you were just a kid, but I knew. Yes, it all makes sense."

She went on. "She's here to teach. She's going to teach everyone along the way that what they thought, and what is supposed to be, is wrong. It doesn't matter who they are, she's going to teach them."

Angela has held true to that prophecy.

First, she taught me about control. I don't have it. You don't have it. None of us have it. We're not in control of our destiny. He is. We can try to manipulate it all we want, and yes, we have free will, but our destiny has already been determined. Angela was destined to be my child, and I was destined to be her mother.

Over the years Angela has taught teachers and educators in general to think outside the box that is "Down syndrome". That not all kids with DS are alike, that there is no such thing as, "Oh they're all so sweet!" Yeah...WHATEVER!

She has taught me advocacy. I *thought* I knew what the word meant, and I thought I was pretty good at it with my boys. But when Angela came along I discovered what the word really meant, and that I had a lot to learn. By the time Angela was 3, I was changing the way our small town school district approached special education, and by the time she was 5 I was changing yet another. And when she was 7 I learned I needed to advocate not only for her, but for me, as a mother, too.

But the biggest area of teaching Angela has been involved in is the medical system. She has broken all their rules. The rules say, "When you have a stroke, it looks like X on the scans." But in Angela's case, the X isn't there, but all the symptoms area. The rules say, "When you have a seizure, it looks like X on an EEG." But Angela broke that rule too, and after two years of my questioning seizure activity, and two years of normal EEG's, her neurologist finally got to see one for himself. "Treat the symptoms, not the EEG" is the rule to follow, not the other way around.

Angela taught her primary surgeon that the rules of wound healing were meant to be broken, and that Angela has her very own timeline.

Angela has taught many doctors that the old phrase "When you hear hoofbeats, think horses, not zebras" does not apply to her...... EVER. She is full of zebras! In fact, I'm pretty sure she's breeding them somewhere. I have learned that when a doctor says something like, "Well, in very rare cases....." That I should start researching those cases, because that's where we're going to end up.

But I have to say, the most amazing thing Angela has taught all around her is JOY. Pure, unadulterated JOY. You can see it when she sits down to an order of french fries, and you can see it when she hugs someone she loves. It is infectious. She melts into you like a warm knife in soft butter, cutting straight to your heart. She delights in thew world around her like nobody I have ever met. Today, after she threatened to arrest her doctor, I watched her, heavily sedated, grin from ear to ear as a nurse appeared out of nowhere with a set of toy handcuffs. The smile was pure JOY.

Yes, I get frustrated with her, just like every mother does. Yes, I get tired of the constant repetition of her favorite game (jail!) or her favorite topic each day. Yes, I want to pull my hair out when she swears or sticks out her tongue for the 500th time that day. But when and opportunity arrises to watch Angela experience something I know she's going to enjoy, I'll go to the ends of the earth to make sure it happens. Because seeing her delight in something like watching a cousin's wrestling match or basketball game, or a dog show, or riding a roller coaster....anything that makes her clap her hands in excitement....does something to my heart that nothing else even come close to duplicating. She has taught me to seek joy in other areas as well.

So, as my mother prophesied 13 1/2 years ago, Angela has indeed taught people a thing or two along the way.




Update

So, the testing today showed definite problems with Angela's swallow. All the muscles in the pharyngeal area are very uncoordinated, and they just kind of do their own thing, none of them in unison. The fact she hasn't been aspirating constantly is nothing short of a miracle! However, watching her face, (hard blinks, watering eyes, closing her eyes completely as she swallows, and also patting her chest, caughing) and watching the monitor at the same time you can see what's happening in there and when.

But after her swallow, once the food gets past the pharyngeal area, her peristalisis looks pretty good! A little on the weak side, but well coordinated. It's the upper stuff that's the problem.

When she drinks liquids there are some spasms happening in the area of the epiglottis. When she drinks viscous liquids (so thickened slightly) there is a spot just BELOW the cricopharyngeal muscle that suddenly tightens.

