Saving a Limb is Overwhelming... Joy

This weekend was the Save-A-Limb Ride/Walk and if I had to sum it up in one word it would be Overwhelming! And here's what I mean:

(this is Mickey with his Fixator; a brace JP will have in the next yr to year and half)

1 - Overwhelmed by the amount of amazing people that Keith and I have in our lives that donated to our team. We initially set out to raise $500 and far exceeding it! Final total is $1610! We had close friends and family, but also friends from long ago; middle school and elementary school classmates that we hadn't talked to in ages. It just shows how amazing people are. Everyone that donated to our team has a special place in our hearts!

2 - Overwhelmed by the thought that just a year ago, I was just given some of the hardest news for a parent to hear; there's something wrong with your child. We had come across Sinai Hospital's RIAO and the Save-A-Limb Ride about a week after we found out about Jonathan and his Fibular Hemimelia. We had thought about going down, but at the time the emotions were still too raw. A year later, here we are with our beautiful, healthy baby boy and thrilled to have participated in this event.

3 - Overwhelmed by the fact that these Doctors are just great amazing. Dr. Standard and Dr. Herzenberg are among pioneers for surgically saving people's limbs. We had the opportunity to meet both of them and they took the time to speak to us, learn about us, and just give us their consultive opinion and tell us how confident they are in the doctor we chose (who did her fellowship with them).

4 - Lastly, overwhelmed by the work these amazing doctors, nurses, radiologists, therapists, social workers, staff, etc. do. We were fortunate to attend the fundraiser dinner. Dr. Standard gave a quick presentation on the many things accomplished thanks to the money from Save-A-Limb both here and abroad. It brought tears to my eyes. These kids are amazing and braver than most adults I know. We saw kids in 2nd and 3rd world countries that walked on hands and knees initially suddenly walking "normally" after the treatment from the RAIO doctors who go abroad to provide care (some of these docs give a week of their vacation to go to other countries and help those that wouldn't be able to get care like in the US). The money also helps US based families who can't afford the surgeries, who's insurance doesn't cover the "best care" because it's out of network. 

I found myself throughout the day getting teary eyed. It wasn't really sadness, but joy. Joy that this organization exists. Joy that these amazing doctors exist and train others to do similar work. Joy for the 3 other families just like us who have a child with fibular hemimelia (FH) and one family who's daughter has Tibila hemimelia (TH) that we got to meet at this event. 

We got to meet  (whom we consider the celebrity of FH) Nicholas Curley and his mother Jen, as well as his the rest of the amazing family. Nicholas has gone through several surgeries and shows everyone that FH is nothing to hold you down. He's a typical pre-teen adolescent and his mom, Jen, was the first one to give us comfort when we had no answers. She writes the blog No Fibula, No Problem (http://fibularhemimelia.wordpress.com) and it provided us with an amazing sense of comfort and encouragement last year and now we feel blessed to know them and have them close by!

We also got to meet two brave little girls that have undergone their first surgery- a super ankle and the straightening of their tibia (which JP will undergo as well). One was Indigo, I believe she's around 5-6  and let me tell you, there was no stopping her. She currently has a brace on her ankle and lift on her shoe, but she was running around and climbing at the playground. (Below is a pic of her Mom and us, along with her younger sister. (she was even too busy to get her pic taken - LOL). And we met little Emma (below is a pic of Aiden and her) who is 16 months old and had her surgery late this spring.  Emma was walking around like any other typical toddler exploring and getting into trouble. And then we met a beautiful little girl, Lacie who has TH (basically the opposite of JP's condition) and her lovely family. She also hasn't started treatment yet, but is the cutest girl ever!

We feel so blessed to have wonderful family and friends that have supported us from day one; encouraging us, lifting us up, and most importantly loving our little boy. But we also are so blessed for this event and meet families like ours going through treatment, having milestones, happiness and joy, as well as sadness and pain. 

So, we're super excited for next year. Our goal over the next few months is to make Miles for JP bigger and badder. LOL! In all seriousness, we're hoping to design a logo, make T-Shirts, and a branding site. So stay tuned... we're about to take off!

To all those that contributed to our team this year, again, from the bottom of our hearts, Thank You! You're amazing!

Pumpkin Picking 2012

We took our annual trip to Milky Way Farms with our close friends The Grahams. This year Keith couldn't join us because the first day we planned on going it rained and he was in AZ for a gig the day we ended up going. It still was a great day full of memories.

