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!"

Monday, June 29, 2009

What would you do?

I'm feeling a little bit angry this morning. We were told almost 4 years ago that Angela had Achalasia, and that her GI doctor had never seen an esophagus like hers, and pretty much left it at that. I asked if we should go to Mayo, and he just kind of shrugged his shoulders.

Angela should NOT have gone this long without treatment. Plain and simple, her GI doctor should have sent us on to someone who HAD seen it before and knew what to do about it. At a bare minimum, she should have been having endoscopies and esophageal biopsies done every 6 months, because her risk of esophageal cancer is very high.

Then there is the fact she has been SUFFERING with this for all these years. HELLO!!!!! We have had YEARS of wretching, and her having food stuck in there. And, from reading the blogs of other people who have Achalasia, she probably has food that sits there for hours at a time (or even a couple of days!) which causes the esophagus to become weak and stare eroding. Angel hasn't had a scope in nearly 4 years, so we have no idea what it looks like inside there. Her tissues *could* be fine. Or, very worse case scenario, they are NOT and we're looking at much bigger problems. The point is, it should have been monitored and we shouldn't have been just left to wander around life thinking everything was ok.

What would you do? How would you handle that? I don't think it should be ignored, but I don't know what to do either.

What does your esophagus look like?

First, here is a picture of a normal esophagus. This is looking down toward the LES (the sphincter muscle at the base of the stomach that controls the emptying of the esophagus into the stomach) It is like looking down a tube slide, basically.



And then there is Angela's esophagus! These were taken almost 4 years ago, and the GI doctor at Mayo assumes things have gotten much worse since then. This first picture is from the very top. That is NOT the base of her esophagus (that closed part) but only about 2 inches down.



You have to look at this one sideways, but this is what happens to her esophagus when she lays flat. It completely collapses. It was this picture that landed her sleeping in a hospital bed for the rest of her life. The GI so NO peristalsis AT ALL while he was in there. Peristalsis is the contractions the esophagus makes to move food down to the stomach. Think of the way a snake's body moves, and that is somewhat similar to the way peristalsis movements work.


Here is what happened when he tried to blow her esophagus open with a puff of air. He was able to get it to open to this tiny key-hole shape. Notice you can't even SEE the base of her esophagus, because this is way up at the top, and it's collapsed all the way to the base.





Saturday, June 27, 2009

Thank you for your support

Thanks everyone. I was pretty much a wreck yesterday, and not really processing anything very well. Still, now that we know what's happening "in there", watching her eat makes my stomach turn. Since she's been this way for quite some time (her last endoscopy 3 years ago showed her esophagus collapsed while laying down, we just didn't know what was happening when she ate!) Dean and I have decided to just keep plugging along until we meet with the doctor next week. (I think it's on Thursday, I forget.)

So, yesterday she woke up stuffy and sneezing green snot. Then by afternoon. She couldn't hear me at all so I knew her ears were full of fluid. I figured Monday I'd get her into the doctor. Then by evening her ear was draining, so she's ruptured her ear drum. Never once did she complain of pain.

This morning she is a CRABBY BEAR with a sinus infection! UGH! So I let her make what she wanted for breakfast. Peanut butter toast. Are you thinking what I'm thinking? How miserable would that be to eat when everything gets stuck???? AND, she's being a PILL, and refused anything to drink with her toast. No amount of begging would get her to change her mind. Finally after several bites, and her patting her chest, she asked for water.

So I'm watching her eat her toast, I remembered back to just a couple years ago when she wouldn't take BITES of things like toast, or sandwiches, or chicken nuggets. Instead preferring to rip off TINY pieces with her fingers, then put those in her mouth. How we spent a YEAR teaching her to take bites, because that's how big kids eat. It puts me in tears to think she was probably doing this because she could swallow those tiny pieces, and SHE knew big pieces go stuck, but had no way to tell us.

Two years. Every two years something blows up around here.

