Wednesday, July 25, 2012

The Sweetest Words I Never Heard-- Joey Signing Mama & Unconditional Love

I had a great email conversation with a fellow mom.  We "talked" via email about how there is so much more to communication than "talking" or "speaking."  In fact, communication includes body language and facial expressions as well.  She had such a great point.  So many times Joey might not be able to verbally "say" what he is trying to "say," but we often get the point! 

Here is a video progression of trying to get him to sign Mama.  The phrase Mama has been a bit of a point of contention.  Joey has been saying Dada clearly, precisely and constantly for what seems like forever now.  It was his first word and for a long, long time it has been his only word.  Then he started saying, "Hi, Dada!"  While I was impressed and equally perplexed that he could put two words together, I was also getting increasingly annoyed that it's all about Dad! 

Then I get annoyed at myself for getting annoyed that Joey can't say Mama.  I mean really-- what is wrong with me?  Why do I feel so entitled to hear him say Mama.  Why can't I just be happy with what he is able to say at this point in his life?  Is it an ego thing?  What exactly is it about parents that we want to hear our children say Mama or Dada?  Ultimately, it doesn't really matter.  Being able to say Mama isn't going to help him get more food, more milk or more of anything that an almost-two-year-old wants.  

Instead, I've decided it's more than just wanting to hear him say Mama.  It's actually not an ego thing.  It is a connection thing.  It's that after everything I feel he and I have lived through together (c-section, gestational diabetes, heart surgery, eye surgery and more), I just want to know that he and I have this connection and that he knows in his heart who I am and that I will always be there for him.  I want him to look at me and think, "Hey-- that's the lady who takes me to all my appointments, who tries to teach me sign language, who feeds me, who tickles me, who bathes me, who reads to me, who takes me to the library, who snuggles with me, who dries my tears."  

Isn't that what we all want our children to recognize?  And isn't that what's really so bittersweet about parenthood?  That so much of what we do is thankless, but priceless.  So much of it can never be truly quantified in any number or dollar sign.  That we do it because we love unconditionally.  We love without boundaries.  We love without requirements.  We love without putting expectations on our children.  We love them for who they are and how God made them. 

In turn, we hope that others can love us the same way. 

In the meantime, Joey has made some incredible leaps and bounds with his sounds.  We are hearing n's, b's, v's, l's, o's, a's, i's and much, much more.  He is now consistently waving hi and bye.  

And over the past ten days or so I can say he has started signing "Mama" with meaning. From the American Sign Language:

Make the sign for "Mother" by placing the thumb of your hand against your chin.  
Your hand should be open (a "5" shape).

Note: there are several variations of the sign "MOM."   
An interesting method I've seen is to place the tip of the thumb of your right "A" hand on your chin then open the "A" hand into a "five" hand.
Some people wiggle the fingers while signing MOM.
Some people use a double tap on the chin.

Last week at the swimming pool I was telling a group of ladies that I thought he had started signing Mama and then out of nowhere he signed it right in front of them!  As we all clapped and I got teary he started clapping proudly for himself as well!  This week he did it again at the doctor's office and then again today at the Buddy Walk office. 

The best part is how proud of himself he is when he does it.  He smiles from ear to ear and wildly claps for himself.  The other best part is how he does it in his own very Joey-like way.  He simply places his hand up to his mouth so sweetly and so gently it moves me to tears every single time.  Here is a video progression of be trying to get him to do it camera. 

Hope you enjoy!  Hope you also get to both give and receive some unconditional love today.

And..... the big finish!!!!

Friday, July 20, 2012

Tommy's Ode to Super Heroes and Trying to Get Joey to Sign "Mama"

This is the first in a series of videoed attempts to get Joey to sign "Mama".  We have also been trying to get him to verbally say "Mama" for months now, but he is quite happy sticking to "Dada".  

I started out with trying to get him to sign it before his bath tonight, but then I had to refocus my energy (a wonderful lesson to all moms-- actually to all of us-- I think it falls under the "go with the flow" category) when Thomas Henry started singing his own little ode to super heroes.