With solids, as she's CHEWING, that same area just below the cricopharyngeal muscle spasms and tightens, and as she swallows the solid bolus it closes almost completely, yet her epiglotis appears to open. That means food or liquid that has stacked up there can dump right into her lungs! She was able to tell us when she had food stuck, which corresponded with what the doctor was seeing on the computer sensor.

Tomorrow we're going to try dilitation. It may not work, but it's at the bottom of the "least invasive" scale, and something pretty easy to try. If it doesn't work, we'll have to figure out what, if anything, is our next step. Even though she has remained free from aspiration pneumonia for the past 3 years, everyone is stunned. Solid food sits right in front of her airway and liquids splash around the solids and into her airway. It is NOT safe to eat or drink this way, so going back to a gtube, for the rest of her life, is a very real possibility right now.

Monday, December 14, 2009

Meeting Friends! Pt 2

Last night my friend Lisa and her family drove all the way over here to meet us. We're SO excited to finally get to meet them. I've "known" Lisa from the downsyn forum since shortly after her little guy Daniel was born. He's 4, and his birthday is the day after Angela's. I thought I took more pictures last night, but I guess not! I'm sad I don't have pictures of Angela and Elaina, or Lisa's husband Dan, because Angela wanted him to come home with us. LOL










Checking out the room


Love the beds in our hotel. I've slept like a ROCK!


What we know we don't know

Today started out with an early appointment with the Pre-op team at Boston children's, and meeting with the anesthesiologist who will be doing Wednesday's surgery. Well, the appointment was SUPPOSED to be early, except that when I set my alarm on my Ipod, I forgot about the time change. I set the alarm for 5:45, and since Angela was NPO (aka nothing by mouth) sent Tyler down to sneak breakfast in the lobby. I got out of the shower and happened to glance at a small clock I hadn't noticed before......7:00!!!!!!! We were supposed to BE at the hospital at 7:00! I quickly called and they were really nice about it, just told us to get there as soon as we could.

We made amazing time, and walked in for our appointment at 7:29. That series of appointments took until 10:00, and I debated what to do for the 3 hour wait until the next appointment at 1:00. Whatever it was, I had to keep Angela away from food! We finally decided just to go back to the hotel and play Playstation. Ok...Angela played PS, and Tyler and I napped. ;-)

The next appointment was interesting because what they were planning on doing wasn't going to give them any information about what's going on. It would let them see some of her structures though. And, she did aspirate one swallow of the barium. Interesting, as we haven't seen aspiration in YEARS. So, now we know liquids are still a bit of a problem. For those who are new here, Angela had a gtube until she was 3 1/2 because of her inability to swallow liquids safely.

That done, it was time to EAT. By this time it had been 19 hours since Angela had eaten. Unfortunately the place we found to eat IN the Children's hospital, didn't have kid food! I don't know if there's another cafeteria here (I'll scope that out tomorrow.) but this place was not kid friendly at all. The only thing that had that Angela would touch was bread and Mac & Cheese. Only when we got to the table she wouldn't touch the mac & cheese. Finally I tasted it and discovered why. It had curry in it. Yeah..umm...not something Angela will eat. She ate half of my very tasty turkey wrap instead. (mmmm...I can still taste it, it was awesome!)

3:00 was the appointment we've been waiting for. Our meeting with Dr. Sam Nurko. First of all, what a very nice man! I guess you have to be if you're going to be working in a children's hospital, but still.

I had a whole list of questions with me, and found out the majority of them were irrelevant. Why? Because I haven't found anyone to talk to who has Cricopharyngeal Achalasia (which is caused by problems with the Upper Esophageal Sphincter, or UES) The only people found have Achalasia caused by the LES (Lower esophageal sphincter). While the disorders have similar names, they are completely unrelated. The risks of the two are very different.

So, for Angela, she has no greater risk of Barret's Esophagus (cancer of the esophagus) than anyone else.

