PT? OT? DT? Holy Moly...

At Addy's 9 month check up, we saw a different pediatrician because our usual doctor had a family emergency and wasn't available. We had only seen our "usual" pediatrician one time, so seeing a different practitioner within the practice wasn't that big of a deal. She was friendly, interested in Addy's limb difference, and turned out to be a wealth of knowledge.

Unlike the pediatrician that saw Addy when she was born, this doctor had actually seen several cases of symbrachydactyly, and even went to medical school with a woman that was missing her left hand and had just recently opened her own dermatology clinic. She went on to let me know that through the state of Illinois, there was a program called Child and Family Connections. This program offers free evaluations to any child from birth to age 3, that presents with any physical or mental delays. Depending on what the evaluations find, the program offers a range of therapies ranging form physical therapy, developmental, sensory, and occupational. The pediatrician gave us the paperwork, gave me the name of a book to read about picky eating toddlers, came back and poked Addy a few times, and we went on our merry way.

I went home with the paperwork burning a proverbial hole in my pocket. Once the kids were in bed, I got online and researched the program. It all checked out, and after speaking with my husband, we agreed that a free evaluation would be a good way for us to gauge where Addy is compared to other kids her age who aren't missing a hand. I called and scheduled the appointment, and a friendly case worker was assigned to us to help us navigate the journey as well as facilitate the evaluation process. After meeting with her to fill out the appropriate paperwork and take Addy's history (yes, I had to relive her arrival in vivid details AGAIN...), she suggested that a physical therapist, occupational therapist, and a developmental therapist all evaluate Addy to see if she would benefit from any therapy.

At 9:00, all three therapists arrived eager to get started. They wanted to review Addy's history, elaborate on a few things, and then they started their evaluation. They tested Addy in several ways, and I was assured that they were taking into account her missing forearm and hand in the scoring of the tests. They explained to me that the tests don't take into consideration the loss of a limb, so if they had scored her as failing the tests simply because her missing hand wasn't doing anything, she would have scored as having a 100% delay, which is obviously not the case. The physical therapist especially scored her evaluation different. She noted that while Addy's hand is missing, she still brings both arms to midline when holding things, she still uses her little arm to hold things on it's own, and uses it to crawl. She is not disabled, she is differently abled. 

After two hours of evaluations and people poking at her, Addy was fading quickly. I grabbed her blanket and laid her down for her morning nap, took a breath, and headed back into the living room to hear what the therapists recommended. They each explained how they scored her, what they found to be her problem areas, and what they suggested. Developmentally, Addy is right where she should be which was a relief to me. The physical therapist and occupational therapist both agreed that Addy would benefit greatly from weekly therapy. The physical therapist told us that Addy has low muscle tone, which is contributing to her stability issues. She also said that it could be part of the reason she took so long to crawl, and still wasn't pulling herself up to stand on her own (and I had been blaming it all on her missing hand). She said that once Addy built up some strength and muscle tone, that we could back the therapy down to two times a month instead of weekly. I told her I wanted to be as proactive as we could be, because I know that her missing forearm and hand will cause other body parts to compensate, which in turn could cause other issues like scoliosis or pain in her left shoulder. We agreed that preventative physical therapy would be important to continue. The occupational therapist had similar views, but had a great way of putting everything into perspective (I'm pretty sure I wasn't able to hide how I was feeling and that the worry and heartache was written all over my face). She told me that Addy was showing some delay on her left side, probably due to the low muscle tone, but that she was right on the bubble. Then she said this: "Addy doesn't have a right hand, so we need to make sure that her left hand is the best it can be because it's the only one she's got!"

No one wants to hear that their child is delayed in any aspect of development. I knew that when we started this process, and even before we started, that therapy would probably be recommended. After speaking with so many other families who's children have limb differences, I know that each family has their own journey, all very different even though our children are all so similar. We want to ensure that Addy has the best life she can possibly have, that she is strong, confident, able, and above all else, loved. We know that putting her through therapy will be hard on her physically, and I'm sure at some point even psychologically and emotionally, but it's what is best for her and her future. We want to give Addy all the tools she needs to be successful, and the best she can be. This isn't to say that it still didn't hurt my heart hearing that she needed therapy, because it did. I broke down after the therapists left, and buried my face in my husband's chest and cried, but I only cried for a few minutes. Then I pushed my feelings aside and looked at our beautiful little girl crawling around chasing the dogs. She's happy, she's healthy, she's able. We will do anything and everything in our power to make sure she stays that way for the rest of her life!

The Cuteness Runs Over

The cuteness in this picture.

I can't take it. 

She get's cuter and crazier every single day. 

She may look just like her big brother and daddy...

But she's got her mama's sassy attitude.

Oh lord. 