More videos to come as well as a post on strategies for parents of non-walkers...although I'm trying to come up with a better term because while Joey is technically a non-walker right now-- he will walk someday.  Any ideas?

Happy Friday! 

Monday, July 9, 2012

Last Call for 2012 Joey's All Stars Buddy Walk T-Shirt Orders

We are super excited to support The Up Side of Downs as well as the National Down Syndrome Society by participating in and raising money for the 2012 Northeast Ohio Buddy Walk!

As part of our fundraising efforts we are selling Joey's All Stars team shirts again.  They are the same as last year's shirts, but in addition to the regular team shirt (which will have 2012 on the front this year) we are also selling women's tank tops and long sleeve technical tees (like the kind you get when you run).

If you would like a team shirt to wear at the July 28th Buddy Walk, please email your order by Wednesday, July 11 at 10pm EST.

The regular T-shirt is available in Youth S, M, L as well as in Adult S, M, L, XL, 2XL.  The shirts cost us $6 plus tax to make and we are selling them for $10.  

The long sleeve technical tee (which runs a little small) is available in Adult S, M, L, XL.  These cost $15 to make and we are selling them for $20.

Finally, this year we also have women's tank tops that cost $12 to make and we are selling for a $17 donation.  These are available in S, M, L, XL.

If you would like to support Joey's All Stars you can make a team donation here.

If you would like to purchase one of the team shirts, please email me here.  We will cover the cost of shipping within the United States. 

All proceeds from the t-shirts will be donated to The Up Side of Downs Joey's All Stars Buddy Walk team.

Happy Monday and THANK YOU to everyone who has donated to Joey's team.  The money raised for the Buddy Walk helps to enhance the lives of individuals with Down syndrome throughout all of Northeast Ohio as well as the lives of the families. 

Sunday, July 8, 2012

How to Prepare for a Stolen Purse or Wallet

You may have seen the movie When Harry Met Sally, Sleepless in Seattle or You've Got Mail.  If you have, then you've enjoyed the work of Nora Ephron who passed away June 26 at the age of 71.  I just read a wonderful article about her in Entertainment Weekly and I came away with one a new favorite quote from a commencement address she gave in 1996 at Wellesley College:

"Above all, be the heroine in your life, not the victim."

At the time I read the quote I was feeling so strong.  Not at all like a victim, but it spoke to me about the choices we have and how we react to what happens to us on a daily basis.

Last night I was a victim.  

We were playing tennis just down the street from our house and it was still light out.  As we all sat down to eat dinner my phone started ringing and with the caller id of "Unknown" on the display.  Usually "Unknown" pops up when there is a doctor's office calling.  Immediately I wondered if Joey's blood work he had drawn on Friday had already come back and was so bad they were calling me at 8:12pm on a Saturday night.  I answered and it wasn't a doctor's office, but it was a police officer.  When he asked if I was Jen I immediately thought someone had died.  Why else do the police call you on your cell phone and know your name? But then he started asking me questions about my purse and what color it was and what brand it was.  I was wondering how he knew all this information about my purse if it was out in the parking lot in my back seat.  I started walking out to the parking lot while he told me that he had found my purse on the side of the road when someone saw it thrown out of a car and called the police.  As I walked up to my car I saw the rear window behind the driver's seat smashed to smithereens.

I walked up and there in Tommy's little car seat was a huge pile of safety glass shattered all over.

On the other side you could still see where the perpetrator had pressed his or her forehead up against the window to look in the car.

I thought it was safe. I had tucked it down on the floor and the back windows are all tinted.

I was wrong.  

Amazingly the police brought my purse back, but my license, credit cards, debit cards, checkbook, sunglasses (arrrgggghhhhh!!!!it is such a pain to find good sunglasses that fit!!), and cash were all stolen.

Then I saw my Buddy Walk envelope and my heart sank. The checks and cash that people had donated so far was all gone. That was when I cried.  

But-- this is why you have to be the heroine of your life and not the victim.

I hope someone else will learn from my mistakes.

I hope you will not leave your purse/wallet/computer in your car.  I have a rear compartment in my trunk space that I will use from now and lock.  

