15 month Paley appt

 Sometimes you just need to let off a little steam. First off, I write this with a very sick baby asleep in her bed. I should have about 20 before she wakes again. Poor thing. As if spending the day from 9-7 at the doctor yesterday wasn't enough for her, you have to throw a whatever this is vomit fest on top of it. Were in the double digits now as far as how many times we've changed her and her sheets. I'm out of sheets! I think we can all agree when you're a Mommy, watching your baby battle illness is just about the worst thing. She's not a cuddler either. We compare her to our dog "Ikey B". You have to earn his love. He doesn't give up cuddles freely. RooRoo on the other hand, well she will drive you crazy because she's starved for affection. Lately, Norah is more like Roo. That's how you know she's really sick. All she wants to do is lay on my chest and be held and cuddled. It's very bittersweet.

Monday was uneventful. That's a very good thing.

We started with X-rays and she did surprisingly well. It's not easy to control a 1 year old especially when you're tugging on their legs. Rich and I took turns roaming the halls with her and looking at all the pictures once the playroom began to bore her. We met a lot of families and children while we waited. You tend to make friends almost immediately at this place. It's not like the usual where you go in, wait, wait some more and dive into your phone the entire time. You are constantly beginning a new conversation with a parent, speaking about your kids and what you may have in common with one another and where you're from or chasing your kid before she goes into a restricted area. :) However, the mood was a little different this time. I spoke with numerous people and honestly I felt like it was a competition. It made me very uncomfortable. Not everyone we encountered was this way, but the ones that were, we steered clear of.

Who's kid had it worse?

I will be the first to say, I am so humbled by the fact that we have it much easier than most, but it doesn't change the fact that what she will go through, no child should have to go through.  Almost every time I opened my mouth it was as if they were waiting for me to stop speaking so they could quickly trample it with, "Well mine had this, or mine had that so it's much worse."

Respectfully, Get over yourself. No, really.

 I am a smart woman (sometimes) and  I see right through it. And I try to never do that to people. Being supportive means truly listening, not making it at all about you. When they are finished and they would like to know about anything we are going through, then I will tell them. I do it very matter-of-factly as well so I am not making ours seem less or more and likewise for their situation.  If they don't ask, they don't really want to know. This applies to life in general.We are all here doing the same thing, seeing the same doctor so let's just be good listeners and be supportive of each other. I cannot stand when you try to uplift someone and they point no where but South. I get it. We all have our dark moments. I know them too well. Wanting someone to think it's worse or feel worse for you....well I just will never be able to understand those types of people. What I am learning is you can find strength in your weakness during those dark moments. The tiny bit of strength you have left may inspire another parent or bring comfort to a sweet child going through the pain. It amazes me all the time how I can write an email or post, or speak to a parent during my absolute breaking point and hear, "Thank you. This really helped me."  No, thank YOU. You kept me from having a pity party so God Bless You! This entire experience is very humbling. I know so many others have it far worse than my baby girl. I see it everyday and even more so when we are waiting to see Dr. Paley. He has even said multiple times that he sees extreme cases everyday and Norah does not fall into that category. I thank the Lord for that every single day.

After about 4 hours of waiting, I said to my husband, "This is about the only place you can go and wait this long and still greet the doctor with a smile." This guy has it made.

