The Almost Impossible "Ballerina & Astronaut" Party - The Planning & Decorations

Only Danielle would decide to have a Ballerina & Astronaut party! I think she wanted a ballerina party, but knowing that the boys she plays with wouldn't like it, she tacked on astronauts.

I love my daughter but I refuse to spend a fortune on a birthday party. Around here parties  start at $200 for 8-10 kids -- and that doesn't include food or cake.

I don't know about you, but I only remember a few of my own birthday parties. I want this party to be fun and special, but it doesn't need to be extravagant. So, how can I create fun and special for for less than $200?

Danielle is in kindergarten this year and the expectation is that we invite the entire class to her party. If they were all to show up with their parents I could have 60 guests! How can I possibly keep the cost reasonable? Besides the obvious hope that most of them will already have plans for the afternoon of the party...

I love Smilebox, Evite or Punchbowl for free evites. I really like being able to track the number of guests. I remember my mother frantically trying to redistribute the contents of goodie bags when a neighbor showed up with all 4 of her kids instead of just the one who had been invited.

I'm not much of a crafter - or much of a cook- but the obvious answer to staying on a budget is DIY. Or to cut the guest list - dramatically.

Thank goodness next year they will be old enough for a drop off party! I  think I'd rather corral 8 unruly kids by myself than have host so many people...

Want a good laugh? Go to Catch My Party. These people are hosting over the top birthday parties for 100 guests. I really wish I knew the budget on these extravaganzas! One woman wrote, "For months I have been making and collecting all of the special details that made this party what it was..." And I thought I was insane. What happened to cupcakes in the backyard?

Decorations

First I had to think pink. That's the basis of ballerina-party decor.  Pink tablecloths, streamers, plates, napkins, balloons... Wrap everything that doesn't move in tulle. Add a little sparkle and you're done.

But, how do I combine all of that PINK with a space theme? I needed to come up with decorations that worked for both themes. Inspired by a recital costume that I paid for but Danielle never wore(that's a post in itself!) I think I'll add some dark purple, lavender and silver accents - like the night sky. The stars will help create a glittery effect.

It's always good to look for inspiration in your own home. As I walked around our house I found things I could use for decorations - a Moravian star light, a crescent moon light from Ikea, a toy space shuttle, a ballerina statue, old ballet slippers, the unused recital costume...

My first DIY project was to paint pictures of ballerinas to decorate the mantle. I'll use a feather boa from Dollar Tree as a garland. I'll finish everything off with silver stars and pink crepe paper streamers.

Next I made a tutu wreath for my cake plate. I bought a 25 yard spool of pink tulle for $2.50 at Hobby Lobby. I didn't want to pay $9 for a wreath form so I figured out how to make a tutu for my cake stand out of a $3 embroidery hoop.

Tip: Always get online coupons for Hobby Lobby & Michael's before you head out. They typically save you 40% off of one full price item. Also check WalMart & Dollar Tree for craft items. They often have the same things for a fraction of the cost.

Since we always end up outside I have to think of ways to decorate the patio area. I'll hang some flower balloons. Thanks All Things Simple for the instructions! I also get some mylar star balloons from Dollar Tree.

Photo from All Things Simple

And, of course, I'll make signs! It's my favorite part of party prep. It takes a while to letter the signs but they add a big splash of color to the party decorations for a dollar a piece. Best of all, this year the kids can actually read them. I copied a font called NASA-lize for these. I printed out the NASA logo and the rocket ship.

 

I folded this sign like a giant table tent

Next we made rockets for decorations! We used recycled materials - mailing tubes, cardboard boxes and paper plates. It took about 10-15 minutes.

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The Table

Instead of individual place settings I'll set out a buffet. I'll wrap empty shoe boxes in paper to elevate some of the dishes on the table.  I found pink tulle for 97 cents a yard at WalMart that I can use for bunting.  

I hung tutus (that will double as party favors) from the windows. I distributed space helmets around the room (these will also be party favors later.) I made a moon cake topper based on the instructions in Urban Comfort. I modified the rosette to look more like a tutu for my party.

I also made tutu cupcake toppers and rocket cupcake toppers. The rockets were easy. The first few tutus were a bit of a pain. If you decide to make them you'll need to sew crepe paper. (Who came up with that brilliant idea?)