Cricopharyngeal Achalasia is usually seen in very young infants as a birth defect of the cricopharyngeal muscle, which they usually outgrow. Or in elderly patients after a stroke or other neurological event. Angela's case is highly unusual BECAUSE of her age. While we believe she's probably had this since she was very little, why hasn't she outgrown it? Which leads the doctor to believe it was caused by whatever "neurological event" Angela has had.

Botox is often used in the achalasia of the LES, but they don't like to use it for Angela's form because it can affect the ability to swallow.

This problem was NOT caused by the nissen! Damage to the vagus nerve would have affected the LES, which is smooth muscle. The UES is striated muscle tissue, and controlled by the special swallowing mechanism, and not any one specific nerve. Very different from what the doctor at Mayo told me.

Tomorrow's manometry testing will tell us alot! First, she'll be sedated, and they'll place the manometry probe nasogastrically (through her nose then and down her throat into her esophagus.) then they'll wake her up. Once awake, I'm not sure exactly what they do, but the sensors will tell us exactly what area isn't functioning right when she eats solid food.

Assuming it shows what we expect it to, she'll have dilitation on Weds. She'll be put to sleep, and they'll go down with an endoscope, then use a balloon device to stretch out that area. Then she'll be woken up, and will stay overnight in the hospital so they can watch her eat and make sure A) the problem is improved and B) she doesn't have some new problem. If the dilitation works, it will last anywhere from a couple of weeks to a few months before it will need to be repeated. There's a "thee strikes" rule with this procedure. Three times and it doesn't work, and it's time to move on to other treatments.

About 50% of the time the dilitation doesn't work, and they need to do a myotomy (remove or separate the muscle) instead. That surgery is a BIG DEAL! And really...I think I'd have her go back to a g-tube before doing that surgery. We really didn't discuss this option any further, because we need tomorrow's testing, AND...I just don't want to go there right now. The biggest problem is this muscle works with the larynx. Remove or alter it and you will loose or seriously damage the voice.

For now, we're looking to tomorrow (Tuesday) once the tests are done, we're headed to the Boston Children's Museum for some fun time, while a friend of mine takes Tyler to the Aquarium. I'm sure both kids will have a lot of fun!




Sunday, December 13, 2009

Meeting Friends!

We're so excited! Remember my post a couple days ago about little Zhora? My friend Lisa has been praying and fundraising for him. He is almost identical to her Daniel! Anyway, we get to meet them tonight!

Lisa and I have "known" each other for years on downsyn.com, and I missed the opportunity to meet her this past summer when the National Down Syndrome conference was held here in Boston. So, here's our chance!

Now we just need to find a good kid-friendly place to eat.

We're here!

I've been up since 3:45 this morning, and I got Tyler and Angela up at 4:00. Our flights were mostly fine, except for the last 45 minutes. There were no snacks served on either flight. I can understand the flight to Milwaukee, since you barely have time to get in the air before you're descending again, but from there to Boston? Plenty of time! And, a note to AirTran, my kid is COUNTING on those snacks getting served since that is kind of like being at a restaurant! Needless to say, she was not a happy camper, and might possibly have taught the little girl behind us a few new words!

So we landed, and since we hadn't yet eaten in the 7 hours we'd been up, AND Angela hadn't had her morning meds yet (needs to have them with food.) Well, lets just say that is a bad recipe and all of Boston Airport's Burger King got to hear about it. Thankfully once all of us were fed, and Angela had her meds, things improved very quickly!

We've been in our hotel room about 45 minutes, and both Tyler and Angela are out cold. Time for me to take a nap too! Toodles!

Friday, December 11, 2009

reduced to tears

Angela went to her dad's tonight, which gives me some time to pack for Boston. Among the items on the packing list, are two large envelopes that came home from school today. One from her homeroom class, and the other from her friends in the DCD classroom.

Angela isn't going to see these until the morning of surgery. Something to help get her mind off the anxiety. Know what I mean? But that doesn't mean I couldn't take a peek myself.

And here I sit, reduced to a puddle of tears from the words written by all of her friends. I won't be able to read them out loud to her without bawling. Good thing I'm bringing Tyler along!

