Reality Check...and Mate!

If there's one thing I have learned in my 34 years of life is that life can throw some face hitting curve balls. I've watched several friends lose a parent way too soon (the most recent being this month), I watched a family member grieve and move on after the accidental death of their 8 year old child, and learned as a parent how to handle difficult news about your children.

For me, the first parenting "blow" happen when I learned that Aiden had not only a peanut allergy, but also an allergy to all tree nuts. We had give Aiden peanut butter a few times after he turned 2 and each reaction got worse and worse, which the last one lead to hospitalzation. Now luckily his throat didn't completely close on him, but the itching of his mouth and throat were bad.  For Keith and I it was "hard to swallow" this news being big peanut/peanut butter lovers, but also we live in a world where EVERYTHING is manufactured on a tree or peanut plant. So we're on constant watch and can't really buy non label bake goods anymore.

The next parenting blow, came last October when learning at my 20 week ultrasound that Jonathan had a birth defect. I'm sure if you have been reading this blog, you know the emotions I had there and will spare all of the reiteration.

Today, I turned on the TV to watch the news and I found myself speechless, horrified, and just overwhelmed with emotions as a parent, but also as a human being, when I learned about the shooting at a CT elementary school. I know as humans we all want to pity ourselves and what we're going through from time to time, but today I was reminded that there are others suffering a little more then you. I was also reminded how bittersweet life is and how quickly it can be taken away. There were 20 sweet innocent lives lost and 6 adults who died trying to save them.

So as I head into this holiday season, I'll be constantly reminding myself to tell my children I love them a little more then I do, hug and kiss them  a little extra, but revile in each moment of joy, sadness, madness, and silliness because shockingly it could all be gone tomorrow.

Perspective....and the new reality

We had an ortho appointment for Jonathan last Weds. This was the first appointment he had since June. Over the last 5 months, I really haven't thought about surgery or what's to come, I really took to the whole "enjoy your baby" mantra that was reiterated to me over and over. The only reminder I have had of JP's FH is his leg, but this appointment has become the turning point.

We have officially started down the first road of our journey. Jonathan had an X-ray last week, which was something I agonized over for weeks prior to the appointment. While I wasn't worried about the X-ray....I was worried about  JP sitting still FOR the X-ray. This kid is non stop from the moment he is awake to the moment he goes to sleep.  He's crawling everywhere, exploring, pulling himself up, etc. So my thought was, he's never gonna be still enough for this X-ray. I was proven wrong, while he wasn't completely still, he didn't move all around either. He did very good and they were able to get the pictures of his legs they needed pretty quickly, I was impressed. LOL!

The above is his X-ray- it REALLY put things into perspective for me. While I always knew that Jonathan was missing a bone and the other was shorten, this is the first picture that we have of  it, outside of the ultrasounds. I look at this and think "Wow! I get it now." As you can see, he's missing that tiny little bone (the fibula) on his right leg and his bigger bone (the tibia), looks like it's half the size. The tibia is significantly shorten and bowed, which you can see in this picture pretty well. We're happy to report the top portion of his leg (the femur) are equal length and his hip and knee joints look good. The estimated difference right now is 5 cm (which is about 2 inches).

For the time being, Jonathan will be getting an AFO (ankle foot orthodic) to help him stabilize the leg when standing and make up for his difference. The AFO is call a Foot on Foot. Some kids do well and others hate it, so we'll see how he does, but it might be more comfortable when it comes to walking.

The current treatment plan is for an MRI in May/June so they can really get an idea of what he has vs what he's missing, especially with his ankle, and then surgery will be at 18 months (Aug/Sept). The first surgery will be to reconstruct his ankle (chances are he's missing part of the joint) and then straighten the tibia out.  After the surgery, he'll be in a fixator for several months, while his bones heal. Once Jonathan's finished this first step of the process, he'll still need a shoe lift to make up for his difference, until we have the first lengthening surgery (which would be around 6-8 years old).

