Perfect Piggies...

     Aiden has this Sandra Broughton book called Perfect Piggies. There's one phrase in the book that I love now, "we're all perfect piggies indeed". This is one of Aiden's favorite books and these days we spend a lot of talk about "piggies" (even though the book really is referring to pigs). Recently, as Aiden was dressing himself and putting his socks on he counted his piggies and said, "I have 10!"; then, he  counted mine and said, "Mommy has 10!", then he counted Jonathan's and said, "He has 8!". Then, in true 3 year old fashion,  "How many piggies does Daddy have?" "Nonni have?" "Grammie have??" So, I go on to explain how most people (not everyone, which is what I used to say) have 10 and then try to explain why Jonathan has 8. Of course this is way over my dear 3 year old's head and so he moved on to something else.

Anyway, I feel that JP has perfect piggies. Recently on the FH (Fibular Hemimelia) support group I'm a part of I posed the question,  "Why did some parents choose amputation over the lengthening surgery if both were recommended by different doctors?"  Most of the responses containted reasons for choosing whatever route worked for their family (and everyone was supportive of each others choices - this is why I love this group!),  but as always there was one person who said that those who choose the life of lengethening surgeries were "torturing their children".  Well, this of course set off a fire-storm (I didn't know I could be so controversial - LOL), but I started thinking about it....

I can see why someone could think that a childhood of surgeries (especially where it can be anywhere from 5-15) would be a hard route, when amputation might seem easier.  But they still have many appointments, fittings for various prosthesis, and from what I understand, a few surgeries, too.  But to say that it's torture is just absurd (maybe not so from an outsider's prospective, but this is a women who's child has the same diagnosis as everyone else in the group). Everyone wants the best for their child and most people in this group feel that whatever works best for your family is the right decision. I feel the same. I don't turn my nose to those parents who choose amputation, nor think they took the easy way out. I would hope that someone who's in my situation wouldn't think I was torturing my child by trying to save their limb. I look at these piggies and think, they're Perfect Piggies... for our family.

When Jonathan is older, we'll explain to him why we chose the surgery/lengthening route and hope that he feels we made the right decision - despite the pain and surgeries he'll go through. But if decides that amputation is the way he wants to go on, I won't regret our decision or knock his choice because for now he has Perfect Piggies indeed.

Mother's Day Blessings and Giosa's Milestones

We had a very Special Mother's Day this year, Jonathan Paul was baptized. We had him baptized at First Presbyterian Church of West Chester, where my Aunt and Uncle are members and were we had Aiden baptized. JP's baptism was a bit special as he wanted to make it memorable. As I handed him over to the minister, he burped and puke all over the minister. The whole congregation laughed at this and the Minster wasn't to concerned, it was hilarious and a bit embarrassing.

After the service we had our parents and siblings back for lunch to celebrate the blessing of JP as well as celebrate the various mothers in our family. It's the first time JP & Aiden got to meet his baby cousin Matthew too. We hope all the Mom's out there enjoyed their time.

It's also a week full of milestones in the Giosa household. This little cutie turned 3 1/2 on May 20th.

He's continues to amaze us on how smart and how much he loves to learn. He talks all the time and his vocabulary seems to grow all the time. His new word is "options". He's the best big brother, more then we could have hoped for. He loves to feed, play, and love the baby.

I believe he's also going to be a musician like his Daddy as he loves to rock!

Also, on May 22nd, Keith and I have been married for 8 years. It's amazing how fast it has gone by, but it's great how we really still enjoy each other and have so much fun together .We had a rough 6 months, but it was each other that got us through all the ups and downs with JP and there's no one else I'd rather share it with.

Lastly, this little cutie pie turns 3 months (already!!) on May 23rd.

He is so alert now, we have him doing tummy time, which is a struggle, but he's great with holding his head up.

And all he wants to do is sit up. I think he just wants to sit up and run with his brother. He hates to lay down now, he wants to see and know what is going on. We get lots of coos and "ahs"

So it has been a pretty exciting and busy month in our house and it's only going to get crazier in the next couple months!

The other (not so) little Man in our life

I feel like recently the blog has been very JP focused between being a new baby and keeping everyone updated on his condition. But we can't forget the other special man in our life- Aiden.

Aiden is doing so well being a big brother. I'm so proud of him. He loves his brother so much that we had to nickname it smotherly love. LOL!  He's the only one who can really get Jonathan's attention and Jonathan seems so enamored by him. He takes a lot of pictures of his brother...I think that is from 3 years of having the camera in his face

Aiden is talker. He's been talking from an early age- saying "Dada" at 5 months. I remember the pediatrician sitting us down at his 9month and year appointment and said that he's ahead of the game on this whole talking thing and to never compare other children to him. Today he just goes from the time  he gets up to the time he goes to be.