I also hope that you will do one simple step to help make this kind of situation much simpler for yourself than it was for me-- tonight or tomorrow-- make a copy of everything in your wallet and put it in a safe place in your house, so if this ever happens (and I hope it doesn't) you will be prepared to quickly cancel everything.  

In the meantime, here is a story of true courage and heroines (twins!) that will hopefully make your heart soar!

Family with twins facing incredible challenges receives gift from strangers.

Here is a great list I found at Identity Theft Laps that is also helpful if you are ever in this situation:

stolen purse or lost wallet gives an identity thief all the information and documentation they need to take advantage of your good name and credit. Criminals can sell your identification very easily, view the Dateline MSNBC video on our home page to see how quickly and easily it is done. As frustrating and scary as it is, there are many things you can do right now so that you aren’t victimized further.
If you would rather speak to a professional right now here is the number to two of the best services we have ever researched.
LifeLock can be reached at 1-800-543-3562 or from international locations at 1-480-457-4500. Mention promotion code “BestOffer” to save 10% each and every year.
TrustedID is also a great choice and can be reached at 1-800-229-9933
Here is completely what to do if your wallet is stolen.

1. Call your credit card and ATM card issuers.

Request account number changes. Be sure to understand your options here. One option is to call and completely cancel all your cards. This is almost never the right choice. Canceling credit cards that have an outstanding balance, or canceling a whole set of credit cards can have a negative impact on your credit score.
Also, if you simply cancel cards, this may incite banks to maximize the interest rate on any outstanding balance. It is best to contact customer service for each debit or credit card by phone and clearly explain that your card has been lost or stolen. Most banks have plans in place to address this situation.
  • Your hard copy or electronic statements contain the Phone numbers, or call toll free assistance 800-555-1212.
  • Insist on new account numbers, and request transfer of any mileage or other card benefits. Same credit limits (important for maintaining credit score), same or better terms.

2. Open a report with local Police or Sheriff

  • Do not skip this step as it will be an essential piece of information if you do become an identity theft victim.
  • Keep a copy of this police report for your records.
  • Likely questions during the report filing process:
    • When did you first notice your wallet was lost
    • Where do you think your purse was stolen or lost
    • What items were in your wallet or purse at the time
    • Description of the stolen wallet or lost purse
    • Any suspects? Do you have a description?

3. Call all three major credit reporting agencies and request a fraud alert be put on your account.

  • Experian PO Box 9595, Allen, TX 75013-9595 Tel: 1-888-EXPERIAN (397-3742)
  • Equifax PO Box 740241, Atlanta, GA 30374-0241 Tel: 800-525-6285
  • Trans Union PO Box 1000, Chester, PA 19022 Tel: 800-680-7289
  • This fraud alert will require creditors to verify your identity before approving any credit
  • Verification is often done by calling your phone number which will be placed in your credit file when you place a fraud alert.

4. Contact your bank or credit union’s fraud department and report the event.

  • You may be able to combine this with step 1 above, especially regarding ATM (debit) cards.

5. Order and begin a vigilant review of your credit reports

  • Order from Annual Credit Report the only government mandated free service.
  • Look for and investigate any suspicious activity.

6. Report a missing driver’s license to your state’s department of motor vehicles.

  • Re-issue of driver’s Licenses varies by state, ask about your state’s process when visiting with DMV

7. If your keys are missing (Auto or Home) change the locks on your home and car.

  • This important step is often neglected. If your purse was stolen, you have to remember that even if keys and other items are recovered, they may have been duplicated prior to recovery.