Baby 19 arrives! Prayers needed


I know a lot of people can't stand the Duggars, and then there are people like me who are fascinated by the family. Do I agree with everything they do? It doesn't really matter, does it? It's their life to live the way they choose, and...you have to admit...it's fascinating watching how their family functions!

Anyway, Michelle Duggar delivered baby #19 by emergency C-section at 24 weeks. Michelle was airlifted to an Arkansas hospital with gallbladder problems, and is still having problems. And, obviously, the baby is going to need many prayers. That's a very early premie. (the newborn in the picture is baby #18 who was born last winter.)

I have to admit, that I've had a secret...not sure what to call it....almost "hope" maybe? That this baby would end up having DS. Not because I'm wising anything bad on the family, because I don't think having a baby with DS is a bad thing. But because I know they'd be an awesome family for a little one with DS, and I'd love watching a child with DS thrive in the environment of a zillion siblings, on TV, for all the world to see it's not a bad thing. Besides, the odds are stacked for a baby with DS with 19 kids!

I guess it doesn't matter if you like the Duggars or not. They still need prayers for Michelle and her baby at the moment. And yes, I feel silly posting something about a "TV family", but, are they any less deserving?


HURRY! Quick! WIN!


Meet Zhora! Isn't he cute? He is nearly identical to my friend Lisa's little boy Daniel. So much so, that he's been on Lisa's heart for months. Why? Because Zhora is an orphan in Eastern Europe.

Lisa has decided to raise funds for Zhora's grant through Reece's Rainbow, by doing a give away of an 8gb Ipod Touch! Hop over here to Bethany's blog for the details. I see there are only EIGHT people who have put their name in so far! That's good for you, but sad for Zhora. I'd like to see if I can get 30 people to put their name in the hat! C'mon readers, you can do it! Lets help Zhora find a family! But hurry! The drawing closes on the 15th!


Thursday, December 10, 2009

Just a couple more days

The next couple of days are going to be BUSY!!!

First, I have a ton of cleaning to do. Fortunately I really only need to "pick up" because the "cleaning" part is going to get done by someone else. ;-)

I have to go in for some blood work tomorrow morning. So as of right now I'm fasting, which means eventhough I ate dinner, and I can have water, I'm starving and craving a chai latte. LOL

Angela social worker is coming tomorrow afternoon to do the paperwork for Angela's 2010 waiver funding. The paper work is so necessary but such a pain! I can't forget to praise God for it's availability to us though! Especially with the very scary stuff happening in the world of healthcare right now. Some of the changes being proposed for people with disabilities are beyond scary!

I also have to study for a test that I need to take either tomorrow night or Saturday morning. At the same time getting all the laundry done, and packing for Boston!

Saturday afternoon we'll be having ThankChristmas at my sister's. Then come home and (hopefully) get to be early, since we have to be at the airport at 4:30 Sunday morning.

We'll see if I get all this stuff done!


Thinking Back Thursday

I can't remember when this picture was taken. Angela was either 7 ot 8 years old, and now she's 13. Anyway, it's always been one of my favorites.


Wednesday, December 09, 2009

Snow Day

I bet a lot of blogs in the midwest are talking about the snow day they had today. Angela was NOT happy there wasn't any school! Not happy at all.

Dean discovered the motory on our snowblower was siezed up. Not a good discovery to make when there's 6 inches of snow on our very long driveway! So what does a good Minnesotan do? Go to Home Depot to buy another one! Not something we were planning on spending money on right now.

While Dean and Tyler were out clearing the snow, Angela really wanted to go out. She got all bundled up, grabbed her sled to pull around, and fell down in the snow. And there she sat. Her motor skills have really declined, and she's so unstable on uneven ground now. She did NOT want to walk around in the snow at all, and I was not about to pull her 113 pound self around in the sled! I think she lasted about 3 minutes out there before she came in and asked to play Wii instead.




Feeling defeated by the snow.