Four years ago, after an innocent fall on our bike, she ended up in the hospital for the entire winter. She had ripped the gortex mesh inside her belly that was holding her abdominal wall together. When she finally came home four months later she still had an open wound, and we kept her bound together with bandages wrapped around her because no tape could touch her skin or her skin would fall off.

Two years ago she woke up one day walking significantly different that she had the day before. Her balance was OFF. We were told she was a walking timebomb for a massive stroke. Then we were told no she's not. Then we were told, "Ok, well we don't really know."

This spring I told my good friend, "Hmmm it's been almost 2 years, I wonder what's around the corner?"

Then she was diagnosed with a siezure disorder. And now this. Ok, well this new thing isn't NEW. I need to keep reminding myself of that. We just KNOW about it now. We've always known she stacks food in her esophagus, we just had no idea how bad it REALLY is. And seeing it on the video screen made me want to grab her from that xray camera and run...run far....and hide with her. I wanted to back up the clock 24 hours so I could continue to not know.

And yet, it could be worse. It could be cancer. It could be something we can't do anything about. Somehow there could be something worse, so I just need to pull up my big girl panties and deal with it. I can do that, until next week when the doctor slaps me back to reality and we have to make decisions. And we have to explain those decisions to Angela. I have to remember, "It could be worse." Next week when we're at the doctor, 100 people should text that to me! LOL

Thursday, June 25, 2009

You never want to hear....

You never want to hear a doctor at Mayo say, "I have only 6 other pediatric patients with this disease, and I've NEVER seen it in a child who has Down syndrome."

Let me go back the the beginning. A couple months ago we tried to put a Palate expander in Angela's mouth. Unfortunately her oral motor skills are such a mess that it was a DISASTER! It ended up that she was on a 100% liquid diet for that week, and was miserable. Finally we took it out and decided to really push oral motor therapy over the next year, then try in again. In the meantime we did start her with her braces.

Her speech therapist wanted to try Vital Nerve Stimulation, which is putting tiny electrodes on the muscles of the face to stimulate them, and kind or re-teach them to respond. I decided to give it a try, but in the meantime also decided I wanted her esophagus checked out at Mayo. Her regular GI doctor had suggested doing this 3 years ago, because he was stumped. But Angela was "ok", so I decided not to persue it any further. Now that the ST wanted to try something new I figured it would be a good time "just get her checked out."

I should have known better!

June 25th, meeting with Mayo Ped. GI specialist:

Achalasia in adults is about 1/100,000, but is extremely rare in the pediatric population. Angela has "Cricopharyngeal Achalasia", which is the most rare form of Achalasia. It has only been seen in a handful of children. The pediatric GI specialist we saw today said she only has a few pediatric patients with  regular Achalasia, that is Achalasia of the LES, and all but one of the patients she's seen with it have had a nissen fundoplycation done. NONE of them had Cricoparyngeal Achalasia. It is a "luck of the draw" kind of thing. A very rare potential outcome of a nissen. Nobody knows for sure, as there is no way to tell, but her theory is that at the time the nissen is done, the vegus nerve (the one that controls the major organs, including ganglion cells in the esophagus, and also the colon) is caught up in the wrap and subsequently damaged. This could also be why Angela is not only constipated, but doesn't know when her bladder is full either.

Over the next couple of weeks we'll be doing lots of different tests to see just where Angela's esophagus is at. Achalasia is a disease process...that means it gets worse, not better.

There are a couple of options:

1) Undo the nissen, and do a partial wrap, and cut the LES. (the sphincter muscle at the base of the esophagus. The only thing we don't know is if, when we undo the nissen, will she start refluxing like crazy again. Her nissen is 12 years old. While we did see what our regular GI thought was reflux on her last scans, this GI believes it was actually residual barium that couldn't get through the nissen. This does make more sense.

2) go in endoscopically 1-3 times per year and give the UES a shot of botox to relax it, allowing her esophagus to open easier.

That's all I know for today.