There is no way with what he will do for us, that we would go in with anything less than open ears and a friendly demeanor. With that said, we saw him finally around 4.  We got there at noon. :) Norah went in smiling, so we did too. A team of physicians entered the room and as humans I think we are hardwired to assume the worst. Nope, Superman was just training the world on what he does best. He reviewed her X-rays as she babbled back and forth with him. Considering she had no nap, anything other than crying was a relief. As expected, she will do her Hip surgery next year. There are multiple levels to this, and her case is very minimal so she will have a Pelvic Osteotomy. This is a lower grade surgery compared to a super hip surgery. Her hip is good, it just needs work so it's not a full reconstruction like the other. HUGE RELIEF. I immediately assumed the time in a Spica cast would be shorter because of this, but I was wrong. She still has to be immobilized in the Spica cast for 6 weeks. But in Paley's words, this is minimal compared to the rest of the stuff she will do, so that is both comforting and daunting at the same time. A week or so for surgery, come home, back in 2 weeks and you're good to go. Our goal is to schedule this mid October to early November  this upcoming year so hopefully she is well for Christmas. This will all depend on Paley's schedule and assuming everything goes perfect. This whole conversation with him was such a humbling moment. The fact that we can drive there, do the surgery, stay a short time and come home is just crazy. More than half the families there have to board a plane, rent a house and all of the above. That's not an easy thing. Not to mention, they do that while their baby is having a Super Hip 1 or 2 or Super Knee so you throw emotion into it also. So you see? I know my kid has it "easy." If that's what you want to call it.

He reviewed her discrepancy with us again. Same as the last time. Two lengthenings are predicted. We will know more of an exact number with a standing X-ray in 6 months.  She will most likely be in a 3-4in shoe lift by this next time year. It's difficult to picture, but I've seen kids with much higher ones and not to brag, but Norah dominates her shoe lift. It doesn't phase her a bit.  Her upper thigh bone (femur) and lower leg bones (fibula and tibia) are all short. So we discussed rather than put an external fixator on both the top and bottom, we could possibly just stunt the growth in the right leg since the tibia discrepancy is minimal. That procedure is very minor in the grand scheme of things. He also spoke of her knee and that if it needed any work he could look at that when he's in there and make any tweaks he feels are necessary rather than do a separate knee surgery. I was sold on that for sure.  Rich and I decided we would wait until after her 3rd birthday when she's about 3 1/2 to do her first lengthening, so about May of 2015. She has to be at least 1 year out of hip surgery. We originally thought the Fall season but decided to spend the Summer in West Palm Beach at that time. :) Two lengthenings....another humbling moment.

So even though the mood there wasn't as uplifting as the last, our family as a whole was uplifted, so that's all that matters to me. Not everyone will bring a smile to your face, some will stress you more than help you and people will say the wrong thing sometimes. It happens. Leaving there feeling humbled though, I can't even explain it. To be in our situation and be able to appreciate it, well that's just God's healing right there. If you can find a better explanation, I'm all ears. And I'll sure pray for you while you try to. We left with a definitive timeline and no good news or bad news so I'd give it a gold star.

On top of that, we got to hand Dr.Paley our first fundraising check. Quite a few donations have already been made and a lot of pledges have been made as well to participate in our "Classic fundraiser". We plan to raise a lot more for the foundation between now and February. So to those that participated in the recent raffles at Rich's tournaments and all of the businesses and sponsors that have donated prizes and product, thank you so much for your generosity. Every single proceed goes directly to the Paley Foundation. It's not too late to participate in the fundraiser if you'd like to. Visit www.fishingforthekids.com and you can donate now or make a pledge and have some fun while rooting for Rich! For every fish he catches, you can pledge a specific dollar amount per fish and at the end of the tournament we will donate every single dollar to The Paley Foundation. All of the details are on the website if you'd like to check it out. THANK YOU, THANK YOU, THANKYOU!

As always, thanks to all who read and keep up with our updates and care so much about Norah. She is a lucky little girl to have so many people care about her and support her!

Norah's 1st Shoe Lift

Lions and Tigers and Shoe Lifts....Oh My.

Recap: The last time I wrote was in June when Norah met Dr. Paley for the 1st time. Since that appointment, she has achieved all of the things he said she would. She's standing, cruising, crawling and taking steps just like any other kid. He instructed us to wait for a cruiser and then begin the shoe lift process.

I am happy to say the reason I haven't written is because there hasn't been much to say. Alot of parents and families encouraged us to just enjoy her before all the treatments and hoopla began and that's exactly what we've done. Knowing we can't do a whole lot at this point, it really wasn't necessary to focus on it, nor was it worth the stress. I heard a country song recently and in the lyrics he said, "It might be off my chest, but it's sure not off my mind." Or something like that. Anyway, that stuck with me.