The Grahams have two kids- Ava (age 7) and Colin (age 3) who's Aiden's best bud. I'm sure you guys have heard a lot about them. The day we went was pretty chilly, but the kids didn't seem to mind. The kids loved looking at all the pumpkins and trying to pick them and of course we always cap off the trip with Ice Cream from the Creamery!

Aiden also had his first school field trip a week ago!! He and Keith went to Highland Orchards in Downingtown. Aiden loved to be hanging out will "all his friends" from school. The kids got to pick apples and a gourd. They also made apple cider and got a donut at the end...which I'm sure was his favorite!

Moving into Fall....

We're so excited to see the leaves changing, the temps becoming a bit cooler, but the sun still being warm. I love these months before it gets really cold. The change of seasons are always so nice (except for winter).

And with the change of season...comes illnesses. We have already had our first cold of the season which  took down both kids...pretty hard. Aiden had wrapped up his first week of preschool and on Saturday the cold struck, but with it also came croup. This is typical for Aiden, but his croup symptoms were so bad that when we took him to the Pediatrician office, they had us go across the street to the hospital for nebulizer treatments because his blood pulse ox was so low. 7 hours in an ER with a 3 yr old is not fun....and then when you put them on steroids it's just crazy. They decided to admit him overnight for observation because of his reaction to the steroids and some questions regarding his blood work....we were not ready for that! To top it off, Jonathan was also sick and Keith had to take him to the Pediatrician for a nebulizer treatment too! Luckily his blood pulse ox was much better than Aiden's so no hospital for him. Both kids had to have inhaler treatments for their croup for over a week. Keith and I were wiped to say the least.


For almost the last year (since finding out about JP's condition), I have been trying to prepare myself that my baby would be in the hospital hooked up to monitors and getting IVs.....I just didn't think it would come this quickly or be my oldest baby!! But Aiden was so brave! Never did he once cry or get upset with any procedures, X-rays, or IVs they did. It was amazing (and I'm hoping his brother will be just as strong when his time comes)! In the end, he's back to being healthy, all is blood work was perfect, and I don't think he wanted to leave the hospital- LOL.

                                                 Jake Costume Number 1...a little to small

                                                   Jake Costume number 2- AWESOME!

Also Jonathan has been going through some changes this fall. He now sits up on his own, but not only that, he army crawls too! He's getting so fast with it. I can't turn my back for one second without him being halfway across the room...like the one day he crawled into the bathroom. We also catch him on his hands and knees a lot. Typically when he’s on them he just rocks back and forth, but we have seen him take a few paces crawling. It's very scary...Aiden never really crawled, he just pulled himself up on things and walked around furniture and initially  he wasn't fast or daring! Jonathan is definitely going to be our troublemaker!!

Lastly, we just had a few road trips. We went up to the PA Ren Faire a couple weeks ago with our friends The Grahams and Nicole & Frank. It was a gorgeous day and a great time! The kids got some fresh air after being sick and Ava, Aiden & Colin had a chance to run around. Here's a few of my favorite pics from that day..

                                                       Colin and Aiden- Best Buds

                                               JP hanging with Uncle Frank and Aunt Nicole

                                                       JP and Nicole loving their hoodies

                                                     Mommy and baby waiting for the show

We went to the Jersey Shore this past weekend too. We are very fortunate that a close friend and their family offers us the opportunity to stay at their house occasionally. The house is located in the Villas near the back bay and only moments away from Wildwood. We always have a great time down there and love their house.

The weekend started out a bit chilly, but that didn't stop Aiden from wanting to go the beach. We walked over to the bay and let him play in the sand for a little bit. JP also loved the beach this time (a bit different then OBX, but it might be because it wasn't blazing hot). He decided he wanted to "walk" on the beach and just smiled ear to ear.

 

 

We went up to the boardwalk Sat and Sun to allow Aiden a chance to go on rides (which he loved so much!) and enjoy the fall sunshine. On Sunday, we got to meet up with friends we haven't seen forever, Steph and Paul, as well as Keith's brother and sister in law and the kids. Aiden was thrilled to go on some rides with his older cousins Natalie & Marc! They are so sweet to join in on his fun. Keith and I on the other hand got to love on our littlest nephew Matthew, who's a couple months younger then JP. He's absolutely so adorable and a little cuddle bug.

                                                              Fun on the boardwalk

                                                                Baby Bumper Cars!

Race Car Driver Aiden