Aiden is also into learning. He seems to want to absorb everything he can. He knows his ABCs, can count to 20, shapes & colors, and now days of the week. We never sat down with him to teach it, he would inquire and inquire and inquire until he got it. He soaks up everything like a sponge. It's hard for me to believe but he'll be heading to pre-school in the fall.

Aiden is also a clown. He loves to get people's attention and try to make him laugh. And he does make us laugh!

I find being a Mom of 2 is sometimes hard especially with working. Aiden has always loved attention and typically got it being an only child, now he's trying to learn how to share the spot light, which is hard. Add on to the terrible 3s and that just complicates it, but all in all he's a smart, energenic, loveable and fun boy.  We love you Aiden Edward!

Happy 2 month birthday JP!

It's hard to believe, but, this little naked cutie just turned 2 months old on Monday, April 23rd!  He's weighing in at 11lbs 4 oz and is 22 1/2 inches long. He had his appointment Tuesday and poor thing got two shots...which caused him some fussiness that day.
 

What an amazing journey it has been so far. Before he was born we were faced with so much uncertainy and then my beautiful boy arrived and it was one piece of good news after another regarding his initial prognosis. We got to spend so much time together enjoying every happy, tired, and sometimes frustrating moments of being parents to a newborn. No casts....No brace....No weekly trips to DuPont (no offense Dr. Nichols...we do look forward to having you as JP's doctor nonetheless)


Just time hanging out....learning to "talk" and starting to smile.

Taking trips to the park, the shore, the mall, Taco Monday at Victory, visiting grandparents etc.

And spending some tummy time with his older brother who loves him so much!

We continue to feel so blessed to have two wonderful boys. It's been a great journey so far being parents to two boys and I know there's so much more to come. JP has a rough road ahead, but for now enjoy his first smiles and coos.

Welcome to the Family...

Keith and I got to visit our new nephew yesterday and he's so sweet and adorable. Simply put, he's the 2nd cutest baby in the world..watch out JP he's neck and neck with you- LOL! He is such a good baby, sleeping most the time we were there and when he did cry it was this sad sounding (almost pathetic) cry, unlike JP who screeches.  The baby has these little chubby cheeks, but his body is long and lanky. We're so excited for him to be here and for June, Marc, Natalie, and Marc!

Welcome to the family Matthew Xavier!

And baby makes 5.....

Today Keith and I became an Aunt and Uncle again. Marc and June (Keith's brother and sister in law) welcomed their 3rd child, a beautiful baby boy, which makes them a family of 5 and gives Keith's parents 5 grandkids. 

The baby was born at 9:29am, weighing in at 8 lbs and 5 oz and 21 1/2 inches long. He has no names of yet...but he's adorable and here's a picture of him!

JP and Baby G are exactly 8 weeks apart and hope will become buddies and great friends. Mommy, June and Baby are doing well. We are so excited for Marc, June, Big Sister Natalie and Big Brother Marc- Happy Birthday sweet nephew and welcome to this crazy family! 

Back to reality...but first a mini vacation

8 weeks goes by fast when your in the thick of raising a 3 yr old and taking care of a newborn. I'm heading back to reality and off to work. We got to take a mini vacation last weekend, which was perfect timing with the weather warming up! Keith had a gig Friday night in Dewey Beach, DE (about 10 mins from Rehoboth Beach) and so we decided to make a weekend out of it. It was like our last Hoorah of our time together.

We couldn't have asked or a more perfect weekend in April. The weather was amazing- sunny and warm temps. Both kids slept great in the hotel, at least one meal a day at Dogfish Head Brewery (Keith and I love their food and the beer isn't bad either- LOL) and some amazing family time.

The hotel we stayed in was so nice and was modeled after the Victorian time period (I think my mother in law would absolutely love it there and might not want to leave). It was right on the boardwalk and they had an indoor pool. We took Aiden swimming and he was absolutely amazing. Fearless this year, which could be good and bad. He has a vest he wears that is like floaties. This year he learned to keep himself afloat without capsizing- LOL. He was swimming around without holding on to us, jumping in, going under without any fears...or tears. I love it and I'm a bit nervous- LOL.

All in all it was a perfect weekend and a perfect way to end my maternity leave as sadly I go back tomorrow. I love my job, but I love my kids too and will miss being home with them each day terribly (even it was trying at times).

                                                                  Our Family of 4

                                         
                                        Daydreaming about building sand castles on the beach

                 
                                                            This kid loves the beach and ocean!

                                                           
                                                     Me and my baby boy hanging out

                                                 
                                                  My boys- they bring me such joy

                                            Fun with Daddy- Keith loves to put pants on the boys' heads!