I made three of the adorable crepe paper tutus before I had an epiphany. I saw Meri Meri Ballerina cupcake toppers in Marshalls. I realized that they were just the cutout leotards with a tied piece of tulle glued on. I went home and tried to replicate them. In less than 10 minutes I had 11 sweet little tutu toppers!

My renditions are never picture perfect, but my audience isn't particularly critical, either. Luckily for me most kids care about how cupcakes taste - not how they look.

 

The best part is that Danielle helped me put these together.

When you're working on a budget you need to have plenty of time to do things yourself. Buying three dozen little paper cupcake toppers through Etsy would have cost about $35 - crazy for things that will end up in the trash. Making them ourselves cost less than $1, but took almost an hour and a half to cut out and glue together. All we needed were 2 sheets of 8x11 scrapbook paper and a few feet of crepe paper from one of the rolls of streamers, some glue,tulle and toothpicks.

I hate goodie bags, but Danielle considers them de rigueur and it is her party.

I found a great blog,Smitten blog Design, that provided a link to free Space Downloadables for the boys' cups and Princess Downloadables (including tutus and ballet shoes) for the girls'. By finding them on the same site the sizes and color palates are similar. (If I'd been thinking clearly I would have saved a lot of time and used these for cupcake toppers as well.)

I'll keep the contents minimal. A few wrapped pieces of candy and some trinkets. The girls' favor bags will include only plastic bracelets - on sale at Michaels' for 50 cents. The boys get foam rocket launchers (75 cents each through Amazon).

It took a little creativity and a lot of planning, but including everything from coffee stirrers to space helmets I spent $199. I just barely stayed within budget!

Every year Danielle makes a new front for her bean bag toss. I got half this year! My side is astronauts. Her side is dancers.

Coming Up Next The Menu & Activities...

More pictures will be posted after the party!

How to Make a Rocket from a Cardboard Tube

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Super Easy Rocket from Recycled Materials

Today we made rockets out of mailing tubes. I had two mailing tubes in the recycling.You can make rockets, shuttles,etc. following the same basic plan using smaller tubes like paper towel tubes or empty toilet paper rolls. It took about 10-15 minutes.

We cut tail fins from old boxes. Use the first one as a template for the others so they are all identical (especially important if you want your rocket to stand.) Triangles are the easiest shape to cut out.

Cut slits in the tube with a box cutter to the length of the end of your tail fin.

I followed Martha Stewart's instructions exactly to make the nose cone - measuring the cylinder and making a compass out of a pencil and string... Turns out you get a half circle almost exactly the same size as half a 9" paper plate. Save yourself the time and use a paper plate trimmed and cut in half for the nose cone!

 

When the glue was dry I spray painted the whole thing white. I decorated it very simply using duct tape for stripes when the paint was dry. Danielle was a little more creative with hers.

 



These will make a great addition to our Ballerina & Astronaut Party Decor!

Cake Stand Tutu

I saw my dream ballerina cake on Pinterest. I knew I couldn't do all of the beautiful fondant work, but I figured that I could pull off a fairly respectable Cake Stand Tutu.  But, how?

Isn't this just pink perfection?

I searched for tutorials on DIY cake stand tutus. Hmm... lots of people seemed to like them, but no one was sharing how to make them.

So, I made it up myself. Here's what I did.

First I knew I didn't want a large Styrofoam wreath as the basis for my tutu so I had to think of some other way to make a tutu.  Love & Sugar Kisses blog had a  great post on how to make a long, flowing cake stand tutu that I considered following.

I didn't use her instructions mainly because I don't own a hot glue gun - and her warning about burning your fingers made me a tad nervous. Besides, I wanted a puffy tutu like the one in the picture.

I bought a  10 " embroidery hoop for $3. I bought a 25 yard  roll of 6 inch tulle on sale for $2.50 and began to experiment. At first I thought I could get away with just stuffing tulle between the two piece of the hoop.

 

It didn't quite look right, but it was easy.

 

I separated the two pieces of the hoop. I happened to use the outside piece with the clamp because my daughter was playing with the inner loop. (I think the inner loop might have looked better because its a little smaller.)

