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.

Closing the gap... 37 weeks down, 3 to go

Well I'm heading down the home stretch....at 37 weeks and 2 days as of today. I started my weekly visits last week and things are still progressing well. I'm still gaining weight, which at this point, I wish I would stop, even though I am doing so much better then I was when pregnant with Aiden. And I have no signs of labor as of yet- so not dilating and not effaced and JP has not dropped. No surprise to me. The doctors say since it's my second that can change quickly, but I'm not going to hold my breath.

I had an ultrasound around 34 weeks and JP is a little peanut. He's measuring small and was estimated to be in 25-30% for weight for his fetal age at 4lbs 12 oz then. No reason for concerns, but it might change my induction date as they would like to him to gain a little more weight for the time being. So I'll probably go sometime towards the end of the week of the 20th or on my due date the 27th. It's a week by week thing now.

Also, there was some amazing and break thru news in limb lengthening care. These fabulous doctors (Dr. Standard and Dr. Herzenberg) from Sinai Hospital created and got FDA approval on an internal fixator, which could be great news for Jonathan's future.

Right now when limb lengthening surgeries occur, patients are in a external fixator (pic below) for long stretches of time and there are pins that go into the leg's bone, which need to be turned. From what I hear, it can be painful and there are possibility of infection. This new internal fixator would make life "easier" for all these children/adults with Fibular Hemimelia.

Here's the article of it Sinai Hospital Surgeons Codevelop First Remote-Control Leg Lengthening Implant Cleared by the FDA |.

A Spring Day in Janurary

We have had a very mild winter (and I'm definitely not complaining) this year after the last 2 years of blizzards. Although we haven't been the best of getting out and enjoying it, so today Keith and Aiden decided to break their cabin fever and go to the park. Aiden loved the freedom and the chance to get some of his energy out. Here are some pics

Please Touch Museum Play Date

On Saturday, we met our good friends the Perillos at the Please Touch Museum for a playdate. Our boys are about 4 months part and although we can't get together a lot, the boys love seeing each other and play so well together.

They really enjoyed going from each activity, but their favorite part was running around like two crazy boys in the lobby after finishing their snack. Little did we know we could have just spent 3 hours doing that- LOL!

Here are some pics to enjoy...

Check Ups, Mastering a New Task, and Family Birthdays

This is a month of check ups....I have 2 OB appointments on Jan 16 and 30 and hard to believe this little cutie had his 3 yr check up.....

On Jan 5th, Aiden went for his check up and another good year when no shots were needed- yeah! It's amazing how easy check ups get when they get a little older...he was so good and such a big boy. He got on the big scale, which he was all excited to do and weighted in at a healthy 33 lbs (60% for his age) and then stood big and tall to get his height measured and was 37 1/2 inches (50% for his age). He got all around a clean bill of health and the doctor was impressed how conversational he was...we said it's all day long- LOL. He also got excited when she asked him to jump, since usually it's Aiden stop jumping. Lastly, she said he's doing great for his age with potty training and that soon it'll be time to conquer the night, but know most boys have accidents up till age 7. He's good to go until next yr.

Aiden also learned how to use chopsticks this week. Our pretty good eater, always wants to try like Mommy and Daddy. Keith took two chops sticks and rubber band them together for him to use and he did it with such easy.c

As you can see he got a piece of chicken (as well as broccoli) and it didn't fall

He was so proud of himself!

We also celebrated my beautiful niece's birthday. Hard to believe she turned 10 on Jan 5th, I can still remember the day she was born and being one of the first to hold her (really because my in laws all had colds- LOL)

Natalie the day she was born....... And now all grown up

And now she's a decade old. We celebrated her Birthday that weekend. It's so fun and interesting to see how much she is maturing and growing up. Aiden just adores and follow her all around and she is so good with him. She's my little babysitter when we're out.

I had my 34 week check on Jan 16th. Getting nervous it's so close now, so much to do and I'm not ready.... at all. I'm starting to have a lot of anxiety when I think of the logistics- pulling all the baby clothes, car seat, swing etc. out of the attic and start washing and preparing. Lots to do and time is ticking away- LOL.

The check up was good. Weight gain continues to be slow (and sooo much better then it was with Aiden). I'm at the 24lb mark this week. His heartbeat was 140 beats per min and blood pressure low as always. I will be going for another ultrasound on Thursday. One they want to check his position as they had believed he was transverse a few weeks ago, so they want to confirm his position, which would result in me getting an ultrasound or induced. I'm also measuring small (which I did with Aiden) so they want to check everything is progressing well.