 Rich and I both have begun to notice her discrepancy increasing. We were warned of this. She is nearing the point of where her tip-toeing won't be possible because her foot will just hang in the air. I've noticed she actually already does this when her toes are tired. It also puts quite a bit of pressure on the hip to limp around and tip toe. So after a wonderful few months of "forgetting" about it, we've recently decided it was time for her shoe lift. It's obvious it is holding her back from walking now and obviously we want her to be able to walk so that's the plan.

 We thought it was time months ago and had her fitted for her brace only to realize there isn't a single shoe company (atleast to my knowledge) that makes hard-soled shoes smaller then a Size 4....atleast the kind that we need for her. Let me tell you, shopping for shoes for her was BRUTAL. Everywhere I went they looked at me like I had two heads when I said I needed a sneaker in a Size 2 or 3. "She's not ready for a sneaker, here's our non-walkers"......DUH. I must have heard that in EVERY shoe store I went to. But a non-walker soft-soled shoe cannot support a shoe lift, nor hold an ankle brace. "You could buy both?" Negative lady. She doesn't know what these things cost so I wasn't going to rant and rave to her. "One pair", I told her. "She gets one pair." Thus, the need for a sturdy, traditional sneaker that would last until the next shoe lift. So it was basically pointless, soft-soled sneakers that fit her, or giant Size 4 sneakers that were too big for her. I found a pair of dark brown boys shoes at one point that I was pretty close to buying and a pair of Spiderman kicks, but it just made me sad so back on the shelf they went. If this girl wasn't going to wear flipflops and maryjanes like the rest of em', she was going to have really pretty sneakers. I eventually gave up and told my husband, "We're waiting for her feet to grow because I can't deal with this anymore!"

And then I cried. Alot.

So we waited.

 Over the last week, we've discussed the shoe lift alot and the best way to go about it. During that time, I've found myself feeling a little like I used to feel. Just short and irritable. We've had such an easy time recently and quite honestly I pushed it so far out of my mind that I just forgot what it felt like to worry about it. By this time next year, Norah will be in a Spica cast recovering from her 1st hip surgery and will have had her lift and brace on almost a year. I seriously can't wrap my head around that. I'm waiting to be pinched. She will be just 2 years old. But I have to keep telling myself, it's a gift. Her doctor, the surgery, all of it....without it, she won't walk.

With that said, there are so many different parts to this situation that I find difficult. However, the one I find myself struggling with the most recently is how I am supposed to feel about it. There are 2 routes you can go.

 1: "I'm mad, sad and all of the above because this isn't normal. Kids shouldn't have to go through this. She rocks and is such a good kid and doesn't deserve it. She's just a baby, my baby." And insert sobbing here.

or 2: "This is nothing. Stop complaining because she's alive and healthy and will walk. Some kids never have the chance, some people are on their deathbeds, so shut up."

 See how stressful that can be? It's as if I can't seem to find a balance between acknowledging it and allowing grief, yet also showing gratitude and appreciation for how wonderful our life is. I'm honestly not sure what is acceptable or appropriate.

 So I'll be honest. I NEED TO CRY. Some people don't. But I do. I can hold myself together for a pretty long time. I'm pretty proud of that actually. But I have to admit, buying shoes for this little girl....I had to fight the tears. It all is becoming so real.

But I will be the first to tell you, and I constantly tell my husband, how blessed we are. The fact that we have a physically disabled daughter that is perfectly healthy and a Mom who stays home with her is enough. It's more than enough. My husband is home for dinner, walks in with a smile and is healthy. I am healthy. We love each other. Alot. We love our daughter, we love our families and they love us. We have people fighting to babysit her, to be around her and love her. We have wonderful neighbors and live in an amazing community. We have an undeniable amount of support around us.

 So you see? How can I complain about her condition when I have all of that? You tell me.