As JP approaches his 1st birthday, I've now come face to face with our new reality.  I'm starting to see all the things I agonized over while pregnant become real and I'm doing my best to embrace it.

Crazy days filled of Halloween,Birthdays, and Giving Thanks!

This time of year always seems to catch me off guard and go by fast. Aiden is busy at school, JP is growing like crazy, and Keith and I are working a lot. Oh and of course, the whole family has been sick...again. So I've been behind on updating my blog- my apologies :)


First of all Halloween- It was good this year, but both boys were under the weather with colds. Aiden had a "school parade" which I was able to be a part of and he was so cute. They walked around the room and then performed a few songs.

The parade consisted of the intermediate class (Aiden's class- which is 3 days a week and consist of 3 and 4 yrs old) and the preK classes (which are 3 or 4 days per week and 4-5 yrs). You could tell the Pre K class had been practicing as they seem to know the words and were more up to speed then Aiden's class. My Mom, Keith's parents, and my sister were all there with us to "celebrate".

That night we went over to our friend's house in West Chester, the McDonalds. We've been having weekly dinner dates with them since early this year and so they invited us to go Trick or Treat around their neighborhood. We went to a bunch of houses, but between the boys colds and it being chilly, we didn't stay out for long. 

Aiden was Jake of the Neverland Pirates (a Disney Jr Show) and JP sported (Aiden's) Charlie Brown costume.

After Halloween, we started preparing ourselves for having a 4 yr old! So hard for me to believe, but our "baby" Aiden turned 4 on November 20th!

As always Aiden's birthday is a week or so celebration. He's lucky to have a birthday close to the holidays, I guess. It started with a birthday celebration at school on Friday the 16th, were he brought in brownies and got to be the line leader and it was a day about him.

Then on Sat the 17th, we went to celebrate our good friends Frank and Kevin's birthdays, and Aiden was also celebrated there too! They even got him a cake with a candle, which made his night! Then Sunday we went to see Santa (typically we do that on his birthday, but since we were at the mall we decided to say hi then).  On Tuesday, it was HIS day! We had planned to go to the Please Touch Museum, but the story of my life....both kids had colds (BTW- so over this school thing and colds...I'm sick of snot- LOL).

Aiden still had a great day! He loved opening all his presents and seemed to be so into all of them. He "cooked" with the play pizza and cookie set that we bought him and he also did some "fishing" with the new game we got him.

All in all, it was  a lot of fun and he was looking forward to celebrating with the rest of his family on Thanksgiving. He also got a birthday kiss from his baby brother.

Thanksgiving is always at our house- we invited Keith's and my parents, Keith's brother and wife, our niece and two nephews, and this year we had the added bonus of my cousin and the long time Paster and his wife of Keith's family, the Briggs (they married Keith's brother, baptized our niece and nephews, and married us!)

It was a great day and a time to give Thanks- especially for our precious bundle of joy that arrived 4 years ago. Aiden had a blast playing with Natalie and Marc, and my cousin Amanda joined in with the fun.

Keith (as always) made a Turkey and this year we did 2! Both were delicious and there was so much food! After the Turkey was done, we took to celebrating our boy! We did presents and cake for dessert. He loves open the presents and of course this year it's at a rapid pace.

It was a great night with family and filled with joy. We also took to torturing or capturing the newest/youngest Giosa members that we're thankful for this year- Jonathan and Matthew.

As you can imagine trying to take a picture of an ALMOST 9 month old and a 7 month old wasn't easy and to top it off it was bedtime...but they faired pretty well!

And to top it all off, today Jonathan turned 9 months...so hard to believe, it's just going by so quickly! We're so enjoying watching him grow and learn. He now crawls all over the place and is quick. He's also pulling himself up a lot and walks with objects (like boxes). He's also my troublemaker so don't buy his cute and innocent face- LOL

Well we hope everyone had a great Thanksgiving and is looking forward to the holiday season and spending time with their love ones! We wish everyone a Happy Holiday!!

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