 

I cut lots and lots of 9" strips of the tulle ribbon. Thanks to Treasures for Tots blog for the quick tip for cutting lots of strips of tulle!

 

 

Next I began tying the strips around the embroidery hoop.

I folded a strip in half and laid it over the hoop

 

Then I pulled the ends through the loop I had made.

 

 

Then pulled the ends tight to create a knot.

 

Then I repeated it over and over again until

 

it looked like this.

 

I cut a bunch of 4 inch lengths and tied them together with a ribbon to cover the screw.

 (You wouldn't need to do this if you use the inner hoop.)

 

I love the way it came out. I can't wait to see a cake on it!

 

I used about half of the spool of tulle and one of the rings of the embroidery hoop. The materials cost $5.50. It took about 30-45 minutes to tie all of the knots. Who knows? I might make another one night while watching a half hour show. It wasn't hard at all.

Dinosaur Birthday Party

My next foray into themed birthday parties came when Danielle turned four. She was obsessed with dinosaurs that year so the theme was obvious.

I started off simple. In fact, I made very little for this party because it was easy to find dinosaur party merchandise.  Almost everything (hats, masks, dinosaurs, pinata fillers) came from Oriental Trading.

Another fun, inexpensive party! I think one of the keys to hosting a really good kids' birthday party is not to do too much. I try to provide a framework without directing every minute.  I let the kids' imaginations take over and allow them to make their own fun.

The best part of the party was the Dino Hunt.  We started the kids at our tent, Danielle's Dino Base Camp. I love that Danielle drew the dinosaurs for the sign! Each child picked a safari hat from inside the tent.

Then they "discovered" dinosaur footprints that Kevin had spray painted on the lawn.  The hunt was on!

We filled a plastic wading pool and the sandbox with clean play sand. Then we buried tiny dinosaurs for the kids to dig up. They loved pretending to be paleontologists! Even though it was cold the kids spent more than an hour outside playing in the tent and making up games with their little dinosaurs.

 

 

After a chilly dinosaur hunt everyone went inside for cake.  The kids all got dino masks to wear.

 

 

When cake was gone we played pin the bone on the fossil. The party ended with a dinosaur pinata filled with candy, dinosaur stampers and wind up dinosaurs.

 

How many parties have you been to where the kids banged endlessly on a pinata without it ever opening? I went to one where the dad gave up and pulled out a saw! With younger kids I prefer a pull string pinata (having once seen a kid get hit in the head with a baseball bat at a neighbor's birthday party.)

 

All you have to do is cut out three sides of a rectangle on the bottom of your pinata. Punch one small hole in this flap and tie a ribbon through it. Knot it well. Fill the pinata and close the flap. Don't tape it shut! Then tape enough ribbons to the bottom so each child will have a chance to pull one (assuming the lucky ribbon isn't pulled early.) The taped ribbons will pop off when they are pulled. The tied ribbon will pull open the flap and release the treats.

 

 

 

Dora the Explorer Birthday Party

I think my obsession with birthday parties started when Danielle was three. Up until then all of our birthday parties were simple, run of the mill parties. We had them in the backyard, bowling alley or Chuck E Cheese. No fuss, no muss - no themes. And, then Danielle discovered Dora and I went a little crazy.

Danielle had 2 guests and her cousins at her third birthday party. There is NO WAY I should have made a big deal out of this. But I did.

Like all addictions, it snuck up on me slowly. I started by ordering a Dora birthday cake from the grocery store. I bought Dora hats, tablecloths and a Dora pinata.

 

I think it was then that I had my epiphany. I themed her party after an episode of the TV show. I made goodie bags that looked like Backpack, complete with The Map sticking out of a side "pocket". I used purple gift bags. I printed the faces from a Nick Jr online BackPack craft.

I drew a big Map on a piece of poster board and the kids raced around the yard following it to the surprise at the end - Danielle's first bike. I made a few more things and created obstacles out of items we had around the house.

 

I wrote a story including the kids that I read before they went on their big adventure. In the story they followed the map through Butterfly Garden where an evil witch had shrunken all of the animals in the jungle. Before the party the girls helped me make coffee filter butterflies. I bought miniature zoo animals and magnifying glasses. The kids added these to their goodie bags.