If you are not already aware, we have created a fundraiser for The Paley Foundation. You can visit www.fishingforthekids.com for more information. This will be a really exciting event and you can bet on Rich as he fishes for the Bassmaster Classic win!

Paley 1st Appointment Part 2: THE PLAN

First off, this one is long.....so have a seat.

We arrived in West Palm eager and ready for our appointment with Dr.Paley. When we arrived in the morning, Rich joked that we were like rockstars walking in as everyone shouted, "Norah! Norah!" like they already knew her and immediately came over to us with warm welcomes and hugs. He had been communicating with them since the week we brought her home so there was already a friendship there which made things a little easier. I on the other hand went in a bit nervous, a little queasy and no surprise....a bit protective of my baby. I had managed to hold it together pretty darn well until I caught a glimpse of the first of many patients we would see that day and lost my cool. Interestingly enough, he didn't have fixators on his legs like Norah would. He had them on both arms. Shortly after, we met a woman from Florida with them on her lower legs, then a little boy from Kansas who had just undergone the Super Ankle Surgery (quickly became great pals with my girl) and a young girl from Poland with one on her right leg. Needless to say, I felt like I was diving right in....there was no sitting on the edge of the steps and easing into the water nonsense. It was all in the minute we walked through that door.

We were surprised to see there was no helicopter pad or red carpet and Dr.Paley didn't come through a big wave of fog or anything.....just a normal doctor's office. :) Rich and I both had psyched ourselves up as many other parents seem to do as well and then you arrive and it's like, "okay, no big deal, just another hospital." I know at some point another family will read this and believe me, that statement will bring you comfort. When you just go in, fill out the usual paperwork, do your x-rays and wait for the Big Man, it feels normal. Like there's nothing special or scary about it. And trust me, while you're there, the more normal it feels, the easier it will be for you to not throw up your breakfast in the nearest trash can.

Norah and I played with little J.T. from Kansas while waiting. She had a BLAST with this kid. They were literally playing Tug-O-War over her piano, so cute!

Norah and fellow Paley patient "J.T." playing in the waiting room.

After several hours of x-rays, playtime and waiting, we were pleased to see him by 2 o'clock. Like everyone has told us the last 9 months. "Worth the wait." He came in and gave us a warm welcome, shook our hands and got right down to business. Now I'm going to get scientific....

Her official diagnosis is Congenital Femoral Deficiency (C.F.D.) Type 1A and Fibular Hemimelia. Type1A is the best case you can have so that's great news. Her left femur (upper thigh bone) is shorter than her right as well as her lower Fibula and Tibia (lower leg bones) are shorter also. Her leg length discrepancy is  anticipated to be 17.8cm or 7-8 inches at full skeletal maturity.  This doesn't include the foot so maybe a tad more. When she begins to stand we can get a more accurate number. This means that if we do nothing her left leg would be 7-8 inches shorter than her right, prohibiting her from putting both feet on the ground.

Her treatment plan works in two phases. Preparation Phase and Lengthening Phase. Preparation would mean any surgery on any joints prior to leg lengthening to ensure all are strong and stabile. Lengthening would be the actual leg lengthening process which would most likely be accomplished in 2 lengthenings. (2 is awesome news) We were really hoping to avoid a Hip Surgery mainly because that occurs at age 2 and just the thought of a 2 year old under anesthesia makes me sick to my stomach, however that most likely won't be avoided. The good news about that though is he didn't see any glaring evidence that she will need the Super Hip Surgery which is more complex. She would be doing the Pelvic Osteotomy. This surgery from a patient standpoint is pretty much the same but from a technical/surgical standpoint, it is less involved. So thumbs up on no SuperHip and thumbs down on Pelvic Osteotomy. Her knee looked good, although she was born without an ACL or PCL. This is a minor detail in this case though. Her ankle is rotated so it is quite possible we would need an Ankle surgery as well. We didn't dive into details on that because it so far down the road.