Hoppy Easter

We hope everyone had a wonderful Easter filled with many blessings and time with loved ones. We had a pretty good Easter. We're all trying to get over a cold, and by all, I mean the whole family including JP. The cold is just one that lingers.

For Easter we did an Easter Egg hunt again with Aiden and this year he was totally into it. We fill the eggs with coins and a few with dollars. He loved finding them this year and in fact decided to re hide them when he was done- LOL. He also got a lot of good loot from the bunny. Candy is hard to find for him due to his nut allergy, but the Easter Bunny struck big with chocolate covered Trader O's (think cheerios) and chocolate crisp. He also got some goodies like a Mickey Video and Book, a car (Ramon) from the movie, and a flash light (he is obsessed with them). Poor JP, got pacifiers, a few books, and some used toys (Aiden's baby toys). Don't feel sorry for him, he slept through the festivities in the morning anyway- LOL.

We spent the morning with Keith's family, celebrating at church and then followed up with a lunch out. It was so nice to hang with our niece, Natalie, and nephew, Marc Jr.,  who are getting so big. I just love watching them grow and listening to their stories. Aiden absolutely adores both of them and was so excited and happy to hang out with them. We're also anticipating the arrival of our newest nephew who comes April 19th, I can't wait! We also enjoyed time with Mom, Dad, Marc & June.

Easter night, we headed over to my Aunt's for dinner and hung out with my parents, Stacey and her boyfriend, my Aunt & Uncle, and cousin Amanda and Henry. It was quite this year as Sam, Rob and the boys spent time with Rob's family. I imagine Christmas time will be crazy with 5 boys. Here's some pics from the day, enjoy :)

Putting Things in Perspective....

It's hard to believe this beautiful boy will be turning a month this Friday. It has gone so fast, even though there are days (and nights) that feel like forever.

Over the past month, I have been able to enjoy spending time with my two boys and my awesome hubby. I've gotten to really enjoy being a Mommy, the beautiful weather we've been having, and amazing meals that Keith has been cooking with help from our CSA. I have also dealt with the struggles of raising two kids (including terrible 3's and a gassy newborn), as well as enjoy precious moments like below and relish in the fact that I have two amazing, sweet, and healthy boys.

Over the last 4 weeks, I have had time to adjust to Jonathan's birth defect. I think back to my initial ultrasound in October and how devastating the words were to hear and digest. At that time I cried as well as wondered about so many things; How would I handle (as well as explain to others, including my Aiden) a child who only has 3 toes and a shorter leg? Would he be in pain from his one bowed leg? Could I handle a kid who needs two different shoe sizes and one with a shoe lift? Could I handle a child who might need to have an amputation below the knee? Or could I handle seeing my child going thru repeated surgeries and pain from a tender age of 1 or 2 up until teens? Could there be other things wrong with him? And just the overwhelming feeling of dealing with the paperwork of 2nd insurance, early intervention, etc.

Now, here I am almost 6 months later and realize that my questions, fears, and worries were selfish and foolish. I see this beautiful face -

- and think, "so what, he has 3 toes...they are 3 perfect toes." And Aiden... he loves to count and rub his toes and doesn't notice that it's different, even though we had taught him that people have 10 toes.

His bowed/short bone - doesn't hurt him and I feel gives him character. And sure shoe shopping might be a bit of a nightmare, but shoe lifts are much more natural looking now.

And if he needed to have an amputation (which he doesn't) - so what? We would have learned to handle a child who has a prosthetic and he probably would run and jump just like any other boy.

Lastly, I thank God that there is absolutely nothing else wrong with him besides the fibular hemimelia.

Yes, I know we have a long road ahead, full of surgeries, pain, huge braces that have pins that will need turning, and physical therapy to deal with. Yes, my heart will break every time we have to go through it and I seem him wince or cry. But I have a beautiful boy that I would not trade for anything in the world!!!

You're Not Alone....

That was the theme tonight on the Fibular Hemaimelia Facebook suppport group tonight. And that's so true! We joined this group shortly after my 20 week ultrasound diagnosed Jonathan with this birth defect. This group has provided an overwhelming amount of support and information for us. Everyone in the group is so nice and friendly, it's amazing!

Although no one's FH story is quite the same, everyone's information is so helpful and encouraging. Tonight another "new" Mom to an FH baby posted her concerns and questions, pouring her emotions out and she received so many responses so quickly from so many people. Everyone was providing uplifting and helpful information. What most of those people posting might not realize is that the information isn't just helpful to the Mom that posted, but to Moms that are reading their feedback as well (like me :) )

I'm so proud to be a part of this group and have support from others who can only understand how hard and devastating the FH diagnosis can be, yet realize as sad as it is to see our babies go through this pain, it could be worse.