8. Begin a written list (inventory) of every item in the stolen wallet or lost purse

  • List everything, credit cards, Blockbuster cards, retail shopping cards, gift cards, cash estimate, lipstick, children’s information, etc. Keep the list with you and add to it, in a day or two you will have remembered nearly every item you had in your wallet or purse. This complete inventory will be very useful in detecting fraud and speeding your recovery.
  • Questions to ask yourself:
    • Were there any blank checks in my purse when it was stolen
    • You didn’t have any account numbers or passwords in your wallet, did you?
    • Did you have any of those little plastic car or house keys?
    • ID cards for daycare or Sunday School pickup?
    • Cards or slips of paper with padlock, mailbox, or safe deposit box combinations

9. Enroll with a reputable Identity Theft Protection Service

This is a recommendation, but we believe in it strongly, and you will sleep much better! Consider enrolling with TrustedIDDebix, or LifeLock. These services are very affordable at $9 or less per month or $99 or less per year, plus, if you do become a victim, you will have an identity protection company to help you restore your credit and good name.
Trust us, you don’t want to go through this experience. It is far more frustrating and stressful dealing with all the red tape and bureaucracy than the loss of your wallet or purse. You also won’t have to worry about when the attack will be initiated, identity thieves may wait anywhere from a few months to a few years. Enrolling will also give youidentity theft insurance or a service guarantee that covers you up to 1 million dollars. If you wait till after an identity theft attack you will not be able to get insurance from anyone.
See our article titled Identity Protection Do I Really Need It? It is packed full of useful information and reveals many truths about identity theft that most people are unaware of.

10. Have a detailed discussion with your bank

According to the Federal Trade Commission, no federal law limits your losses should someone obtain your checks and forge your signature. State laws usually hold the bank responsible in this case, but the Catch-22 comes when they also require you to “take reasonable care” of your account. Stay in the law’s good graces by closing your current checking account and reopening a new one, especially if you lost checks. The bank will notify its internal processors about the now defunct account, but the FTC recommends you call these check verification services to stop someone from using one of your checks at a merchant’s cash register:
  • TeleCheck 1-800-710-9898 or 927-0188
  • Certegy Inc. 1-800-770-3792
  • International Check Services 1-800-631-9656
This is a stressful situation and can leave one feeling violated and angry but knowingwhat to do when your purse is stolen is half the battle. If you act quickly using the guidelines above you can keep it from taking your stress to a whole new level and from becoming a major financial disaster or identity theft situation.
If you have not lost your wallet or had your purse stolen, great! By reading the information above you can easily see why identity theft prevention is the key here! Taking a few simple precautions now can save you time and money if your personal information is ever compromised.
Here’s a few tips that may save you a lot of time, money and stress:
  • Carry only what you need in your wallet or purse. Store all non-essential information in a safe place.
  • Make a detailed list of the items you do carry with you.
  • Never carry your Social Security number in your wallet or purse
  • Never carry account numbers or passwords in your purse or wallet
  • Keep the contact numbers and information for all your financial and personal information in a secure place so they will be available easily if needed
  • Purchase identity theft protection.
  • Choose a service like LifeLock that has WalletLock or a similar benefit. With WalletLock you make one call to 24/7 customer service team if you wallet is stolen or your purse is lost and they do all the work to replace your ID.
  • Remember, its not just the fraud detection or the removal from pre-approved credit cards etc. Its the identity theft insurance or service guarantee that protects you and your money up to 1 million dollars. It’s the credit restoration and protection of your good name. Its the time saving, stress reduction of having someone else on your side in the event you need them. It is the peace of mind knowing someone has your back.
  • If you are unfamiliar with these identity protection plans you can read our Lifelock ReviewTrustedID Review or our Debix Review to learn more about the services from each of these identity protection companies.
  • Also, please read through this website and learn about identity theft. You will find some great tips and hopefully you will come to the understanding that times have changed and that it’s in your best interest to protect yourself from this potentially devastating crime. How you do it is up to you, we just implore you to do something before it is too late. Please stay safe.

Thursday, July 5, 2012

One Small Step for Man, One Giant Leap for Super Joe!

I don't know how this happened.  We worked on it tirelessly last week at therapy until the point where Joey dropped his head due to fatigue and started crying.  Over and over the therapist would try to help him stand up by pulling up to a block. See-- this is a skill that he has not yet mastered.  He will be two in August and until now he has never, ever independently pulled himself up anywhere.  Not up to a table.  Not up to a toy.  Not up in his bed.  Nowhere.  

Part of it is from his heart surgery compromising his core muscles and traumatizing his chest area.  Part of it is low tone in his arms and legs.  Part of it is strength. 