A Whole New World

It's been an interesting few days around our house. Between Nolan being gone for his annual two week Army training, the frequent meetings with our realtor searching for a new house while wrangling the kids, and Addy's newfound mobility...things have been uber crazy. Yes, I said uber. We have been busy with park play dates, meeting up with new Lucky Fin friends, planning all of our summer trips, all while allowing Addy to explore her surroundings and making sure she doesn't eat copious amounts of crumbs and dog hair off the carpet.

Not only has Addy's new ability to scoot and crawl made it interesting for our dogs, (their daily naps have shrunk considerably...) but Keegan seems to have realized that Addy is in fact a human, and fun to play with. She even enjoys playing with his dinosaurs, a bonus for all parties involved. While her new found moving and shaking is fun for her, it adds new levels of stress and worry to my daily plate. My days of jumping in the shower while she plays in the floor are over. All showers will now be taken when said party is asleep. Living in a third floor apartment with two kids, and two dogs has also been challenging. Running the dogs down for their daily constitutional used to be a quick 5 minute break, a break to recharge my batteries and take a few deep breaths before returning to the craziness. Now, the dogs will have to cross their legs until Addy is napping or contained in her high chair before they will be able to empty their bladders. Sacrifices will be made all the way around, including Keegan having to clean up his room more thoroughly. Life is rough with a mobile little sister!

All jokes aside, it's been emotional watching Addy learning to crawl. I have spent the last 10 months of her life researching, talking to other parents with limb different children, and worrying about how and if she would learn to crawl. Would it hurt? Would she be strong enough? Would she skip crawling all together and just go straight to walking? All my questions were answered when she began her hybrid crawl/scoot across the floor this week. Tears were shed, we clapped and squealed in celebration. Even big brother proclaimed how proud he was of her (proud mama moment!).

It's been a crazy week, and I'll be spending this week doing more of the same, and counting down the days until husband's return to us.

The Glue...But What's Next?

I was never good at the school thing, I struggled with my grades through high school, keeping my grades just above eligible to be able to play softball. When I was accepted to my dream college I was elated, but I was freaking out. What in the hell was I going to major in and do with my life? Nothing really stuck out. I knew I had to choose a major where math and science were at a minimum, and writing was at a maximum. Communications seemed to be a good fit for me, so I followed in my mother's footsteps and graduated with a degree in Organizational Communications.

I was lucky enough to be one of the few to accept a job before I had even received my diploma. I packed up what little worldly possessions I had, loaded up a U-haul, and with my father's help, drove the 1000 miles and countless hours and potty breaks from Athens, Ohio to Longview, Texas for my first big girl job. It was hard, not the job, but being in Texas. Nolan had found out a mere month after we started dating that he would be deploying. In true military fashion, we were engaged within months of knowing each other. I spent my days in Texas working 90 hour weeks at a job I hated, knowing I had made a huge mistake in accepting. I spent what little free time I had Skyping with the love of my life who was in a war zone halfway around the world. 

Nolan came to Texas for his R&R in September, and we spent every waking moment with each other. There were some little white lies told to my boss in order to take time off, time I hadn't accrued yet, but you do what you can for love, right? We talked about our hopes, our dreams, and our life together in the future. We planned where we would live, what our dream house looked like. We talked about how we would raise our imaginary children, and how our weekends would be spent at baseball field in the summer, and on the bleachers in the fall. "I want a mini Nolan...an exact replica of you!" I said, hoping I would have a boy first, and a girl second. On a Friday afternoon, after having all of our wedding planning dreams dashed by each side of the family, we ran to the Greg County courthouse and were married at 2 o'clock in the afternoon. 

Our honeymoon was spent at an airport saying heartfelt and tearful goodbyes. Onlookers held their hands over their hearts with sympathy across their faces as they watched us snuggle in airport seats at the terminal. We made the most of what little time we had left, trying to console each other, telling each other that the months would fly by and we would be together again starting our lives before we knew it. 

The months did fly by, and he came home to me safe and sound. We spent several getting to know each other again, I think we were both so excited about his return that it came out as nervous energy. I had spent months planning for his return, I had all the ingredients to make his favorite dinners, I had raided the local Victoria's Secret, and had even laid in enough booze that we never needed to leave the apartment. Once we were back to being us, there was talk of starting a family, and before we knew it, I had my head in the toilet every time I smelled food. Nine glorious months, our son, Keegan was born. 

From that moment on, my life has been solely dedicated to my family in every aspect of the word dedicated. I am the cook, the cleaning lady, the chauffeur. I am the nurse when they are up sick with a fever, and the exterminator when a spider is spotted. I wipe noses and butts, play Batman and dinosaurs. I am the glue in our family, I keep the watchamacallit moving. I am a homemaker, and I love my job, and I truly believe that this is what I was meant to do. With the addition of Addy into our lives, it's only made the job crazier and more rewarding.