Birthday Boy

We celebrated Tyler's birthday last week. Hard to believe I have another child over 21!





Monday, December 07, 2009

Zero tolerance policy

You might remember my post last spring about Spirit week. Remember when I sent my kid to school wearing this?

Only to discover later in the day that I'd actually sent her to school wearing a skirt made of THESE?


Well, I thought it only right that I confess what happened today.

Angela got off the bus after school, came marching up the driveway, walked in the house and plopped her packpack and coat on the bench in the entryway. She said hello to Dean and Tyler (ignoring me, as usual.) then looked at me. "Wwwwwhere's my gun?"

GUN?

"Oh, I know!" she said, finger in the air like she just had a brilliant idea. She went into her coat...the one she had just taken off....reached into the pocket and pulled out a toy gun identical to this (except hers had an orange tip.)



It is no secret that Angela's favorite game is "jail", and that it is no fun to play "jail" without a gun in hand. Interestingly, yesterday Dean and I told her "No more jail!" because she's very obessive about it and driving everyone nuts.

I asked her why she brought the gun to school and she replied with an incredulous look, "Gah! To arrest C....Duh!"

I guess I need to start patting her down before I drop her off at school!





Tomorrows agenda


1) Stop coughing
2) Be able to speak full sentences without taking a breath every 3 words.
3) Generally feel better.
4) Get my voice back.
5) CLEAN MY HOUSE!
6)Get LAUNDRY done!
7) Plan a "real" dinner. It's been awhile. Any suggestions? (remember, cooking is NOT my forte! those "3 can meals" are about my skill level.)
8) Study for Wednesday's final.
9) Take a nap!

Round and Round and Round we go....

Here in MN, life is simple. Getting from point A to B is relatively simple.

And then came change, and it's called a "Roundabout".

I have to admit, the first time I ran into one, I wasn't sure what to do. I felt a moment of panic as I found myself going around in a circle and not really sure if it was ok to move over to the lane on my right while mid round. It took a few times going through my first few roundabouts to get it figured out. They do make sense....I guess....but I admit I'm resistant to change. ;-)

Well, Minnesota now has 76 roundabouts, with more on the way. Since they're so new here, and we Minnesota drivers are so sheltered, the Minnesota Department of Transportation (MnDot) has issued tutorials on the use of roundabouts.

I think MnDot should have taught required classes on zipper merging before adding roundabouts. We can only learn so many new things at once!

PRAISE GOD!

So today I had a huge anatomy test, then a retake of a test from a few weeks ago. AND THEN, because we'll be in Boston for finals week, I was going to have to take the final tomorrow. You know, one night to study.

I was supposed to spend all weekend studying, but I was so sick, I only got about 1/2 the studying done that I needed to do. I stayed up until 3:00 this morning, then got up at 5:30 with Dean, and felt horrible. I tried to go back to sleep without any luck.

Typically I would have spent the morning studying, but Angela had her pre-op physical, then run her to school. Still feeling like warmed over death I decided to take a long hot shower before heading to my class. While I was enjoying the steam room effect, I realized there was a huge (important!) section I'd forgotten to study. I ran upstairs, flipped open my book and thought, "If I don't know it now, I'm not going to know it for the test."

I closed my book, and held it in my lap, and started praying. First, I asked God for forgiveness, because I have NOT been a good steward of my time for the past couple of weeks. Too much waiting until the last minute for various things, including studing for school and completing big assignments. With finals here, and us leaving for Boston, the stress I have caused myself is immense. God gave me this opportunity to go to school, he made sure I have adequate time to study (because really, I do have enough time.) and he arranged for the financial part, and here I was messing it up!

So I asked God to forgive my waste of precious time that he'd given me. I thanked him for the things I've learned so far (most of which I have found immensely helpful when dealing with Angela's medical stuff.) I also asked him to please bless the two tests I needed to take today. Help me to think clearly, and sort through the information, and to retrieve words out of my brain that have a tendency to get stuck there! All I needed to do was PASS the class with a C.