 

 

 

Next they had to get past the Bo Bo brothers at Monkey Mountain. I know they are from Diego, but these were 3 year olds! They threw bananas at a monkey bean bag toss to distract those silly Bo Bos. They added small stuffed monkeys to their bags for getting past the Bo Bos

Danielle's teen aged cousin Kiera graciously donned a homemade Swiper mask and jumped out at the kids while they yelled "Swiper, no swiping!"  I used a purple foam mask and decorated it with foam cutouts. I glued orange foam ears to a plastic headband. I didn't think it was very realistic, but one child ran screaming from her!

The kids had to reach Rainbow Tunnel (a crawl tube) to free the remaining (stuffed) animals from a cage (made from a box with duct tape "bars"). When the animals were free everyone got a plastic medal.

 

 

It was easy and inexpensive. Best of all it was so much fun. I was hooked on theme birthday parties from that moment forward.

 

Rocket Spaceship Cupcake Toppers

There are lots of exquisite rocket cupcake toppers for sale on Etsy. They are lovely and undoubtedly required a great deal of time and talent to produce.

Mine are much simpler in design.  That makes them very simple to make. I was inspired by the rocket shaped shelves at our local library.  The shelves are such a simple design, but very effective - and easy to copy!

This cost me nothing. I had a piece of leftover scrapbook paper. I also had toothpicks & glue on hand at home.

It took about half an hour to trace, cut and glue 15 of these cute little rocket cupcake toppers.

This is actual size - just trace from the screen.

Instructions:

1. Start by tracing the Rocket onto a piece of cardboard. I used a left over cereal box for my template.
2. Cut out the cardboard template
3. Fold a piece of scrapbook paper in about 1-2 inches along the long side.
4. Trace the template on to the white side of the paper so your lines don't show up.
5. Cut the rocket out. You should be cutting through a double thickness of the paper.
6. When you are done glue the white sides together, sandwiching a toothpick or lollipop stick in the middle. Allow to dry.
7. Decorate with round windows, flames, etc. cut from other pieces of scrap paper. I used stars from the School Supply section of Dollar Tree.

Part of my rocket fleet drying

 

"A Farm in the Country..."

A while ago the parents of one of Danielle's friends decided to get rid of all of their pets. They had gotten the pets to teach their kids responsibility.

It didn't work.

The kids were bored with the pets and the parents didn't feel like taking care of them. So they posted an ad on Craigslist and gave away the guinea pig, rabbits and mice including the hutches and cages.

At the time the mother asked me not to tell her kids what she did. She told them that they went to live with wild animals in the woods. "We don't want them to think we're the kind of people who just give away their pets", she said.

"But you are," I thought. It reminded me of every TV sitcom where the parents tell the child that his dog has gone to live on a farm in the country.

Yesterday Danielle asked what happened to the animals. I told her, "Mrs. X said they went to live in the woods."

Danielle thought quietly for a moment and then asked,"So, where did all the cages go?"

Smart girl! I decided to tell her the truth. That the family didn't have time to care for the pets and gave them to good homes. It seemed far more compassionate than letting her think they neglected the animals and they all ran away.

"Why did she say they went to live in the woods?" Danielle asked.

Hmmmm... how to deal with this one?  Tell her the woman lied? Tell her that her friend isn't as bright and hadn't connected the missing cages to the missing pets? Again, I decided on honesty.

"She didn't want the kids to be sad that they gave them away. I think she thought they would be happier thinking they were wild and free."

"What about hawks? and coyotes? Won't the kids worry that they'll be eaten?" asked Danielle.

I sighed. "I'm not sure, honey," I finally said."But aren't you happier knowing they are safe?"

"Sure," said Danielle with a smile."And maybe the new family won't be liars."

Out of the mouths of babes! I don't know what lesson Danielle's friends got from this experience, but I know what Danielle has learned - the truth is always better than a lie.

 

"Oh, no! My Child Has to Have Surgery!"

I've been thinking a lot about surgery lately. So much that I actually thought I'd written about this already....

Years ago I was waiting while Amanda had leg surgery. We were sitting in the Day Surgery Lounge of Children's Healthcare. Near us was another family, the mother sobbing hysterically in her husband's arms. I wondered what their child could possibly be going through to have her is such a state. After about an hour she collected herself and sat quietly waiting.