Update Friday 6/26:

Today was not a good day, as I really didn't expect to see what I saw. Angela's esophagus is in far worse condition than I imagined.

So today Angela had an upper GI with small bowel follow through. This is a barium swallow test. So, Angela starts out drinking the barium. The barium moves down her esophagus. In a normal barium swallow, you'll see boluses of liquid shoot through the esophagus. In Achalasia, you see the esphagus fill up with barium instead. In Angela's study, initially the barium went through ok. You could see where the nissen was, but it was basically ok.

Then we added ONE BITE of a barium laced cookie. Angela doesn't usually chew very well, but this time she was watching herself on xray so she chewed really well. LOL She swallowed it, it entered her esophagus, then about an inch down (about the level of your adams apple) it SAT THERE. It didn't BUDGE. This was CHEWED food, what happens when she DOESN'T chew well? She had another bite of cookie to see if it would all move down with more weight. NOPE! Now she has TWO bites of cookie there.

Ok, so we had her drink more of the barium to wash the cookie down, only it NEVER MOVED! Instead the liquid just went around it. THEN, the barium stopped moving through her esophagus, and it just started filling up, and up, and up, until we stopped because the risk of aspiration was too high. Finally the liquid moved through, but the cookie was still up at the top of her esophagus. SITTING RIGHT IN FRONT OF HER AIRWAY!

The doctor ordered the test stopped at that point. So we went to the waiting room for 20 minutes, then back to make sure the cookie had cleared. UM NO! It was still in the exact same spot! We waited another 10 minutes and it was STILL there! OMG! All this time Angela's only reaction was a tiny bit of throat clearing, and she patted her chest once like she does when she tells me she has something stuck. The radiologist was shocked she wasn't in pain. I said, "Ummm...she's been like this for YEARS, this is NORMAL for her!" Angela doesn't show pain. If she was any other person, this would have been dealt with years ago because it would be unbearable. For her, she doesn't know any different. How sad is that? Solid food is NOT moving through. I'm guessing once her esophagus is full of food, eventually the bite she eats now is pushing the one she ate 5 minutes ago into her stomach. This is a recipe for disaster, and the radiologist couldn't believe she hasn't had aspiration pneumonia time and time again.

The ramifications of this are HUGE! Next week we're meeting with two different neurologists (neurosurgeons? I forget.) and have more tests done, then finally meet with the GI doctor to go over everything again. I'm SCARED TO DEATH of what the GI doctor is going to tell me. I pretty much know, since the other surgery isn't an option for her. Either she's no longer going to be able to eat solid food (so liquid or soft food diet), or she's going to have to go back to a gtube.

The thought of the gtube doesn't bother me. (might bother Dean. LOL he's never seen one before. ) Angela had one for 3 years, and it wasn't a big deal. What IS a problem is the way her skin breaks down from it. And, lets not forget the fact that Angela ENJOYS eating. If you've ever been with her when she eats, you know she savors every bite. I can't imagine telling her she can't eat solid food anymore.

This is horrible. Yes, it could aways be worse. She could have developed Barret's esophagus, or a miriad of other things. She is ALIVE, active, and one of those "you'd never know by looking at her" what kind of secrets her body holds. So yes, it could be worse.

But right now, to me, it seems pretty bad. Angela has no idea what the next couple of weeks hold. A few more barium studies, and some meetings with doctors. She has no idea that when she sits next to me in an exam room watching a movie on the computer while I have a boring conversation with yet another doctor, that we're discussing her future, and the fact one of her favorite activities.....eating....is no longer an option.

So next we went down to the hospital cafeteria for lunch. As I watched her eat her turkey sandwich, I cringed as she swallowed. The thought of that ONE BITE of chewed up cookie stuck in there.....so now she's eating an entire sandwich.....can you IMAGINE what bread does in there? UGH! No wonder she doesn't like to eat bread all that much. So I thought about the other things she doesn't like to eat (there aren't very many) and all of them are things that would have A LOT of trouble moving through. Cereal, bread, lettuce (she loves veggies, but I bet lettuce sticks to the side of her esophagus like paper would!) and things like that.

