PSA- Visionwalk 2008 approaching

This post is dedicated to educating everyone who is unfamiliar, with the Visionwalk. Alex and I have been involved with the Foundation Fighting Blindness for several years, as this group funds vital research for the disease that is robbing Alex of his eyesight. Alex has Retinitis Pigmentosa (RP), which is a congenital, degenerative retinal disease (try saying that 5 times fast!). He has suffered from vision issues his whole life but was not properly diagnosed until he was 21 years old. The doctor then told him he'd be in his 60's before he had to worry about actually being blind.

Fast forward 11 years, he's 32, is legally blind, and uses a cane to get around the city in anything other than broad daylight. There are many ways that RP is affecting his vision. Because of the "multifaceted" nature of this disease, it is extremely difficult to diagnose, treat, study, and find a cure for. Much hope is being placed in stem cell therapy, one of the many reasons we banked Charlie's cord blood when he was born.

Below is a picture of what a normal person would see if looking at these two cute boys:

And now here is what someone with RP would see, assuming this is broad daylight. If the lights were dimmed even a little, the central vision gets worse and worse with the lower lighting. Also, Alex and many others have many cataracts that cause blurriness in his central vision:

As a result of this, he is constantly scanning his environment for obstacles, and often bumps into and trips over things (dogs, kids, furniture) in unfamiliar places. He hasn't driven in 7 years and it is difficult to eat at restaurants with the mandatory "mood lighting". He does not read for leisure, only what he has to at work and with that, he blows it up in large font on his computer. Alex leads a very active life but his vision is quickly failing him.

The FFB raises money to fund research that is looking to find a cure for this, and many other degenerative retinal diseases. The Visionwalk is their signature event that was started several years ago in some of the bigger cities. Last year was the inaugural Philadelphia walk and we had a great turn-out with many teams and several hundred people who came, including Vince Papale. I was one of the main chair-persons of the walk and we had a team of 25+ people and raised over $12,000. The walk totaled over $80,000. It was a huge success for a first walk. This year, the walk is being held on Saturday October 11th in Fairmount Park (Forbidden Drive area). Here's some pics of last years walk. Our team (as it is this year) was called The World According to RP:

You can find out more information by going to www.visionwalk.org. Click on the Philadelphia walk, click on our team name, and read our story (although I guess you just did!). Every donation is greatly appreciated, no matter how small. Many people giving $10 adds up to a lot of money. If anything, let others know about this organization, consider coming out to walk with us, or form your own team and help us keep a cure in sight!

He didn't drink it, but he tried!

We went to LBI this weekend and spent time with bubby and zayda (Alex's dad, and Janice). We had a nice time and the weather Saturday was fantastic while Sunday was great until noon when the world appeared to be coming to an end! The weekend started on Friday evening with a few beers that Charlie desperately wanted to try. Sorry kiddo, a few more years!


He was hamming it up for the camera while we hung out before dinner.

The next morning when I asked him to get ready for the beach, he grabbed his swimsuit and pull-up, but this is as far as he got on his own. Pull-up=hat in his mind...his silly mind that is. He really likes to make us crack up which leads me to think he's a lot like his daddy who's a total jokester!

Daddy time on the beach...

Today we had a busy day already. Charlie had his first dentist appointment which went well. His teeth look good and there's no concerns for his little toddler mouth. We then jumped in the car and went to Downingtown to visit my mom and sister at A Basket Case. We were picking up a basket that I ordered and going out to eat with the family. It was a nice lunch, and then I spent 45 minutes on the ride home tickling and singing to Charlie so he's stay awake. I'm pretty sure he thought I was on crack! He's now napping and I'm supposed to be getting stuff done before a three night stretch at work. Instead, I'm blogging!



Here's a picture from the other night at work of me holding little Jaiel Amare Lapp Yoder. He's such a cutie! They are home and seem to be doing well.

Hope everyone had a good weekend! Stay cool this week, it'll be another hot one!

I love my boy!

Moments like this are ones that make you smile ear to ear even if you haven't slept in 30 hours and are planning to be awake at least 10 more hours. He's just the cutest!
We went for a walk and saw Alex's work and Charlie got to take a gander at the view and was fascinated by all of the air conditioners he saw on the roofs. Forget the large rivers, the tiny cars, the thousands of buildings...it was the air conditioners...and he knew that they were, in fact, air conditioners. On our way home the local firefighters were holding a fundraiser for Muscular Dystrophy and Charlie was so excited to see a real firetruck up close with real firefighters outside of it. Especially because just an hour earlier his legs were plastered with firetruck stickers that Aunt Kim bought him. We are off to LBI tonight for the weekend. Hope everyone has a nice one!