When the nurse brought them back to see their child I overheard her husband say, "There, I told you a tonsillectomy was nothing to be scared of." It was all I could do not to laugh! All that drama for tonsils? Seriously?

Then I remembered Amanda's first surgery. The first surgery is terrifying for parents, whether it is open heart surgery or a tonsillectomy.

In February of 2006 when Amanda was 6 years old she had strabismus surgery.  I was scared and frustrated. We'd had her wear a patch for ages in order to avoid surgery and now we still had to go through with it.

However, it was obvious to us that she had little or no depth perception. When doing a board puzzle she would put the correct piece near the space and the randomly slide it around until it clicked into place. We had her using sippy cups because she would try to put her cup on the table and miss it by an inch, the cup crashing to the floor. We could see it when she was walking with us. If she got to a change in surface, even a different color tile, she would pause and test it with one foot to see if she could contiue or needed to step up or down. We hated the idea of surgery, but we could see how it would improve her life if it worked.

See how her left eye is drifting?

In retrospect it was a relatively minor procedure, but at the time it was very scary. I remember waking up at 5AM to get her ready. I was worried that she would be hungry, but she was so sleepy that it wasn't an issue. I bundled her up in her favorite fuzzy blanket, put her in the car in her pajamas and drove the hour to the surgical suite.

Now I know that surgery that doesn't require hospital services is generally considered safe surgery. If the doctors can perform the operation in an outpatient surgical suite they have all of the necessary safety equipment and an anesthesiologist present, but don't expect any complications or an overnight stay.  But I didn't know that then.

We checked in to the office at 6 AM. After waiting a few minutes we were brought back to a pre-op area. We waited in our own space with 3 walls and a curtain for privacy. There was a gurney for Amanda to lie on and a chairs for us. They let Amanda stay in her own pajamas. They gave her a little "loopy juice" (versed) to make her sleepy and help her forget the procedure, then they covered her with a warm blanket and wheeled her through the curtain.

I stayed with her as long as they would let me, holding her hand all the way to the doors of the surgical suite. When the doors closed behind her I realized that tears were streaming down my face. Amanda had only been away from me while she was at school. I felt so helpless with her out of my sight, out of my control.

My husband was surprised that I was crying. He knew logically that it was a short, safe procedure. All I knew was that my baby was being hurt. In that moment it didn't matter that it was the right thing to do.

It really was a quick surgery. It think the actual procedure lasted about 30 minutes. After that she was in recovery for another half hour or so. We left the surgeon's office by 10AM.

At first Amanda's eyes were blood red. It was kind of creepy, but the blood cleared in a few days. Best of all her eyes really weren't drifting anymore. We could see her really looking at things - both eyes focused together. It was surprisingly cool. It made me wonder what the world had looked like to her before the surgery.

Amanda still wears glasses. She has progressive myopia that had nothing to do with the amblyopia and strabismus. Happily, her depth perception is much better thanks to that surgery.

No parent wants to put their child though a surgery. However we've learned that if there is need for surgery, there is no point in waiting. I don't think doctors lightly suggest surgery. I'm fairly confident based on our experiences that they will always try other, non-invasive methods first. Before eye surgery Amanda's doctors tried glasses and patching. Before back surgery her doctors had her go to physical therapy and wear a brace. Only in an emergency will most doctors suggest immediate surgery. When Amanda broke her hip and the doctors said it needed to be surgically pinned as soon as possible we didn't hesitate. She had surgery within hours of arriving at the Emergency Room.

If you are facing non-emergency surgery for your child,  you have the opporunity to alleviate some of your fears beforehand. Sit down with your child’s doctors and ask the questions you need answered to make an informed decision. Ask about the risks of surgery, the surgery itself, how the doctor thinks the surgery will help and what to expect to after the surgery. Ask for an email address to contact them if you have additional questions. I often find myself with questions after I've left the office. If you are still unsure, get a second opinion from another medical professional. It can only help in your decision-making process.