The group is https://www.facebook.com/groups/fhlla/ for those on Facebook.

Best News We've heard all day....

Yesterday, Jonathan has his first Ortho appointment at DuPont. He was getting a full evaluation of his fibular hemimelia (on his right leg) and we were expecting his "clubbed foot" (which was on his left leg) to be getting casted. Just as an FYI- The clubbed foot procedure is casting each week for up to 3 or 5 weeks and the last cast would be on for 3 weeks. After the cast came off, then Jonathan would have a brace with a bar on for 3 months and then it would only have to be worn and bed and nap up to age 2 to "train" the foot" to be set properly.

Anyways, we got down to DuPont and met Dr. Nicholas and her wonderful team. We were immediately reminded of why we choose this doctor. She's compassionate, understands we're a need to know information type of parents, and just so good with our little boy. She took one look at Jonathan's left foot and told us he doesn't meet the "club". That club is having a clubbed foot. Keith and I were immediately shocked and I was ready to cry. She said his foot looked good and the slight turn in that he has will fix itself as he grows. So we have spent months of trying to mentally prepare for our little boy to have casts on his leg, followed up with a brace, in his initial first stage of life. And then a few simple words brought us joy and we now just get to enjoy our sweet baby boy!

As for his FH diagnosis, the prognosis for that looks good too. The Doctor look at his right leg and said, "I like the length of this leg". For those who don't know what FH is, basically the tibia bone is underdeveloped, and Jonathan is a missing his fibula and his tibia is also bent. He also lacks (at least a portion) his ankle. The fact that the doctor liked the length of his leg is BIG and hoping that means there isn't to much of a discrepancy between the two. They'll have to break his tibia and reset it, which will also give him some length as well. She seemed happy with his overall leg and foot development, which was a relief to hear. She also said the rest of his skeletal frame looked great, although his one hip has a "click" to it, but that is probably nothing.

Our poor little boy did have to go for x-rays yesterday to check out both his legs/bone structure and all, but he did fantastic! Jonathan was wide awake, but never cried. We go back in 3 weeks for an ultrasound to check out his hip and then meet with the doctor for his treatment plan. Most likely, his treatment probably wouldn't begin until after he's 1. I guess we'll learn more about the course of action at the next appointment.

What we to know is that Jonathan will have to undergo a MRI at some point in the next year or so and his first surgery (fixing his ankle and breaking of the tibia) would be at 18mos to 2 yrs. Jonathan will probably have 2 more surgeries throughout his childhood for limb lengthening.

We are excited about the outlook and the answer to prayers we have already received. We are super excited to be working with our DuPont team. Although I know this poor baby will endure pain and a rough road ahead, we are thankful for all the good news we have received and that what once was a devastating diagnosis has turned to have a lot of positive outcomes. Of course, we will continue to keep you updated on our little Peanut, but for now we can just track baby milestones!

Introducing Jonathan Paul Giosa

Our little miracle boy, Jonathan Paul, arrived on Thursday, February 23, 2012 at 1:53pm. He made his arrival very quickly which made Mommy happy. He weighed in at 6lbs, 11 oz and was 20 inches long. He's our little peanut. We can't believe how tiny he is! His big brother, Aiden, was so excited to meet him and has been doing great with him so far.

Jonathan has gotten a clean bill of health and all looks well. He didn't need to spend any time in the NICU and we were able to keep him in the room with us. For those who didn't know, he does have a limb deformity called Fibular Hemimilia. Jonathan's right leg is shorter and missing a bone and he only has 3 toes on his right foot. He also has clubbed left foot. We weren't sure how his birth and delivery would play out, but in the end it was perfect. His leg doesn't look as bad as we thought and we start our ortho visits on Weds. We're excited to be going with some of the best ortho doctors to handle this, but saddened by the long road ahead our sweet baby boy will have to endure.

As for his delivery, it was such a different story than Aiden (thankfully). I went in Thursday morning to get induced (about 4 days before my due date to try to avoid a complicated deliver this time) and again it went quickly. The contractions didn't seem as bad this time around. I pushed for 20 mins (although I don't remember feeling as exhausted last time as I did this time), and had no tearing at all. I was so thankful as I did get a bit nervous history could repeat itself. Once he was born, they did take him to the baby isolate to evaluate him right away. So, I didn't get to hold him for about 15 mins or so after he was born, but luckily they allowed Keith to be there. He did beautiful with 8 and 9 scores on his Apgar test and passing all the rest! After that he was all ours to enjoy.

We feel so blessed to have two beautiful and health boys and wonderful friends and family for all their love, support, and well wishes.