Spraygrounds...the urban reality

This morning we ventured out in the oppressive heat for a fun morning at Segar playground which also has a Sprayground. This was Charlie's first time at such a place (we've been to Segar many times but never when the water is on). We started out playing on the equipment for a while, giving the maintenance people some time to clean up the sprinkler area.


He threw himself down slides and ran around chasing his new ball...

and then the water got turned on so he changed in to his super cool lobster swim trunks and he was off...

He ran and ran and ran until he couldn't run anymore.

We had a great time and came home drenched from walking in the heat...he crashed immediately and awoke in a decent mood...that is until I asked him to clean up his toys which is when his almost-three-year-old evil twin emerged and had a decent fight with me. Mommy won but was a little broken after the 45 minute encounter. I am really looking forward to him outgrowing this "phase".

Now I am at work and got here early enough to head upstairs to see little Jaiel (Jai) who was born to Tony and Ana Lisa. They're the ones I asked you to send good thoughts in my last post. Well, little Jai was born and is healthy and the parents look great. He's a beautiful baby and he cried when I held him. They said it's the first time he's done that...hmmm...and most people call me the baby whisperer. Maybe my gift is starting to wear off! Anyway, it was amazing to hold him and I seriously felt like I was looking at and holding a miracle. Congrats you guys!

Hope everyone is surviving the heat. I think it's supposed to break after tomorrow. Let's hope so!

Exercising patience

The weeks are flying by and all of a sudden, it's the middle of July and Charlie is closer to 3 years old than he is to 2 years old. We are having a great summer and his asthma really seems to be controlled as he is able to play outside in the humidity without wheezing and huffing and puffing. He seems to be maturing alot in his "play" activities. He does a lot of imaginative things on his own (pretending that apple slices are Grandpa's boat, having real conversations on a pretend phone, tucking his cars in bed to take a nap, putting his firetruck in time-out). He even likes playing with his train set the way it was meant to. He can use the remote control and everything. The train in the picture above is a firetruck train...super duper cool in Charlie's book!
I watched Danny and Grace (my other babies) last night and came home this morning to my boys getting buff. Alex had gotten up early to run on our treadmill and when Charlie woke up, he decided that he wanted to exercise like daddy had done. He got a kitchen towel (Alex had a towel he uses to mop up sweat) and did sit ups with Daddy...

...and push ups with daddy, and they also did jumping jacks. I was cracking up!

He talked all morning about how he exercised with daddy and had a towel. What did I do today? Not much. I steam cleaned to carpets...fun times all around...and decided that shoes must be the dirtiest things in existence and that anyone who comes over from now on has to leave their shoes at the front door. We are pretty clean people and I just did the rugs 6 months ago, but man oh man were they gross! I also had lunch with my sister-in-law (Kim) and we all went out to dinner tonight after Alex was off of work. Charlie loves to eat out which I think is hilarious because Alex loves to eat out as well.

this is Danny last night...

And this is Grace cracking herself up. I actually got a belly laugh out of Danny which was adorable. He almost seemed afraid when he first laughed, like it scared him. Too funny!

Yesterday I had a wonderful day that involved some shopping (forever spoiling my nephews Bode and Ethan, and my own child), lunch with my husband, and getting a manicure and pedicure and eyebrow waxing. It is very hard for me to sit still for an extended period of time, and it's equally hard to spoil myself, so I was proud and felt very good afterwards! My two toenails that I lost with the marathon have not grown completely back but are come back slowly!

I posted some pictures of some new patterns available on Keiki Cloths today. This past week I have 7 or 8 new patterns that I think are all adorable! My favorite, is the Malibu Monkeys. Check them out if you are interested or know anyone who would be!

I have a favor to ask of all of you readers as well. There is a blog link on the left of this page for the Lapp Yoder Family. They are a family I know from working in the NICU. Their son Javid was born at 24 weeks weighing 15 ounces and died after almost 7 months of fighting for his life. He was a sweet boy and they are sweet people. Ana Lisa is pregnant again, with a little boy, and turned 37 weeks today! YEAH! She is having an amnio done tomorrow and is scheduled for a c-section on Monday to deliver her baby. She and Tony have been through hell and back and are now embarking on a different journey. If you can, think of them, wish them luck, pray for them, send them good vibes, whatever you can do. They deserve for this to be smooth sailing. They deserve to hold a healthy baby in their arms once he is born and take him home to sleep in his bed. They deserve to be sleep deprived from night-time feedings. I am holding my breath hoping that all goes well for them the next few days. Good luck guys!