Never again will I demand she eats her crust.


Wednesday, June 24, 2009

I'm Leaving!

Yep, getting in the car and headed south. Ok, we're not going very far. Just to Rochester. LOL Angela and I are headed down to Mayo to meet with the GI specialists there about her esophageal issues. We're there tonight for appointments at 7:00 a.m tomorrow, then come home, to turn around and head back on Friday morning! Lots of driving. Lots of gas money. Fun times!


Sunday, June 21, 2009

Ohh my favorite movie is on!

I watch this movie about once a year, and I was flipping through whats "on demand" on Comcast, and it's on! 

"The Other Sister". If you have a child with a disability, and you've never seen it, do watch it. BOTH mom and dad will like it. If you're the relative of a family who has a small child with a disability, this might give you a small glimpse into our lives, and some of our fears of the future. Fair warning though, have some tissues nearby.

Thanks Dad!

Thanks Dad

Thank you for giving me a lap to sit on and cuddle with my daddy. I can remember being about 2, sitting with you in a blue chair, and reaching up and touching the stubble on your cheek.

Thank you for letting me walk to the mailbox with you when we lived in the pink house. I remember stomping in puddles along the way, and you asked me if I could make a bigger splash.

Thank you for TRYING to teach me to ride my bike on that awful gravel driveway. I can still see YOU riding my bike down the hill!

Thank you for letting me play with your hair! What was that stuff anyway? Your hair would stay in whatever position I put it in!

Thank you for buying me my first baseball glove, and coming to my teeball games.

Thank you for taking us on those family vacations in the motor home! I know we weren't the easiest bunch to travel with.

Thank you for paying for my new front teeth every time I knocked them out.

Thank you for not killing me when I ran the brand new riding lawn mower into a tree...the same day you brought it home. I'm sorry it never ran right after that!

Thank you for teaching me to tie my fishing line in that special way so my lure wouldn't fall off!

Thank you for letting me fish with you, and nap in the bow of the boat when I got bored.

Thank you for accepting the fact I prefer to bass fish instead.

Thank you for suffering through my tagging along every weekend when you met "the boys" for breakfast. I'm sure they gave you a hard time about it, and  placed bets on weather or not you'd make it out the door without me!

Thank you for teaching me how to walk through the woods very quietly, it helped a lot when I snuck into your truck so I could go to breakfast with you.

Thank you for letting me caddy for you when I tagged along on your golf outings. I'm sorry I never learned to love the sport. What is a birdie, anyway?

Thank you for taking me duck hunting, and letting me sit in the blind with you and whoever else was along.

Thank you for teaching me how to paddle the duck boat extra quiet so I wouldn't startle the ducks! It helped a lot when I would go out with Mike Ziegler, because I wasn't allowed to make a SOUND when I paddled the boat for him!

Thank you for putting up with the tennis ball marks on the garage door when I would spend hours playing catch against it. I was going to be a major league pitcher you know, even if I did throw like a girl.

Thank you for putting up the basketball hoop, and teaching me to do lay ups, even if I did have the coordination of an ostrich.

Thank you for building me a pair of stilts! Those were SO COOL!

Thank you for being there for me when my pet bird died. You handled it very well. You found something for me to burry him in and everything. I bet you didn't know (you were busy watching a ball game in the den) but I buried him right under my bedroom window!!! (which was right in front of the basement bathroom window!)

Thank you for trying to convince me my elbow wasn't broken.

Thank you for teaching me how to ride the 500! I can still see Mom, sitting in a lawn chair on the driveway to watch, sure I was going to kill myself on it. But you told me I could do it, and I soooooo wanted to show you that I could, all 80 pounds of me.

Thank you for not saying, "I told you so" when I wiped out in the field on that same 500! And you didn't even say anything when I couldn't walk on my ankle for DAYS afterward!

Thank you for taking me along on those motorcycle trips. You gave me my sense of adventure!