At age 3, we would begin lengthening. For girls, half of the length discrepancy appears in the first 3 years. So this means by age 3, her left leg would already be roughly 3-4 inches shorter than her right. Then, from 3 to say 10 to 13 year old age the last 3-4 inches would be visible at a much slower pace. So after the 1st lengthening she would most likely gain 3 inches from that and it would appear as though her legs were almost the same length. Then over the next 7 years, the remaining 3-4 inch discrepancy would be visible and we would do our final lengthening at age 10. Lengthening takes 8 months. So after her prep surgeries and 1st lengthening she would have some "time off" until about age 10 where we would complete her last surgery/lengthening. What does that mean?

                 OUR LITTLE GIRL WILL HAVE BOTH FEET ON THE GROUND!
She will run, play, dance and do all the things other kids do. Even while undergoing this process,she will be able to swim and play in her fixators. In fact, you see alot of CFD patients swimming alot because it keeps the pins clean. Below are some photos "Before and After" and other kids coping with CFD.

Before	After

http://paleyinstitute.org/?q=intro-to-limb-lengthening (This link explains the lengthening process very clearly if you have questions as to how they actually lengthen her leg)

With that said, it became pretty clear to us on the way home that this process was the right decision for her. Amputation is just crazy talk and a Prosthetic Leg was a consideration of ours for a while she but unnecessary. If she was going to spend her entire childhood in a surgical room, maybe we would consider that. I know there are other extreme cases where those options are the best route but in Norah's case, it just doesn't make sense for us. If we can give her the ability to walk with her own two legs ,that is the best thing we can do. Most of this will happen at such a young age that she wont even remember it. Sure she will remember her fixators at age 5 or 6 because she will be wearing them well into her teen years, but she wont remember the surgery itself.

For now, the treatment plan is a shoe lift and ankle brace until we begin the process. When Norah begins to stand on her own and begins cruising furniture then we will have special shoes designed to help her walk. The brace will help keep her ankle from twisting and rolling due to the platform. They will look a little bit like this:



This is Rory. Following her story has helped us SO much. You can read more about her at roryjane.com

We return in December to get more accurate x-rays of the hip. It can still continue to ossify until then, so there is a small chance the hip may be in good shape by then. He will examine her standing up as well and further confirm our plan.

Jennifer, the Patient Coodinator took these pictures during our visit. She was super friendly!

All in all, we were pretty relieved when we left. To have a plan, answers and meet the man who will perform her surgeries was comforting. Rich reminded me of something on the way home. "God doesn't make mistakes", he said. He reminded me of that and that he has entrusted her with us and chosen us to be her parents. He knew we could handle this and that we would do something amazing with it. Who knows what the mission is or what she will do,but I believe it will be something remarkable, simply amazing. The less I focus on "this happening to her" and the more I focus on the blessing and how this will forever change her in the most humbling and beautiful way, the better Mom I am to her. I don't want to be angry about it. It is so exhausting being so angry and so wonderful when I just appreciate how beautiful she is.

My husband and I will be launching an INCREDIBLE fundraiser for The Paley Foundation very soon. As some of you know, he accomplished his greatest fishing achievement so far: Qualifying for the BASSMASTER CLASSIC 2014. This was a huge game changer for our family. You can support this cause by betting on my husband! You can donate an amount of your choice per pound of fish caught at The Bassmaster  Classic 2014 or donate directly to the foundation once we post it. We will be posting website details and information soon and the fundraiser will be alot of fun! STAY TUNED!

As always, thank you all so much  for your continued support through this. It means alot to us.