It's been a good week!

We have had a great week in the Cohen house. It seems that a week at the beach was what we all needed...Alex and I got some chill time and Charlie came home acting like a new little boy. He has had very few tantrums, has taken to sleeping in his bed like a big boy and not getting out a million times before finally crashing at 10-11pm. We can now put him in at 8 and he's asleep by 8:15. Naps are similarly easy, and he's been a general pleasure to be around. I'm not questioning why, just glad that he's had a change of heart. Last night we went with our friends to Chima which recently opened in Philly. It was great and a lot of fun but it's always a little weird, me being a pescatarian, going to a Brazilian steakhouse where men carry around large trays of meat that they carve onto your plate. This particular one had two fish options which was nice, and a lovely salad bar that had lots of options. Above you'll see the chips you use to tell the waiters to bring you more meat or stop and let you digest. Mike and I thought they'd notice them more if we had them on our foreheads. Very mature and sophisticated we are!
Today Charlie and I met up with his friend Henry and his mom to go to a very cool playground at 6th and Arch. I think it's called Independence Park but I could be lying. In any event...it was a nice long walk, the weather wasn't too hot and there's lots to do there. Here they are wishing they could swim in the fountain.

Here's Charlie showing off his swinging skills.

Here he is trying out his new "running shoes". He outgrew his size 8 shoes and I had several size 9's in his closet that I had gotten on sale in the past. I was getting out a different pair and he saw these and insisted on wearing the "running shoes". They are Newbalance and look a lot like mine and Alex's running shoes...isn't it funny the connections they make! So he loves them and thinks he runs really fast in them. Best part, they were $10 at Marshall's last year. Score!

The boys chilling in their strollers. Henry will be starting at Charlie's school soon which will be so cool! Hope everyone has a great weekend!

See new Keiki Cloth Patterns

If you are in need of a fun/unique/homemade baby gift, you can visit my other blog and check out the new patterns of burp cloths available for the baby's burping needs. I will tell you that they work, are very absorbent and withstand countless washings. I watch a set of twins (the pictures in previous posts of the cute little twins...) whom I cared for in the NICU. I gave their mommy several samples to use and abuse with the babies and they are holding up quite nicely six months later! Danny has reflux which means that a lot of his bottles come back up and the keiki cloths are a nice shield to have between his mouth and your clothes. They are also venturing into solid foods and the burp cloths are a great weapon against stained clothes! If you have any questions or are interested in ordering, please email me at sbode1@excite.com. Thanks for reading my little self-promo piece...now back to your regularly scheduled program...

This is what happens...

...when you leave your son at the beach for the weekend with his father and Grandparents...my poor boy! I'm sure the Hooter girls loved him though!

Pictures from my time at the beach

I had to come home from the beach today so I can go to work tonight and the next two nights after. Charlie stayed behind with my parents and Alex is on a train now heading down there to spend the rest of the weekend with all of them. I am sad to not be there but glad we had as much fun as we did...thanks mom and dad for everything! SO on to the pictures...above is a sample of a ride that Charlie rode on the boardwalk. The firetruck was his favorite but a close second was the motorcycles...he loves the rides!
This is Charlie and "Gampa" clinking cheers. Charlie is holding the sippy cup of water while Gampa opted for the monster margarita...fun times!

Charlie and Gampa studying the sand and water. The boy has no fear of the water. It was chilly but very refreshing!
Charlie patiently waiting to board our boat.

The boat was a Christmas present to the family two and a half years ago. It is named after my sister and I...my middle name is Kealoha and Christy's middle name is Makai.

Piloting the boat with Gampa...

Hangin with Tutu

What a life this kid has!

Running on the beach...his favorite thing to do!


PS-I also put up some new pictures on my other blog...photography explorations if you want to check it out!

Greetings from Dewey Beach

Charlie and I are currently hanging out in Dewey Beach and we are having a ton of fun. I am down here till thursday with him and my parents and I leave to go home and work the holiday while Alex takes the train down to hang out the rest of the week and weekend. Charlie is having lots of fun and I'm getting to try out the camera quite a bit. Today, we went out on the boat and had a very nice time. He's napping now and we'll go out to eat and on the boardwalk later. He had a great time at the beach yesterday where he has proven to have no fear of the water or the sand. It's fun but scary considering how fast he moves and considering how well 2 1/2 year olds listen. No pictures for you but I'll put plenty up when I am home and able to upload them. Wanted to wish everyone a happy and safe 4th of July!