However, if your child needs surgery don't be surprised if the doctors tell you the worst case scenario. For liability reasons they have to warn you about the risk of blood transfusions, comas, even death. THAT DOESN'T MEAN THAT WILL HAPPEN! It just means that there is a risk to any procedure. It may mean that one or more of those things has happened to a patient somewhere, at some time during this specific procedure. In this age of litigation doctors have to warn you of any and all possible risks or they may be sued for malpractice.

And, speaking from experience, if something does go wrong you are in the best place to handle an emergency. Amanda has had a blood transfusion (so have I) without any complications even though it was unplanned. Following hip surgery her lung collapsed. She was treated immediately and although it resulted in an extended hospital stay she has had no long term complications.

I've found that other parents are often the best resources. They will tell you truthfully about their experiences, good and bad.We are lucky to have a resource in the U.S. called Parent to Parent. They have a nationwide network. They will try to connect you with another parent whose child has undergone the same procedure.  We were very lucky to have a family in Atlanta to talk to before Amanda had her spinal fusion. In fact, the mom was so kind that she showed up at the hospital with magazines and snacks.  She even moved a more comfortable chair into the room for me. Talk about supportive!

Now we have been through nine surgeries with several more on the horizon. I say "we" because although Amanda has the surgery it impacts our entire family. My advice is simple. Do it if it is medically necessary to improve your child's health or quality of life. Don't do it casually. Research the proposed procedure online. Talk to the surgeon and other parents. Find out what the recovery will be like and what the potential downsides may be. If you are concerned about blood transfusions donate blood in advance of your child's surgery to be used in an emergency. Do your best to prepare yourself and your child,  then be confident in your decision knowing that you have taken a careful approach. But expect to be scared - after all, you're a parent. Its part of your job to worry about your child.

Am I a Better Person Now? No, Not Really...

Amanda is disabled.  And, yes, I used the politically incorrect term deliberately. Amanda is essentially a 120 pound baby. She walks only with assistance. She doesn't talk. She needs help feeding herself, dressing herself, bathing herself. She still wears diapers. While she has special needs, she needs so much more than that simple term encompasses.

I am a different parent than I would have been if I hadn't had a child with a disability.

I am not a different person, however. I am no more patient than I was before her birth. I have simply learned to act patiently because losing my temper gets me nowhere.

I am just as vain as I ever was. However, I have put myself second to her needs for 14 years. I rarely have the time to put on makeup or the energy to exercise. That doesn't mean that I have achieved some deep inner peace that allows me to be okay with the way I look.

I am still selfish. I want more than anything to do the things I did before she was born - go out with friends, ride horses, work. I just don't have the luxury of acting selfishly.

Parenting requires sacrifice. Anyone with a child knows that. It doesn't matter if your child is a healthy, typical child or one with special needs.

However, parenting a child with a disability changes your life in ways you might never expect. I am always surprised when people compliment me, saying things like "You have such strength." No, I don't. I am weak and vain and selfish. I'm apparently just a really good actor.

Sometimes I think parenting a child with special needs must be a little like alcoholism. The hardest part is accepting that there is a problem. You have to confront the reality that your child and your life will not be like most people's.

 

You have to learn that it's okay to ask for help - financial, educational, emotional... And, its okay to accept help you didn't ask for. For me, one of the hardest things was learning to let someone else give me a break sometimes.

 

I remember struggling with the concept of accepting aid when Amanda was little and I first considered applying for Medicaid. A combination of pride and the sense of permanence -the idea that if I put it on paper it would be real - prevented me from filing the forms initially. I finally decided that it was no different from accepting a HOPE scholarship - especially as I knew she was unlikely to ever attend college.

I remember sitting in the Welfare Office with my then 2 year old, waiting to be interviewed. It was winter and the room was filled with people waiting for heating assistance and food stamps. I almost walked away. Not because I didn't want to be near them, but because I hated the idea that if Amanda got Medicaid someone else might be cold or go hungry.

I'll never forget an elderly lady, dressed in clothes that were clearly cast offs asking me if she could pray for my baby. There she was, cold, tired, possibly hungry - and she wanted to pray for us. I was stunned by her generosity. That was the moment that I knew it was okay to accept help.

I am not a better person because of Amanda's disability, but I do think I'm a better parent than I would have been.

Are We Alone?