Thank you for not killing me when I took the truck without permission...before I had my license...and I couldn't see well enough to pass an eye exam.

Thank you for not saying much when I came home drunk that one day when mom was out of town, and thank you for doing the morning barn chores for me because it was pretty obvious I wasn't in any shape to do them! And thank you for not waking me up when I was sleeping it off.

Thank you for being there when I got married....every time.

Thank you for not saying "I told you so" when it didn't work out.

Thank you for helping me all those times I asked if I could "borrow a few bucks", and being patient when it took longer than I expected to pay you back!

Thank you for being there when Angela was born.  I can still see you standing at the foot of my hospital bed, with tears running down your cheeks as I was told the news.

Thank you for all the Ivanhoe memories. They are they BEST!

Thank you for accepting Dean. I love him so much. I don't know if you've noticed, but he's a lot like you.

Thank you Dad, for all the memories, and for being the best Dad I could ever ask for!

Saturday, June 20, 2009

Taking the gold


Yesterday was the state Special Olympics track meet. Angela and the rest of the RAVE team did a FANTASTIC job, bringing home  LOTS of medals!


Waiting for her next race



She's more concerned about smiling for the camera than she is her race! LOL


But she still took the gold!!! The finish line is right in front of the grand stand, and Angela turned to the stands full of fans and did this pose, because surely they were all cheering for HER! LOL This picture is so classic of Angela's personality!


Lining up for the relay. From 50 yards away she can hear me, but isn't exactly sure where I am. Her main concern is making sure I'm watching. LOL


And they took the bronze! They did a FANTASTIC job! They took 2nd place in their division, which happens to be mostly adults! 


 



freeze!

More than 200 dancers were performing their version of "Do Re Mi", in the Central Station of Antwerp. with just 2 rehearsals they created this amazing stunt! Those 4 fantastic minutes started the 23 of march 2009, 08:00 AM. It is a promotion stunt for a Belgian television program, where they are looking for someone to play the leading role, in the musical of "The Sound of Music".Make sure to watch the WHOLE THING!


Tuesday, June 16, 2009

80's music

My friend Jane posted this on my favorite forum. This is 80's music, the LITERAL version! You know how those old music videos never actually related to the song? Well, this straightens it all out for us!


Monday, June 15, 2009

What's brewing?

Angela had a great day today, but I noticed something very strange...she did NOT ask to eat every 15 minutes today! In fact, she ate breakfast, then 1/2 her lunch, and that's it! Mind you she swimming and track, and we played ball outside together. When we got home from track I asked her if she was hungry for dinner, "No, I'm just lay on the couch." She proceeded to grab a pillow and a blanket, and was out in a couple of minutes. 

Yeah, she could be going through a growth spurt, though it would have to be out and not up, because she's not really going to get any taller. It could be from the adjustment I'm making to her meds, (we're weaning her off the Risperdal) but that should make her LESS tired, not more. Or she could be getting sick. Other than the staph infection she had in her belly button and ear a couple weeks ago (did I post about that?) she hasn't been sick for quite some time. She has no cold symptoms. Nothing. Just no appetite and sleeping. 

If this was one of my other kids, I wouldn't give it a second thought. But because it's Angela, I worry over the little things because with her, they seem to turn into much bigger things really fast!

Mini Lap Top GIVE AWAY!

In appreciation for those who donate funds for their adoption, my friend Shelley is giving away a Dell Mini Laptop! You can find out more details by going HERE.

Please help bring these boys home!

Ummm...Bulgaria?

Those of you who've been following my blog for awhile know that I have a heart for adoption. This was created in part because my life has been full of adoption. I, myself, am a triad member. That means I'm part of the adoption triad of parent/child/sibling. I am a sibling who has been reunited with TWO siblings...My sister Ila, and my brother Jeff.

Angela's dad is an adoptee, and at his request, in 1992 I started searching for his birth mother. Not only did I find her on Thanksgiving day 1993, but I also found his biological father's family as well. This reunited him with his birth mom, three sisters and three brothers! (his biological father had passed away a couple years before.)

