Busy Weekend

Avery is still stable, resting while her esophagus heals. The plan is to start weaning off the sedation meds on Thurs. Kevin and I are still trying to figure out when the best time for him to go to Boston is.
We had a busy weekend. Misty had her house warming party and I think my present was a hit! Here are just a few pics (I did not take a lot of the party, I was too busy chit chatting)

We were also invited over to Kat and Kevin's house for dinner. They fried up a turkey and had all the fixins. It was delish. Aiden also got to play with his BFF, Kayleigh. They had a great time playing outside and in the pool. Luckily, the world did not end and we were able to stay, eat, ,and play!

Indian Breakfast Picnic

Another pretty quiet day for Avery. They took out her chest tube today, it wasn't really draining anything and they did not want to keep it longer than needed since that was what caused this last big ordeal.
Aiden and I had a fun filled today that included a breakfast Indian picnic, a trip to Target, playing "monsters", and three hundred rounds of "show and share". My friend Rick took us all out to dinner. All in all a pretty good day.

MAY 16

My Dad came to visit in Boston on Friday. I originally had grand plans of us hanging out with Avery, strolling her around the hospital. Instead we spend time just gazing at her "sleeping". She is stable right now. They took her down to put in a GJ tube so that she could eat while sedated since her liver and gall bladder probably could not take being on the PN and lipids for the next 2 weeks. I flew home today so I could spend sometime with Aiden. This is going to be the longest and shortest 2 weeks.


MAY 17

Another quiet and stable day for Miss Avery. They were able to
go down on her vent settings a little and they started feeding her
again and she seems to be tolerating that well. Thats really about
all for today. Still looking at keeping her sedated the whole two
weeks.

Have had lots of fun with Aiden today. Everytime I leave and
come back he seems so much more grown up.

They were able to put Avery on the OR schedule today. She has been down there since about 12. Still waiting on an update. Dr. J was not quite sure what he was going to have to do, he needed to open her up and get a better look first.
The Chaplin came by and said another special prayer for Avery and the cleaning lady in the NIC, one of Avery's favorite people, came by and then went and said a prayer for her in the prayer room. Thank you to everyone that has left us a message on this carepage and facebook. It means a lot to have so many people thinking and praying for us during this extremely long journey. I am not as lonely today in the waiting room. My BIG box of chocolate covered strawberries and apples from edible arrangements is keeping me occupied!!

Thank you AMANDA for being so thoughtful. Leave it to another EA mom to know how to get a smile on surgery day. That is one of the positive experiences I will take from this whole ordeal, the kindness of other moms I have met. The EA moms have been nothing but amazing and I am thankful everyday to have been connected with them. Amanda, is one of those fantastic mom's that has been through more than even I can imagine. Her little princess just had surgery yesterday and here she is thinking of me and Avery.
I will post more when I know more. I think they are just now starting on the thoractomy part which means its going to be a looooooong night.

OR Day

Avery is scheduled to go down at 2:30. She had an x-ray early this morning that showed that the stent had moved which can be a sign that there is still a leak. Not giving up though, still waiting for that miracle. There will be 4 options once she gets in there: 1. do nothing b/c the leak has closed 2. try the stent again 3. try the clips again 4. do nothing and schedule the thoractomy to stitch up the leak.
Avery has been in a great mood today and has had a lot of fun playing in the playroom and listening to the lady play the harp.
So say a prayer outloud for her (and another one for her friend Lydia who is also having surgery today).
xoxo,
stacy & avery

Prayers Needed

Avery goes back to the OR tomorrow. Please say a prayer, make a wish, send positive thoughts, channel positive energy, beg, plead, use sign language, send a telegram, use morse code, light a candle, send up flares or use smoke signals. We need a miracle. Thank you!


A Gift From the Chaplin

Thousand origami cranes (千羽鶴, Senbadsuru^?) is a group of one thousand origami paper cranes held together by strings. An ancient Japanese legend promises that anyone who folds a thousand origami cranes will be granted a wish by a crane, such as long life or recovery from illness or injury. The crane in Japan is one of the mystical or holy creatures (others include the dragon and the tortoise), and is said to live for a thousand years. In Japan, it is commonly said that folding 1000 paper origami cranes makes a person's wish come true.