There has been talk of adding another munchkin to the craziness, but after Addy's less than zen entrance into the world and a bet I have with my mother, I think our family might be complete. I am both okay with that, and heartbroken. I complained my way through two very different pregnancies, but overall, I love being pregnant. I love the idea of growing a human, a tiny sea monkey that totally controls your body for nine long, heartburn ridden months. I love the moment you meet your baby for the first time, the moment they imprint themselves on your soul. The moment your world is shaken tot he core, your heart grows bigger than you ever thought possible, and you welcome your little one into the world. It's hard to believe that I will never have that experience again, which is why I hold my own birth story moments so close to my heart, running through every detail in my mind over and over as to not forget a single moment. I want to be able to look back on their births with them someday, telling them of the emotional moments they came into my world and changed it forever.

So while I am heartbroken, I am happy. I have two beautiful kids that fill my life with just as much love as frustration. They are healthy, they are happy. They are crazy, they are ornery, but they are mine. They are the best thing I have ever done with my life, and I couldn't be prouder.

With Keegan getting older and closer to entering into school, and Addy growing up faster than I ever imagined possible, I'm beginning to wonder what the next phase of my life holds. Obviously, I will continue my everyday duties of mommy hood. The butt wiping and bug squashing will continue for a few more years before they ignore me completely and demand I drop them off around the corner as to not embarrass them in front of their friends. So what's next for me?

I've been tossing around the idea of opening up a shop on Etsy, the problem...I haven't a clue how to start my own business. With all of the crafty things I've been making for friends and family and how much I enjoy not only the process but the reaction my creations receive, I know I would love it. The issue? Finding both the space and time to research how to begin, and create enough of a stock to actually open the shop! I recently finished a quilt for my best friend's daughter, and it was one of my favorites I've ever made! I'm working on a friend's wedding flowers, made completely from fabric and ribbon, and while tedious, they are turning out beautiful and insanely unique! I'm not sure which direction I would go with the shop, but the whole idea is intriguing! I would be able to continue to pursue my passion of creating things, while helping to provide for my family with flexible hours and being able to still be the mommy I am to my crazy babies.

I guess I need to get my butt in gear and start researching what to do...

My work space...also known as my dining room

Quilt for my best friend's daughter and her new big girl tree house bed

Soaking up the Virginia sunshine on our road trip

We Survived the Plague!

Not literally, but close enough. My wonderful husband was kind enough to pick up some kind of nasty cold a few weeks ago and bring it home to share with the rest of us. He was miserable for a full 48 hours before Keegan started showing signs of coming down the same crud. Hours later, my sweet baby girl was sneezing, coughing, and could barely keep her eyes open.

Having a sick kid is terrible, having two is downright miserable. We used the "divide and conquer" strategy, my husband sleeping on the floor with Keegan, and my poor snotty baby girl in bed with me. Keegan's fever kept spiking and he would wake up screaming a blood boiling scream, so shrill and heartbreaking it almost killed me. Addy was congested and coughing and gagging on her snot, which put me into mommy freakout mode. I dug out her breathing monitor I used when she first came home to the hospital, just to make sure she didn't stop breathing in her sleep (neurotic, I know). And on a Sunday night around 2:00 in the morning after three solid hours of screaming, we made a trip to the emergency room only to find out that Addy's congestion had caused a double ear infection complete with a ruptured ear drum. The plague. It really was the plague.

I spent almost two weeks cleaning sheets, spraying Lysol, and dosing out medicine to the kids and the husband who toughed it out and never missed a day of work. Needless to say, I was exhausted. And once everyone else was finally feeling better and getting back to normal, I succumbed to the plague.

Now that we are all finally back amongst the living, we've been able to enjoy our time together so much more! It felt like I hadn't seen my husband in weeks, especially since he was working crazy hours and sleeping with Keegan when he was here. We had a visit from my parents which was wonderful, and celebrated Easter with coloring eggs, and candy for breakfast!

We have scheduled Addy's one year appointment with her specialist at Cincinnati Children's in August. I am looking forward to this visit, because the day after her appointment is the Helping Hands Midwest get together! We will finally be able to meet some of the families we have been keeping in touch with via social media that also have children with limb differences. I am so thankful for the limb difference community, they were such a help to me while I struggled to wrap my mind around everything that happened when Addy was born. I've been able to spread the word about The Lucky Fin Project at our nearby hospital (where Addy had her follow up after her ER stay), and put myself out there as a contact for anyone who needed to talk. I can't wait to be able to finally hug the founder of the organization and thank her for everything she has done for not only my family, but families everywhere!

Hopefully, with the plague behind us, I'll keep up with the blogging more regularly. With the weather improving, we will be venturing out more and making new memories in our new city! We have a list of places to go and things to do, and I'm anxious to start crossing things off the list. Fingers crossed for a zoo trip this week...our zoo has dolphins. Keegan will lose his mind!

