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!