Meeting Dr.Paley for the 1st time

1st Paley Appointment June 14, 2013

Last night was a little emotional. For the most part we kept ourselves busy with preparations and I could feel myself finding things to do. I must have put the ziplocks in and out of the pantry 5 times while talking with my sister in law. :) As long as my hands were busy, I wasn't letting my mind wander. I have to say, we are both doing pretty well. I thought I would be a mess but I had just one weak moment last night. I'm feeling very hopeful and keeping my faith and Rich seems to be doing okay also. I think we're both accepting it really "is what it is" and there is no changing it so we might as well start moving forward and work toward staying positive.  Beating myself up isn't going to help her although that is much easier said than done. But we're getting there. On a lighter note,  after laying Norah down for bed....a long, teary good night, Rich and I did some more reading on Dr.Paley.  After laughing hysterically at my resume compared to his, here's what we came up with:

Dr. Paley has developed over 100 surgical procedures and performed over 11,000 surgeries. I have successfully stopped the bleeding of Norah's 1st cut on her finger and it was in a really tough spot and cured many butt rashes. (alright so her cut was healed the next day...whatever)

He speaks 6 or 7 languages , some crazy number I'm not sure. FLUENTLY. 

I speak English and Baby Talk. Booyah. 

His hobbies include scuba diving, rock climbing, nature photography and fitness. I bet he doesn't  record "The Voice" religiously like I do and consider a trip to Target a hobby....

He has written an 800 page text book on the science of limb deformity correction that is an orthopedic best seller. I don't think that can compete with my famous "Butt Cream" song do you? Stay tuned for the release of my new single.

He is the most experienced limb lengthening and deformity correction surgeon in the world. (not an opinion, it's a fact) He's  treated patients from all 50 states and more than 70 countries from 6 continents. So basically he's a genius. 

To Norah, I'm Mommy, diaper changer, food feeder, playmate...you name it. I'm HER genius and Mommy knows everything in her mind. 

So I win. :) 

So far, the drive to West Palm  is smooth, weather is nice and we have a sleeping baby. Thank God because she meets "the big man" during her usual nap time. That should be interesting. Long day ahead, but we are looking forward to receiving some answers, seeing our future "home away from home" and meeting other families going through this. In a weird way, we both feel like we're headed to meet a celebrity. We've been learning about this doctor for the last 9months and have been communicating with his staff who think the world of him. So it's kinda like we already know them. 

"USED COWS FOR SALE" .....just passed this sign. Sounds yummy. 

That's all for now. We will have appointment details soon. Pray for our little girl please. :)

Knee Appointment Wednesday

Our next step was a knee appointment for Norah on Wednesday, January 23, 2013.

The last two months were more of a waiting period to observe the development of her knee.The goal was to see if it would relax and extend more on its own, if not, then we would begin some therapy to help with that. We are pleased to have received the following diagnosis:

*After her knee x-ray, he noticed a small bow in her knee that may straighten out over time or maybe not. Either way, with the lengthening procedure in the future, this is a small concern. She has an actual knee bone which is awesome because in some cases like hers, a bone may not even be present. Although her left leg is stiff and cannot extend the same as her right leg, he noticed she was kicking and squirming just as any other baby would so continue what we are doing with her as far as playtime is concerned.

*After her hip x-ray (which she protested greatly and broke Mommy's heart) we were so pleased to see her hip having some ossification present. In babies, the cartilage does not transition into bone until ages 6-9 months. So we were very happy to see that the process has atleast begun with her hip. We are very hopeful that she may be able to avoid having hip surgery, but we will not know for sure until her cartilage has turned to bone at age 9 months. At that point we will know if her hip is indeed "normal".

*We return to the Orthopedic in 4 months (WAHOO!) after meeting Dr. Paley first. We plan to meet him in June and go back to Orlando Orthopedic shortly after. It will be nice to have the next 5 months "off" from doctors pertaining to her leg. Once we meet Dr.Paley's group, we will have a timeline and exact diagnosis and will take that to Orlando Orthopedic to do the same.

We are so very blessed to have this news! We are so happy to be able to just enjoy her as a baby and watch her grow and change. She is now rolling over back and forth, kicking, babbling like crazy, laughing, beginning to scoot, sitting upright with assistance and excessively drooling. :) It is so comforting to see her meeting her milestones without any delays. Here are some pictures of Norah enjoying some playtime!

Right before rolling over

Rolling back and forth on the patient table at her appointment!