Walking in New Shoes

So as I sit and write this blog...it is hitting me hard, a month from tomorrow my baby boy will be 1! It's crazy. Aiden went fast, but I feel like I blinked and JP was 6 months old, then 9, and now almost a year. Maybe it's because I know I'm done having babies....maybe it's because he's # 2........ or maybe I'm just getting too old.

Anyway, he continues to grow,learn, and amaze us. He's starting to repeat sounds and says (or so we like to think) Aiden, Dada, Momma, Elmo, Apple and Banana. He's also my adventurous one- he's climbing stairs and  sitting on tables and is always so proud of himself. Mommy and Daddy not so much- LOL. He loves to climb the chair Santa brought and fling himself off the side....Santa should have realized how dangerous these chairs are.

JP got his first AFO (ankle-foot orthotic) last week. It's actually a different one then we thought (which I had posted a picture of a while back). It's a typical AFO with lift. So it's molded to his leg, but will also train his foot to go inward and help balance him and make him even. He's still adjusting. For the most part he's doing well, but now he's wearing shoes, something he has never done, so he's still not sure. We have Early Intervention coming in to do PT and get us all comfortable with it. We're currently breaking him in- he wears it a few hours on and a few hours off, eventually he'll move to wearing whenever he's awake. Hopefully he'll feel better with it soon and then start taking off, but this is the true start to his new journey....no longer a baby and now starting his FH treatment plan.

Now we're gearing up for his birthday party....so stay tuned!

Baby Steps and Snow Fun

So I know every parent gets excited when their baby takes their first steps, and I'm sure it's the same feeling whether it's baby #1 or #3.  For us JPs first steps are even more sweet. It was a little over a year ago where I had anxiety and worry if JP would every walk and hit "normal" milestones. Well this kids is ready to prove me all my negative thoughts and worries wrong. Santa brought Jonathan his own activity walker and right away he put it to good use. Here's a video of him "walking" with it, a very bitter sweet moment, but proud moment for me.

We also experience our first winter storm of the season...and I almost think Aiden was more excited to go play in the snow then he was Christmas morning- LOL. I went out and did some shoveling while he played and then built frosty.  Needless to say, he's ready for more...Mommy is not.

Christmas has come and gone...

So all the preperation and Christmas was over in a flash....especially with a 4 year old this year. We hope everyone had a wonderful holiday and got to spend time with family and friends.

We had a great Christmas which spread across 4 days this year. We started on the 23rd, where we got to spend some time with the grandparents, Uncle Marc, Aunt June, Natalie, Marc, and Matthew.

It was a nice low key night without us having to race anywhere. We had our typical Christmas Eve dinner (pizza, chicken fingers, & hoagies), hanging out............

And then what all the kiddies were waiting for opening presents. This year, since we had time, we let the kids open their gifts one by one, starting with the youngest (Matty) to the oldest (Natalie). Typically we are throwing presents at each other, so it was nice that we got to see what each kid got! And the older ones had a lot of fun with it and did well being patient. It was great family time and the adults got some great laughs as Keith's parents gave each boys a box of old photos of them when they were young.

 Christmas Eve...we got experience a "white" christmas...okay so it was just a coating, but it was still nice as it's been a few years. We went to church and then spent time with Keith's extended family his Mom's sister, brother in law & kids and grandkids- Dracups. It's always a good time and I love watching how much they all grew. And we got to celebrate the boy's First Christmas!

Aiden was super excited for Santa to come this year. He was loving putting out the cookies and milk, wondering if Santa would eat them. Then the next morning, he came in and asked, "do you think Santa came?"

Which clearly he did. Aiden opened his gifts in rapid fire. I had trouble taking pictures because he was going so fast. It's so funny when I think about how two years ago it took us all day to get through the gifts. He love almost everything he got, but his favorites include his green guitar, his clock, and his monster truck.

Jonathan didn't know what to make of all it. He would rip some wrapping paper, but he was more excited to play with it. So of course, big brother Aiden helped A LOT. LOL. Jonathan would open one gift and be done with everything and just play with whatever that was. 

After presents...the boys went on to their stockings...and Santa left a little surprise....personalized chairs.

After things settled down, we went to brunch at our friend's house the Lovings. We got to spend sometime with them, which was nice. After that we headed over to my Aunt and Uncles and got to see them, my cousins, and their kids.

The day after Christmas, we celebrated with my family as my Dad had to work Christmas day. It was nice, we had lunch, and exchange gifts and this is realize my kids are spoiled and loved because we have way to much junk! Ha ha.

Again we hope everyone had a terrific holiday and a happy and safe new year. Best wishes in 2013!

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!