After his eye surgery on Monday and crazy hot day out in the 95 degree day (hmmmm... his discharge papers said quiet activity for a week-- I wonder if the parade with the fire truck and police sirens qualifies?) I never in a million years expected he would try to do anything tonight.

And isn't that what is the coolest part about kids?  They do things on their own time.  We provide the opportunities and the support, but ultimately, it is all about what they are motivated to do when they are motivated to do it.

Poor Tom.  I screamed at the top of my lungs from the upstairs bathroom.  "TOM!!!!!!!  GET UP HERE!!!"  He and Tommy came running up the stairs, wrestled the baby gate as I apologized through tears of joy for scaring him.  "He did it!!!  He pulled himself up to standing!!!"  He did it three times tonight on his own.  This is only the beginning.  We have been told to not expect Joey to walk until he is 3 or 4. For the first time ever, I am truly starting thing he might just surprise us all.  Pulling himself up to standing is just the first step towards walking!

Here is another video we took to take into therapy because for some reason Joey has thus far refused to show his OT just how fabulous he has become at getting in and out of sitting.  Go Super Joe!  Go!

Wednesday, July 4, 2012

Super Joe Does it Again!

Another adventure under our belts!  We arrived at the Cleveland Clinic around 7am and unfortunately the surgery before Joey's ran quite a bit longer than was anticipated and he didn't end up going back to the operating room until about 10:30.  As usual, he was Super Joe and Tom and I tried to keep him distracted from the rumblings in his tummy.

With both sets of grandparents waiting out in the main area we had constant coverage for bathroom breaks and a quick cup of coffee.

At some point while we were talking to the surgeon, one of the nurses did this:

A magic marker dot above each eye to be operated on.  It was hilarious because neither of us noticed her doing it and when we finally did notice we were like, "Did you put those dots on his eyes?" 

The waiting is usually the hardest part, but Joey has such an incredible personality and it was just a chance for use to hold him and play with him for a couple of hours.

When it was finally Joey's turn we had a final meeting with his surgeon and it was decided that we would have the bottom two muscles on each eye cut and reattached during this surgery and then in about three months we will come back to do the top two muscles on each eye.  Apparently, the top muscle procedure is more invasive in that they have to not only cut the eye muscle and reattach it, but they also have to cut it, remove part of it to shorten it and then reattach it.  Joey's doctor wanted to go the more conservative route and just do two yesterday.

For the first time in any of his surgeries/procedures, we were told that one of us would be going back to the OR with him to help keep him calm while they started the anesthesia.  I decided to go (only one parent is allowed back) and donned the blue jumpsuit, mask and hair net.

Joey had a wonderful time pulling off my hair net the entire walk back to the OR.  The OR was super chilly and it seemed like such a large room with so many people for just eye surgery.  I think I counted six people in scrubs.  They had me lay Joey down on the operating table and then they asked me to sing to him and comfort him while they put the mask on his face.  He struggled.  I struggled.  It was hard to watch, but they told us it wasn't for the parent's sake, but for the kid's sake that they have one of us go back.  I hope that he felt some comfort seeing mama as the last person before he went under.

The actual surgery ended up taking almost just an hour and we first went back to meet with the surgeon who said that everything went really well.  We went back out to the waiting area and just about 10 minutes later the Child Life Specialist came out and said we could go see Joey, but to be very quiet because he was still sleeping.  

The only way you could tell he had just had surgery was a tiny tear of red blood in the corner of his eye.  Other than that, he looked like he was just taking a lovely mid-summer's nap.  We settled in thinking he wouldn't be awake for awhile and the nurse told us that if he wasn't awake in an hour that we would try to wake him up.

We both settled into a chair and stared at him.

One of my friends said that I looked so calm in the pictures, and I was calm until about two minutes after this picture was taken which is when the pictures stopped and the you know what hit the fan.