I also got my Mother's Day present in the mail from Aiden and Kevin. A new pair of Rainbows. I know Kevin will be happy to see my old, worn, dirty ones hit the trashcan.

229 Days until CHRISTMAS!!!!

229 sleeps, 5 hours, 28 minutes & 31 seconds ... Here was my Christmas Newsletter I sent out to the relatives this year. We take Christmas (and games) VERY seriously!!!  ;)

Christmas with the Relatives

TOP TEN

(Spring into Christmas by following these 10 helpful hints)

1. An early voting poll has determined that ham shall be on the Christmas menu this year. Other dishes will gladly be accepted, including but not limited to: THE butterfinger cake, deviled eggs, Meagan’s one of a kind beautifully decorated & personalized Christmas cookies, and egg rolls.
2. The no-lister hat will be enforced again this holiday season. Any person(s) not submitting a Christmas list before the deadline will be subjected to wearing and being photographed in said hat.
3. Got theme? By now you should have already picked your Christmas Wrapping Theme and begun the tedious process of gathering matching paper and accessories. Be sure to check Target end-caps, clearance items, yardsales, flea markets, and even consider recycling gift wrap from years past. There is no shame in being “eco-friendly”.
4. The Relatives will be judging again this year with categories like: most original, most beautiful, and most humorous. You have approx. 9 months to prepare your submission.
5. Traditional Christmas with the Relatives Games will be played. It’s not really Christmas unless you play BINGO that’s not really BINGO. We are also on the look-out for a new game. Submit any suggestions you may have to: stacy_ecu@yahoo.com
6. Throughout the year, be very careful on what you tell the Relatives you like. Doing so may result in multiples of these items given to you as a gift. It has been seen in the past where a Relative has left Christmas with a multitude of razors and numerous bottles of body wash.
7. Poll: How did you like the Christmas with the Relatives formal dining experience? Do we want this to be an official Christmas Tradition or was this just a freak anomaly?
8. Reminder: Christmas Breakfast with The Relatives is always held on Sunday morning at 9:00am ish sharp at the Town Square Café and Bakery. Some of us are always in attendance, while others are always a no-show. Show some Ledford pride and show up this year for this annual breakfast get together. It is always a good time and the French toast is to die for (and it’s usually always on Wayne…..yippee!)

9. Dirty Santa 2011 Clarification: Your item must be WEARABLE! Start shopping now! This is always a memorable game. Everyone must participate and be photographed in the Dirty Santa item they have chosen. These are just the rules, I didn’t make them up (well..maybe I did).
10. Downsizing. Yeah, I said it. This is something that some of us may have to consider this year. For those of you unfamiliar with the term I have included a definition. Downsizing (or "excess reduction", "rightsizing", "delayering", "smartsizing") a generic reduction in gift-giving. So some of us may have to downsize in the gift giving department….but we can always up-size with our holiday cheer. Get ready. Some of you may think it is a little early to start thinking about Christmas but SPRING forward, get crackin’, don’t delay. Warning: Dates in Calendar are closer than they appear

Bath Time!

Miracles

Avery and I got a gift in the mail today. Thank you Becky and Missy, we LOVE it!

Boston Pics

It is hard to post a lot of pics on Avery's Care Page because there is a limit of 100. I know I must be getting close so I only post new ones here and there. Today I decided to add some Boston pics to this blog. Happy Monday!

Sandy (another hospital mom) and I were given Red Sox tickets last week. We had a great time. Club level covered, heated seats, with a server, and right behind homeplate.

Pictures from the Boston Trolley Tour I took with Mom, Wayne, Jessica, and Aaron

Here is the Yawkey Family Inn (where families can stay while their children are hospitalized)

Top 20 Reasons Why Moms of Kids With Special Needs ROCK
1) Because we never thought that "doing it all" would mean doing this much. But we do do it all -- and then some.