And lastly today, is my baby sister's birthday, Stacey. I remember wanting another brother so bad...and got a sister, but today I wouldn't change it. She's 27, hard to believe because I still remember the day she was born!

Merry Christmas and Happy New Year!

Poppi and his crew


Nonni and the grandkids

Cousins! (the boys are double trouble!)

Santa came!

Opening Presents!

Very excited about his train table!

Stocking time!

First off, we wish everyone reading our blog a very Happy Holiday!- and hope everyone's Christmas was joyous and filled with family and loved ones!

We had a great Christmas...as always a very hectic one with lots of running around, but it was a lot of fun! Aiden is at a great age to really enjoy the holiday through his eyes. We spent Christmas Eve with the Giosa's. Since it was a Saturday, we were able to get together early and spend the day together before heading to church. It was nice not to be rushed and enjoy each other. Christmas at Nonni and Poppi's are getting a bit crazy with an almsot 10 yr old, a 6 yr old and a 3 yr old running around and getting excited about presents and Santas. I remember how quite it was when it was just Natalie. And to think next year we'll have a 10 month old and a 7 month old too. As the great Italian Family that we Giosas are, we had pizza and hoagies for Christmas Eve lunch/dinner....not the 7 fishes. LOL! After time together, presents opening, and eating, we went to church to celebrate Jesus' birthday. After church we went to Keith's Aunt Sandie's house were we got to spend some nice time with his cousins and their families who we don't see often. Aiden was caught up in all the fun and of course present opening.

After getting home Christmas Eve, we left Milk and Cookies out for Santa (first time we did it since Aiden was born), which Aiden was so excited to do. On Christmas morning, he woke up like it was any other morning, not grasping what might have happened overnight. So after us probing him a little to look down the steps to see if Santa came, he got very excited to see, not the presents, but that Santa ate all the Cookies and Milk. We then moved over to presents, last year it took him 4 and half hours to just make it through the presents under the tree (which trust me weren't a ton), but this year was like rapid fire. I think it was 20 mins and it was the craziest thing I ever seen a kid do, he opened presents that had the same wrapping paper before moving on to the next set of gifts. Santa was very good this year (apparently he forgot we have been battling with terrible 2s into 3s- LOL)! Aiden got a Buzz Light Year and Jesse the Cowgirl Doll from Toy Story to go with the Woody Doll Mommy & Daddy bought for his birthday. He also got a Cars race track, as well as a few trains from Thomas the Tank Engine, some games, and practical gifts like sheets for his very big boy bed that he'll be getting soon.

Our Christmas afternoon/night was spent with the Donnellys & Grattons. My parents stopped by for a bit to exchange gifts with Keith and I and to give Aiden his big gift, a tool work bench and then we headed over to my aunts to share with them, my cousins and their families, and my sister. Aiden enjoyed playing with his cousins....espeically Will (Sammie's middle son who's about 16 months old). Of course when present time came, with 3 Toddler boys it was mass hysteria. Rob, Aiden and Will, were just tearing into gifts whether they were theres or not. I can't imagine next year when Luke will be old enough to join in on the fun and then our little Jonathan will be here as well. My aunt's house will be a complete and crazy mess. Aiden was luck that our families were nice and generous to give little Jonathan presents even though he isn't here yet...so Aiden got to open them too.

All in all, it was a great Christmas and Aiden enjoyed it very much, and we're now having fun watching him love his new toys. His favorites are the train table (from Nonnie and Poppi that Santa put together for them), his cash register, his buzz light year, his geotrack Train, and his tool bench.

On a side note, Jonathan is doing well too. I had an appointment two weeks ago and his heartrate was 155. My blood pressure and weight were good and he's a very active (sometimes violent- LOL) little boy. Of course the doctors love to remind me I want a fighter...I have a feeling he will be. I go back for my 32 week check up this week and it looks like I'll get one more ultrasound before he arrives between 34-36 weeks to see if he's breech or not. Whatever the outcome will all depend on if I'm induced or will need a C-section. So we'll keep you posted.

We want to wish everyone a very Happy, Safe, and Wonderful New Year and may 2012 bring many blessings to you and your family. We're lucky to get 2 little babies in ours!

Getting ready for Christmas...

Aiden and I have taken on to a new tradition, building a gingerbread house. Although I will never make it as a pastry chef, we had a lot of fun. I constructed the house and let Aiden decorate it and he was so proud!

We also got to meet Santa a few times so far. Aiden seems to love him this year, but still not grasping the whole concept. Our first meeting was at the Exton Mall, where Aiden was happy to say hi, but got very shy when sitting on his lap. The second meeting was at a health fair event we attended. That time he wasn't shy and he told Santa what he wanted.