I hate to say it was like out of a horror movie, but literally he went from being sound asleep like this to flipping over, screaming bloody murder and coughing like he was gagging.  We both freaked out.  He was thrashing around, rubbing his eyes (ugh-- the one thing we really have to try to keep him from doing), bawling, screaming, coughing--it was a nightmare.  I told Tom to grab the nurse and she was right in.  Apparently this is why we wanted him to try to quietly wake up.  He woke up like a man on a mission to find out who messed with his eyes.  He tried to chew his IV line off his arm.  I mean seriously-- the next time someone tells me the old misnomer about how people who have Down syndrome are so happy all the time, I might have to recount this story for them.  Joey. Was. NOT. Happy.  At all.  He was ticked off.  

He finally took a bottle of thickened water, the nurse gave him some more pain medication through his IV and he settled down for a little bit.  That lasted for about 20 minutes or so and then he started crying and would not stop for over an hour.  The nurse told us that the older kids say that this procedure makes you feel like you have sand in your eyes for a week or so.  His little eyes had blood-stained tears and they were swollen and red.  

Eventually he finally settled down right after the doctor sent in a prescription for Codeine that we never ended up using.  Once he was a little calmer we finally got him in the car and home.

Today he doing much, much better.  Not really excited about having to do this to him again, but we will do what we have to.  I just wish I could do it for him.  In the meantime, we are putting in his medicated eye drops twice a day and trying to keep his eyes clean.  The right eye seems to be oozing some green icky stuff, so we are going to keep a close watch on that for signs of an infection.

In the meantime, thanks to every single person who sent prayers and love to Super Joe!!!  For the snacks, the cookies, the turkey chili, the wine, the chicken and stuffed potatoes, the yummy BBQ meal, the sweet treats, the moral support and the love for this little man-- we feel so incredibly blessed and fortunate as we celebrate Joey's successful surgery along with our nation's Independence Day.

Happy Fourth to you and your family!  How are you going to celebrate?  

Sunday, July 1, 2012

Joey's Eye Surgery - The Mysteries of Nystagmus

And once the storm is over, you won't 
remember how you made it through, how
you managed to survive.  You can't even be
sure, whether the storm is really over.

But one thing is certain.  When you come out of the storm, 
you won't be the same person who walked in.
-Hanki Murakami

Nystagmus is a weird one.  It is a "repetitive, involuntary movement of the eyeballs, usually involving both eyes" according to my copy of Babies with Down Syndrome: A New Parents' Guide.  It can cause problems with eyesight and in Joey's case, it is also causing optical torticollis.  Optical torticollis means that he tilts his head back to try and steady his eyes from jumping side to side. 

Below are some photos of how Joey tilts his head back about 99% of the time instead of looking at things straight on. 

His eye doctor decided to wait awhile to see if his head tilt would get better and so we've been watching him for about a year now.  After our last visit about a month ago, his eye doctor decided that now is the time to try surgery to help correct Joey's head tilt and to help calm his eyes.  

Will this help him learn to crawl on all fours?  We hope so.  Will this help him be able to stand better?  Maybe.  Will this help his gross and fine motor skills and development.  We really hope so.  The doctor believes there is about a 75% chance of success.

Initially they were going to cut and re-attach four muscles on each eye for a total of 8 muscles.  As of a week ago they were going to start with two muscles on each eye and then do the other two in a couple of months during a separate surgery.  We will find out for sure tomorrow.

This will be the fourth time in the past year that Joey has undergone anesthesia.  The first was at the University of Michigan for his heart surgery.  The second was at University Hospital for his ear tubes.  The third was at Akron Children's for his auditory brain stem response testing and now the fourth procedure will be a the Cleveland Clinic.

I wish I could say it gets easier.  It doesn't.  Each time it gets harder because he is getting older and more aware.  Each time we hand him over to strangers in medical masks I worry and my stomach rolls into knots.  With each procedure Tommy is older and there are more questions to answer from him.

At the end of the day we are doing what we have to do to help Joey be his best self.  Unfortunately, that doesn't usually make it any easier.  

I tried to take some videos to look at his eyes pre-surgery so we have something to compare them to afterwards.  The reason he is in the high chair in the videos is if he is on the ground he is in motion.  His army crawling has taken on a new level of speed!

If you think about it today-- please say a little prayer for Super Joe that his operation is as pain-free and uneventful as possible.  We thank you so very much.