 

 

Parks & Nightmares & Screaming...OH MY!

I can't help but feel like if this picture were being talked about by Andy Cohen on Bravo, he would say Addy was "throwing shade"...

We had some decent weather, finally (By decent I mean 50 degrees, sun shining...and wind that made it feel like it was about 35 degrees...)! Taking full advantage of both the sunny weather and the husband having the day off, I packed a picnic of pb&j's, grapes, goldfish, and Girl Scout cookies, and we ventured out to find a park! Keegan was over the moon to finally get outside, it's been a long winter for all of us. There was climbing, sliding, and swinging. There was also freezing, falling, and crying. I'm going to chalk it up as a successful park trip!

My big boy has suddenly turned into a scaredy cat. For months we have been doing bedtime the same way we always have. With the purchase of his new big boy bed from Ikea after the move, Keegan has been going to bed in his new big boy bed all by himself, with zero issues. All of a sudden, we are terrified of EVERYTHING. Bedtime has turned into a total nightmare. I dread it from the moment I wake up. We have tried bribing, shaming, prizes, even standing right next to him until we think he's asleep and then sneaking out. Fail, fail, fail. It takes the better part of an hour to get him to settle down and fall asleep. Once that battle is over, he sleeps for a few hours, and then the screaming begins all over again. At this point, I'm pretty sure the neighbors think we are trying to murder him on a daily basis. It's a mess.

Here's wishing something clinks soon, I need some sleep. I'm not one of those people that can function on little to no sleep. I'm a zombie, a mean one.

Fast Forward

Rather than continuing to chronicle Addy's early months, I want to get to the present. The reality is, her entry into the world was painful. It was happy. It was scary. It was all things wonderful, and all things terrifying. Revisiting those days were emotionally exhausting and trying. I literally relived every moment while writing about it, and now it's time to jump to the present because this is an amazing time with Addy.

What you need to know is this:

I struggled through August and September as a single mom dealing with a crazy toddler, and wrestling with my emotions about Addy's limb difference. I counted down the days, hours, and seconds until my husband would be back in the States, and would finally be able to hold our new miracle.

Once Nolan was home, we saw a specialist at Cincinnati Children's Hospital who was absolutely amazing. I was terrified to hear what he had to say, I had so many questions I wanted the answers to, but feared the answers just the same. Addy was examined, her scans were seen, and she was given a clear bill of health. The doctor was unable to tell us exactly why her arm stopped growing, but gave us several different scenarios of what could have taken place in utero. I hate not knowing exactly what happened, but he assured me it was nothing I did or did not do while pregnant, saying it was likely a "vascular anomaly". Technically, Addy has a form of symbrachydactyly, a congenital abnormality in which bones are missing from the arms, hands, and sometimes feet. In Addy's case, all together gone. We discussed our options as far as prosthetics go, and decided that we were not going to pursue anything unless Addy voiced an interest later on. Nolan and I both felt that because she has the use of her elbow, and her arm is very strong, we didn't want to hinder her from figuring things out on her own without the use of a prosthetic. If she decides she wants one later, we will move heaven and earth to get her the best one possible.

Most importantly, Addy has opened our eyes to a whole new world we were completely unaware of. My sister's boyfriend, Dan, was thoughtful enough to do some research while I was still in the hospital. He sent an email to my mother who later forwarded it to me when she felt the time was right. Dan had found several websites, books, support groups, and organizations all dealing with children and limb differences. The greatest of these was the Lucky Fin Project, and organization started by a mother who's daughter was born with symbrachydactyly, who took it upon herself to develop a network of support and informational materials in order to spread the word on limb differences and bring people together. There are no words to describe how amazing it was to be able to speak to other parents, and even meet a few at a get together I helped organize. I was hungry for information, for knowledge, for companionship through this journey, and The Lucky Fin Project was able to give me all of that. I will be forever greatful to Molly Stapleman, the organizations founder.

Addy has spent the past 8 months growing, learning, and amazing us. She's a beautiful little girl, both inside and out. I have finally became comfortable being out in public with Addy, for a while it was very hard. I had high levels of anxiety any time we went in public, which of course led to guilt and depression. I was so proud of my baby girl, she was unique and amazing, but I wasn't ready for some of the attention we received while out in public. It's taken me a while, but I'm better now. Now, I want to show her off. I am able to answer people's questions and not break down in tears. I carry a few postcards about The Lucky Fin Project, and hand them out whenever and wherever I can. I hope that I can help someone out there the way the LFP helped me, the way the other parents in the group helped me through my tough time. I still feel the strong need to do something, to help, to educate, and perhaps someday, I will get my opportunity. I know that Addy will do all of those things, both for me and our family and for the world around her, and I cannot wait to watch it happen.

She's amazing. She's our amazing Adalynn Grace.