Shortly after finding his birth family, I started searching for his adopted sister's birth family. She didn't want to meet them, but was in search of medical information. I never was able to locate her birth family, but during the 3 years I searched, I was able to reunite OVER 200 adoptees and birth mothers with their biological families!!! These were "mutual consent" reunions, where both parties wanted contact. It was the most rewarding thing I've ever done in my life so far!

Then there is the sibling group of four that my sister's family adopted when Angela was little. That made a family of 9 kids for them.

And now I'm taking it one step further. Over the past couple of years, as I've watched adoptive families bring home their children with DS from countries such as Ukraine, and Russia, I've had this desire to GO THERE and SEE for myself. I don't know why, I just have to go. We've started the process to host a Ukrainian orphan, and hopefully next year I'll be able to travel there with a humanitarian group that delivers aid to the orphanages of Eastern Europe.

But there is MORE! My friend Shelley adopted two boys over the last couple of years. Xander has Down syndrome and came from Ukraine, and Grifyn was the first child with DS to be adopted out of Serbia! Their family has decided it's not yet complete and is now adopting two boys with DS from Bulgaria. They will be the first children with DS allowed to be adopted out of Bulgaria!!!!

Most countries require two trips for the parents to the country of adoption. But Bulgaria only requires one parent. While Shelly's husband stays home to care for their 5 other children, Shelley will be making one trip to meet and get to know her boys, then another to bring them home. But for one parent to bring home two children alone, (who've never left the orphanage before, never ridden in cars, never eaten in restaurants, much less flown in a plane!) is a daunting task. Can you imagine one parent making that trip? I can't! And so...I'm GOING ALONG!

Right now we have no idea when we'd travel. Shelley is hoping her first trip will be sometime in September or October, but that is an educated guess, and we don't know the timeline for the second trip. My job, between now and then, is to start raising the money I need to travel. I've added a "chip in" button to my sidebar, and hope to be doing a couple give-aways very soon to help raise the funds I need.

I have to admit I have an ulterior motive. I plan to bring along lots of pictures and videos of Angela LIVING LIFE, so people there can see that people with DS CAN be something. They have VALUE. They should not be spending their days tied to their cribs, just waiting for the next infection, malnutrition or dehydration to kill them. That's what's happening all across Easter Europe, and as I type this babies just like Angela are dying. Maybe that's why I feel so strongly about going?


Friday, June 12, 2009

Homing Holly

Our family grew this week, on a temporary basis. you can read more about Holly's journey to a new family here. Make sure you scroll to the bottom of the page to read from the beginning.

Do you have clean water?


If you'd like to know more about this project, please contact my friend Abby. She is an obedience trainer/co-worker of mine at the training school I work with. This spring she and her husband traveled to Ethiopia to adopt their son.

*a note from Abby* "Thanks for posting the video! If you'd like to donate you can go here: www.kevindhendricks.com/bald (100% of the money goes directly to a well in Ethiopia) or you can donate here: www.charitywater.org (100% of the money goes to the wells - just not specifically for Ethiopia). Thanks again."

Thursday, June 11, 2009

This is why: Bulgaria

This is why families to go Bulgaria to adopt. Children in the U.S., even if they're orphans, will never know this level of suffering. The fact that this suffering is 100% preventable sickens me. In the U.S. this child would be running, talking, and going to school.

Monday, June 08, 2009

This is the way the world works

Dogs are funny creatures! Like most animals, dogs are very much creatures of habit, and if you do something a certain way for 3 days, usually by the 3rd day the dog has that habit figured out. I'm not talking potty training, I'm talking OTHER things. Here are some examples:

During the week, the dogs have "last outs" at night somewhere around 10:00. When the come back in they all crash, except for Roman who stares at me with the "I wanna go to bed now." look. Then  when Dean gets up at 4:30 in the morning he lets the dogs out, then puts a pot of coffee on, then lets the dogs in. Roman goes back to his kennel, and Dudley, Zurri and Rubee crash on the bedroom floor. Then, when I get up at 6:45 everyone goes out again, only they stay out until Angela leaves for school.