2) Because we've discovered patience we never knew we had.

3) Because we are willing to do something 10 times, 100 times or 1,000 times if that's what it takes for our kids to learn something new.

4) Because we have heard doctors tell us the worst, and we've refused to believe them. Take THAT naysaying doctors of the world!

5) Because we have bad days and breakdowns and bawl-fests, and then we pick ourselves up and keep right on going.

6) Because we gracefully handle the stares, the comments, the rude remarks. (Well, mostly gracefully.)

7) Because we manage to get ourselves together and get out the door looking pretty damn good. Heck, we even make sweatpants look good!

8) Because we are strong. Man, are we strong. Who knew we could be this strong?

9) Because we aren't just moms, wives, cooks, cleaners, chauffeurs and women who work. We are moms, wives, cooks, cleaners, chauffeurs, women who work, physical therapists, speech therapists, occupational therapists, teachers, researchers, nurses, coaches and cheerleaders. Whew!

10) Because we work overtime every single day.

11) Because we also worry overtime, but we work it through. Or we eat chocolate or Pirate's Booty or gourmet cheese (which aren't reimbursable by insurance as mental-health necessities, but should be).

12) Because we are more selfless than other moms. Our kids need us more.

13) Because we give our kids with special needs endless love, and then we still have so much love left for our other kids, our husbands, our families. And our hairstylists, of course.

14) Because we inspire one another in this crazy blogosphere every single day.

15) Because we understand our kids better than anyone else -- even if they can't talk; even if they can't gesture; even if they can't look us in the eye. We know. We just know.

16) Because we never stop pushing for our kids.

17) Because we never stop hoping for them, either.

18) Because just when it seems like things are going OK, they're suddenly not OK, but we deal. Somehow, we always deal -- even when it seems like our heads or hearts might explode.

19) Because when we look at our kids, we just see great kids -- not kids with cerebral palsy/autism/Down syndrome/developmental delays/whatever.

20) Because ... well, you tell me.

Courtesy: Love That Max

What is esophageal atresia?

What is esophageal atresia?
The definition of EA is relatively simple; it means an absence of a portion of the esophagus, the muscular tube which connects the back of the mouth to the stomach and allows the swallowing of everything from saliva to food.
The answer to the second question is more difficult because EA is not a single uniform birth defect of the esophagus but, rather, includes a wide spectrum of severity. Babies with EA may range from having only a very short portion missing to being born with almost no esophagus in the chest. The upper pouch typically ends in the neck or upper chest and the lower end arises off the stomach and is of variable length. The diagrams in Figure 1 show the spectrum of abnormalities found in EA.
As can be seen, the missing portion is located in the middle of the esophagus and the gap may be short with the upper or lower esophageal ends close together (Fig. 1 C). Or, a great deal may be missing leaving the ends far apart (Fig. 1 A1, A2, B). In addition, there may be a communication with the airway (usually the trachea) from either the upper or lower pouches (Fig. 1 B, C, D) which is called a tracheoesophageal fistula (TEF).

May 8, 2011 Mother's Day

My dream of sleeping in on Mothers Day was squashed by a early morning phone call that Avery had a fever and her heart rate was pretty elevated. Another EA mom and I had gotten a room at the Yawkey (where families can stay..kind of like a dorm room) for a quiet comfortable nights sleep. I got back to the hospital, Avery took a nap and woke up with no fever and lots of smiles. I gave her a bath and spent twnety minutes trying to get the tangles out of her hair....I didn't think I would be battling tangles and knots until she was a little bit older. Sheesh. Then her g-tube starting leaking really bad. It was just changed the other day so we do not know what the deal is with that. Just another thing they are "going to keep an eye on". I keep waiting for my edible arrangement to show up but I think the order got lost (for the fourth year in a row).....No grand plans for the day. I really need to try to get the laundry done, which if you have ever "lived" in this hospital you would know that it is an enormous task.
Happy Mother's Day everyone,
stacy & avery