I took the first test, and...while I didn't do phenomenally on it, I didn't do that bad either. Very "average". I took the second test (which was actually a retake) and asked my professor to not grade it, as I knew I didn't do very well on it. I'd passed it the first time, I just hoped to improve my score.

Now, let me explain about the final. Final exams are next week. You know, while we're in Boston. I had to rearrange my schedule with a couple teachers in order to take my final early. In this class it meant I'd have to take it tomorrow. Not really much time to study huh? And lets not forget the fact I am SICK!

So my professor goes over my grades and says, "You're at a solid C right now. If you take the final you can improve your grade, but you won't make your grade worse. In other words, you don't HAVE to take the final. There's nothing wrong with a solid C. That is "average"." All my other classes I have an A.

Hearing that I don't have to take the final felt like lifting 500 pounds off my shoulders! Not only that, but once I walked out that door, I was DONE with that class! HOORAY! Really, this class was killing me! If there was a class to challenge my self esteem, this was it!

Thank you Lord, for giving me the blessing of an education, and for the knowlege to PASS THE CLASS, and for removing the stress of that final!

Now all that's left is a final on Weds, an online test sometime this week (I just need to do the chapter work and I can take the test anytime before Saturday) and an online final that I'll have to take while we're in Boston.

I FEEL SO MUCH BETTER NOW!

Next semester is Math and two communications classes. I'm 12 hours a week in the classroom, most of it afternoons and evenings. Math has always been tough for me but I'm working on improving my study skills so I can pass those classes too!

Saturday, December 05, 2009

CUTE!

Ok this is very cute, but man...this guy is in for it! You know that rule about raising kids: Never start a habit you'll have to break! Still we've all felt that desperation in the middle of the night, right? LOL




Learning to ride a bike?

Is your child learning to ride a bike? Traning wheels driving you crazy? (becuase they don't really teach your child to balance, right?) Check out the Gyrowheel! This thing is amazing. So long training wheels!

More on Bulgaria

For those following my Bulgara stuff, my friend Shelley is there right now! This is her first trip, and when she gets to meet her boys. Then I'll be traveling with her on the second trip to help bring them home. It'll be a couple of months, so I still have some time to save more money. I can't WAIT!

Friday, December 04, 2009

Tonya


This is Tonya. She's turning 5 years old soon, and if there isn't a family committed to her, she'll be transferred to the institution, where she will quickly loose every skill she has and, like many kids with Down syndrome, will quickly succumb to dehydration, malnutrition, and hypothermia. Please go here to read Tonya's full story. Maybe YOU are not in a position to adopt, but if you put this on your blog, someone who IS might read it!

Need to hire help?

My tree still isn't up. Maybe I should hire these guys?

Thursday, December 03, 2009

21 years

21 years ago, I woke up in the wee hours of the morning hugely pregnant and having 2 minute contractions.

21 years ago, we realized we'd forgotten to arrange for someone to watch 15 month old Noah while we went to the hospital to deliver the new baby. (oops!)

21 years ago, my (then) husband left the house without me. He left to bring Noah to his mom's house, only he forgot to tell me. I came out of the bathroom to find the car gone. I called me mom, "Ummm he left without me."

21 years ago my husband came flying back into the driveway and escorted me to the car while I had another contraction.

21 years ago, I went from 1 cm to fully dilated in less than an hour.

21 year ago I gave two hard pushes.

21 years ago, as he was laid on my belly, I looked into the eyes of my son for the first time, and knew that he was perfect, just as God had intended him to be.

21 years ago, I held Tyler Ray for the first time.
21 years ago life changed for us, just as it does every time a baby is born and a new member comes home to the family.

21 years ago God started teaching me new things, and I'm still learning them.

21 years ago God blessed me more than I could ever know.

Tyler, I have spent the past 21 years watching you grow, and learn, and find your way in the world. I cried many tears, and I smiled many smiles, but mostly I thanked God every day for giving me the gift of having you for a son.