But weekends are different, and Dean has been sleeping in lately. Unfortunately the dogs don't understand "weekends". It doesn't matter that they had last outs at midnight. 4:30 is 4:30 people, and that's when the should go out! Usually it's Dudley sticking his "Barney" stuffie in my face. "Mom...Barney and I want to go out, and so does everyone else!" all the while is tail is thumping Roman's kennel, waking Roman up. LOL  (and yes, this is Angela's old Barney that Dudley is carrying around.) I respond with "Dudley, go lay down. It's not time yet."

So Dudley lays back down, as do Zurri and Rubee. Roman will let out a long "Oh fine!" sigh from his kennel and everyone goes back to sleep. When Dean does finally get up, he does his usual morning routine. Here's where it gets annoying...

When I get up 15 minutes later, all the dogs are dancing around to go outside, because...you know...that's the routine! I get up, I let them out! Never mind they were JUST OUT! That doesn't matter. Instead they're acting like it's been HOURS, and they're going to burst if I don't let them out. So...out they go.

Then there is the "You're home!" routine. You see, as you may have guessed from reading above dogs don't have a concept of time. So, if I leave and I'm gone for 5 hours, I get a great greeting when I come in the door! Dudley runs to grab is stuffie, Rubee grabs a shoe, Zurri tries to get to the front of the pack to sniff me all over and see where I've been. (and maybe I'm coming from dogs school, in which case I smell like 50 other dogs AND have a pocket full of treats! LOL) And Roman spins at my feet hoping I'll pick him up to say hello. 

Now, lets say I just walk down to the mailbox and am gone for just 5 minutes? Yeah, I get the EXACT same greeting! LOL One thing I know for sure, my dogs sure miss me when I'm gone!

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Saturday, June 06, 2009

The Celebration

Yesterday we celebrated Angela's birthday with her friends. She decided she wanted to see a play, so we took two of her friends (and one mom) to see "Ramona" and the Children's Theater Company of Minneapolis. Angela and I were particularly excited to see this, as our friend Katie was playing the role of "Susan".

When Adam arrived, he had a surprise for Angela.  He wasn't sure what to do with it, so he handed her and gave her "knuckles". LOL


His mom Monica instructed  him how to put it on properly. Adam took his job very seriously!


He checked to make sure it was on the right way.

Angela wasn't quite sure what to think. She was quite taken by the whole experience. 

Then they posed for a picture together. Angela told Adam she wants him to be her husband.

Then we went to pick up Angela's friend Tanya. Angela didn't know there was a surprise waiting for her there. Tanya's mom Jane made an AMAZING peanut butter PIRATE cake! 



We opened presents first. Angela loved all of them! Adam gave her this Darth Vader shirt. Angela has been asking for one over a year now, since she saw Adam wearing one. LOL

Adam also gave her this High School Musical card. The kind that plays music. You know the whole thing about "give a kid a box and they'll play with it for hours." thing. Well, I've heard this card about 5 bazillion times today! LOL

Adam's mom gave Angela these STRIPED ear rings! Perfect, since Angela is obsessed with stripes.

And a couple of striped shirts as well. Angela's going to be looking fine in all her stripes this summer!

Tanya gave her this picture taken last week when we all went to the Minnesota Twins game together. It's a great picture!

And what would a birthday be without singing "Happy Birthday!"?


After cake, it was time for us to go to the play! Here's one last picture before we left. Doesn't everyone look nice, all dressed up for a night at the theater?


13 years ago

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."
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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.
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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.
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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.
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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.
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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.
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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!
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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!
Angelasummerflower
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PhotobucketYour 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.
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Dr. Angela 2
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PhotobucketYour 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.
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PhotobucketYour 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.
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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.