Amanda has a genetic deletion (monosomy) on chromosome 15 (q21.2-q22.3). When she was first diagnosed in 1999 there was very little information on her chromosomal deletion. We were given one article starting with "There have been only four reports of deletions in the more distal 15q2 region,2-4 all involving severely handicapped infants." Looking at the chart two had passed away by their 3rd birthday. Discouraging news for new parents.

Amanda not only survived her third birthday, she thrived. Although her development was delayed she continued to grow and remain healthy. She started walking at 5 1/2. When tested at age 10 her development was on par with a typical 2-year old, causing her to be classified as "severely delayed." Still she was progressing and, most importantly, she was healthy and happy.

However, we have been alone this entire time. We have never met any one with a similar chromosomal deletion. There are no support groups when you are one of six known cases of a disorder. There are no marathons for financial support. No special T-shirts or car magnets. No one to talk to.

Amanda's life has been a series of unknowns. Will she walk? Will she talk? Will she need surgery for this or that? Without a network of other families we've just had to wait and see, always hoping for the best.

I worry because the ages of the survivors in the paper we were given were 15 months, 14 years and 18 years old. The article came out in 1990. The oldest would now be forty. I hope they are all well, with happy and fulfilling lives. But there is no way of knowing.

Recently I've noticed what seems to be a slight deterioration in Amanda's overall health. It is nothing serious, but enough to concern me. For instance, last fall she had several clonic/tonic seizures (grand mal). I wish I had someone who had been through this before me. Someone who could say,"it's okay - its just part of the syndrome sometimes." But I don't.

oxygen converter

Amanda has always had some breathing issues. Having been through multiple surgeries we know that she takes a while to come out of it after sedation or general anesthesia. We expect it and don't worry about her coming back to the room on oxygen - her pulse oxygen level in the low 80s. However, last year after hip surgery she unexpectedly crashed.

Doctors and nurses rushed into the room with a big machine. It turns out she had actelectasis - her right lung had collapsed. They moved her to pulmonary ICU. She got breathing treatments. Every few hours she had to go through percussive therapy. She was released after five days in intensive care. She came home with canisters of oxygen and a huge, purring oxygen converter.

Later that year, while sedated for a bone density scan, she became cyanotic three times in eleven minutes. I was in the room since no one had expected complications. Watching the doctor and nurses rush to clear her airway and provide oxygen three times was not fun.

Look at the bluish tint around her eyes -
even on oxygen she was cyanotic.
 

Finally, last week after a relatively short time under anesthesia (less than 2 hours) for a CT scan and MRI she returned looking cyanotic. Her nail beds and lips were bluish. The area around her eyes looked bluish gray. Her breathing was obstructed (like intermittent snoring) even though she was on oxygen.  There is something extremely frightening about listening to your child struggle to breathe. Breathing is so simple and fundamental. It's autonomic; it's not supposed to be a struggle.

I wish I knew there were others who had had these symptoms as well. I wish I knew if they are typical for her condition or if they may indicate something worse on the horizon.

I've always considered Amanda one of the lucky ones because she survived infancy. I assumed that if she made it past that critical period she would be more or less fine. Now, I'm starting to wonder what to expect. I wonder how those other survivors are doing. What are their lives like? Do they have the same symptoms? Have they had the same surgeries?

I've been on a quest to find other survivors for the past 3 months. I was thrilled to find two with close chromosomal deletions. One is a boy with a nearly identical deletion. Happily, he is also 13 - and luckily has far milder symptoms. He is walking, mainstreamed in school and very healthy.

Encouraged, I realized that where there was one there might be another. I researched every rare chromosome group I could find on the Internet. I believe that I have located four more individuals with a similar deletion.  That brings the number of documented instances of this particular chromosomal deletion to eleven!

I have no idea how old these children are or what they have been through. I've been able to get some contact information so I've reached out to them. Hopefully they will respond.

I hope I hear from the other families. I hope we can share stories and provide support for one another. I am so grateful that we are not alone anymore. Maybe we can get T-shirts or have a marathon some day.


Looking for a match to Amanda's rare chromosome deletion I've found the following resources:

http://www.rarechromo.org/html/home.asp

http://www.chromodisorder.org/CDO/

http://www.rarediseases.org/

http://www.rareshare.org/