A day of Prospective, A day of Struggle

This past weekend we attended an Early Intervention Family Day event. Due to his condition, JP automatically qualifies for Early Intervention services. We have recently used them to help him adjust to his AFO and start walking. Both the boys loved the event (especially Aiden). We went to a bounce place where they both "jumped" in inflabale playsets. Their favorite was the inflatable slide. As I looked around and started to engage with other families, I realized many people were there with kids that were mentally delayed, had cerebral palsy, etc. and realize I'm fortunate to have a child with FH. Although he's facing surgery so he can "function" through life normally, these other parents struggle on daily activities.

But, I am struggling myself. We went down to Sinai's Rubin Institute for Advanced Orthopedics (RAIO) to get a 2nd opinion on JP. We love his doctor at DuPont and dealt with some serious guilt about this (think cheating on a boyfriend/girlfriend). She was trained at the RIAO, but we just felt we owed it to JP to go down there and see what they had to say. While down there JP had x-rays, we met with Dr. Standard, and got a tour of the facility. It was very nice and Dr. Standard gave a similar diagnosis as Dr. Nichols (JP's current ortho. Doc saw), which gave us such comfort. 

A normal parent would be okay with that, but for this Momma i have gone into a downward spiral. I almost wish they saw differences. At times I feel like I'm right back to where I was when we found out at my 20 week ultrasound. I struggle with what is the right choice for our family. Of course everyone wants the best for their child, but for me, there are children involved. We love JP's current doc and have such confidence in her, but RAIO is supposed to be the best; which I want for JP. But, then I think if we go to RAIO, that's a week away from Aiden and him living with other family members. Plus, there's the initial cost outside of what the two insurances JP receives covers. So I sit at a crossroad in what to do.

I'm also following a little girl Gracie right now. She just had her first surgery at 16 months. She underwent the same treatment JP will receive sometime this summer. I look at the pictures and my heart breaks to know my sweet boy will have to go through the same. Yet,  Gracie is doing well. A day post-surgery and she isn't letting her situation stop her; she's weary, but determined. I continue to keep her and her family in my prayers; especially because they're currently away from their oldest baby - Gracie's big brother; a very similar situation for us.

I  know my baby is okay and I'm reminded by family all the time of what he has accomplished thus far, but the day-to-day reminder has been getting me down currently. So, I continue to try to remind myself of how I felt at the Early Intervention event - that I'm fortunate - and surgery/therapy is the only struggle JP faces.

No more babies....

Well, it's official. The Giosa household no longer has any babies! Our little adventurous, curious, and crazy, but sweet little boy turned 1 last week. I can't believe how quickly the last year has flown; more so then when we just had Aiden. And yet, the marking of his first year coming to an end is bitter sweet because we're one step closer to his surgeries and his journey into limb lengthening.

We decided to have a small party for Jonathan with our family and close friends. We celebrated with them on JPs actual birthday. We went to a local restaurant and rented a room to celebrate with pizza and cake; both boys favorites.

It was a nice afternoon and we made the party to be more like a fundraiser.  Since we have so many toys and clothes from Aiden, we asked that those who wish to give gifts either donate to Jonathan's medical fund or our Save a Limb 2013 team. We were overwhelmed by the donations and feel so blessed to have such amazing people in our lives supporting us and our little guys!







Jonathan enjoyed the party mainly because of the food, - LOL! - but he did like seeing everyone and entertaining them as well. I'm not sure if his favorite part of the day was the balloons or the cake. He had his own little "smash" cake. When we put it in front of him, he gave us a look like, "Really? You're actually going to leave this in front of me? That never happens." I must say ,I was surprised just how delicate he was "digging" in initially. He was very calm and careful, which is not Jonathan at all, but of course the more everyone egged him on, he got in to it.

After the party, we had the grandparents and Keith's Aunt Carole & Uncle Tony (who won the prize for travel the furtherest coming from FL) over to watch JP open the gifts he got. Of course, Jonathan didn't have much interest in opening the presents and at this point was wiped out so Aiden took to it like it was his birthday. All in all it was a great day celebrating our happy little boy and we thank everyone who came to the party or sent their well wishes to him!

Jonathan is doing well developmentally, too. He's now drinking milk out of sippy cups (Yay! No more bottles!!), talking more and more each day (clearest words our Daddy, Elmo, [ba]nanna, and spoon), eating a big variety of food on his own, and cruising. He has started his Early Intervention therapy which is something that he is eligible for due to his birth defect. He has a very small delay with his physical ability, but for the most part is on par with most 1 year olds. A Physical Therapist comes every other week and works on building his core muscles, his leg muscles, and helps him adjust to his AFO (ankle-foot orthodic). She said that Jonathan is doing well and he enjoys his play time with her and Daddy. They utilize toys in his environment to help him. Here is a pic where he's sitting on his riding toy where they practice getting on and off and the other is sitting on a bouncy ball to help him push himself up to try to stand alone. We're starting to notice he's not putting his weight on tables or objects he's leaning against, which is good, and every now and then he lets go and stands on his own for a second. He recently started walking holding our hands, which is something he hasn't done since getting his AFO. So, little by little, he's getting ready to walk (and then we're really in trouble! Maybe I should stop encouraging this)!
We started a facebook page recently, too, to document Jonathan's journey. It also help others who are just discovering their child's FH diagnosis. We're hoping it will encourage others who are just starting out. We're already up to 60 likes!

If you have Facebook, go to https://www.facebook.com/MilesForJP and like it! https://www.facebook.com/MilesForJp  







And lastly: big brother Aiden is growing like crazy, as well. He's definitely coming out of his shell and becoming more independent and curious. We sometimes butt heads as he thinks he knows what's best, but I'm sure that's just parenting in general. He's doing very well in school, too! We got his "report card" and had his conference and the teachers told us he's a very smart boy who is the only one in class that knows his shapes, numbers to 20, ABCs, colors, and days of the week.

Aiden is definitely our learner, he's now into telling time and learning the months of the year. He also can sight read about 50-60 words, so some nights he reads me the bedtime story. We're currently working on cutting and writing letters. Today he wrote his 3 cousins' names and his Aunt June on his own. He just needing help writing a few letters.

Its hard to believe that he's wrapping up his first year of pre-school! Next year, he's going 3 days a week to Pre-K classes and I just signed him up for soccer this spring!

Aiden is very much like Keith; he looks like him, shares his personality, and shares his passion for music and cooking. He loves to go and play Keith's instruments (or his own green guitar) and knows the words to so many songs - if not makes them up! He definitely has a creative mind. We're enjoying watching him grow into an amazing boy!