~Mom~




Let the weight loss begin

No, not mine. Though I sure wish it was. LOL

I'm talking about Angela. We were told that one of the side effects of the new seizure meds she's on is weight loss. That was part of the reason her neurologist wanted her to switch because of the weight GAIN she'd had on her other meds.

It has taken us a couple of weeks to get up to the full dose of the new medication, and to decrease the old. We noticed at the end of last week that she wasn't eating every single crumb of food on her plate at dinner time. By Monday breakfast had become a "take it or leave it" kind of thing.

Yesterday her teacher called to let me know she's not eating much of her lunch at school. Even her favorites she's only 1/2 interested in. They're offering her snacks, but she's turning them down! Ummmm if you know Angela, you know "snack" is one of her favorite words. LOL

So, I have completely chalked this up to her meds. It makes sense, since we started the new ones, etc. However, 2 weeks ago we also noticed she's having even more trouble swallowing, and it's taking more and more liquid to get the food to move down her esophagus. So, last night at dinner, I put her plate in front of her, and she looked at me with big eyes, "I can't eat this. It hurts."

HUH? She has NEVER complained about pain when she eats. We can SEE that she's in pain, but she's never verbalized it. When there IS a food she doesn't like (extremely rare!) if you can get her to eat a few bites she usually forgets about it and finishes the whole meal.

I said, "This is soft food. You should be ok. Take 10 bites, and then you can be done." thinking she'd forget about it. No, she struggled through 5 bites, (and it was a struggle for her to swallow it) and I told her she could be done.

Looks like I need to go buy some Boost. She doesn't like pediasure anymore after our palate expander experience last spring. I'm also going to buy a juicer this weekend. Who knows where this non-eating is coming from. Maybe it's a combination of the two. Maybe before her new meds, she was always voraciously hungry so that won out over the pain of eating? Now that she's not so hungry, it's harder to force herself to eat?

She sure keeps me guessing about things all the time!

Wednesday, December 02, 2009

Prayers answered!

Today I was able to do some work for a good friend of mine which earned me a little cash. Then this afternoon I talked to my dad an he is loaning me a little bit for the rest of Tyler's ticket. THANKS DAD!

Tyler has only flown once before, and he was scared to death not really paying attention. Mostly because he didn't need to as it was part of Angela's Make A Wish trip. Anyway, on the way out to Boston he'll be with Angela and I, but on the way back, (to save almost $200!) He'll be flying ahead of us on a different flight. That should prove to be interesting. LOL


Tuesday, December 01, 2009

Prayer request!

*disclaimer* This is not a plea for money. I'm just asking for prayer for this.

As most of you know, Dean isn't able to come with Angela and I to Boston. He just cannot take the time off work, and we cannot afford an airline ticket for him with Christmas just a couple days away.

Well, Tyler has been with us for the last couple of weeks, and it looks as if he'll be moving back home. Let me rephrase that: He no longer has an apartment to go to, and he has slept here for 2 weeks. I think he's HAS moved back home. LOL We are THRILLED by this, on several different levels, but the best is that it's just plain been very pleasant to have him around. He's been super helpful to both Dean and I with various projects, and Angela has loved having one of her big brothers here.

So today I had a thought...

I really don't want to be alone in Boston. Tyler does not have a job, and no commitments right now to speak of. (he's been doing some online classes so he can get his GED take care of. ) Why not bring him along to Boston? I think the idea is an answer to prayer, really. My dilemma is money. I do have money set aside for Bulgaria, and I do NOT want to touch it. Touching that money just seems like a slippery slope, and that money was raised for a specific purpose. It's out of bounds.

So I'm trying to come up with a way to very quickly raise the money for Tyler to go. I suppose about $300? I'd need to get his ticket ordered in the next couple of days in order to get him on the same flight with Angela and me.


Thanks Kathie!

A few of you participated in the fundraiser my friend Kathie did for me last week. I just wanted to say a heart-felt THANK YOU! Between orders, and a direct donation, There was $203 dollars raised!

Thanks Kathie! And thanks to everyone who participated!