MIA

I haven't written on this blog in such a long time! I started working and have been totally swamped with the that and the boys. With that being said, everyone seems to have adjusted well and we are all starting to settle into our new routine.

Merritt has another checkup coming up in the beginning of August. I am starting to get really nervous again. I have this terrible feeling in my tummy that we are going to get bad news about his LLD. He seems to have had a recent growth spurt but his left leg doesn't look like it grew along with it. I have been told that it is possible that his left leg and foot may grow at a different rate than the right. Anyone have any imput?

Used Orthotics

Merritt has outgrown his first pair of Mitchell Boots and his first Dobbs Bar. A little part of me wants to put both in a box and save them for forever, but a bigger part of me knows better! I found this website for donating used orthotics to needy children.

Here's a bit from the website:

In Uganda and Papua New Guinea they are utilizing used AFO's. "We accept its not ideal to recycle AFO's but there is no local skill for making custom splints. So it's a matter of having enough pre-loved AFO's to find one to fit the required foot. The kids are actually lucky if they get a pair of shoes to help maintain position."

I think this is a great purpose! I've found a few other charities on the web that are geared toward treatment of children born with clubfoot, but this was the only charity I found that actually accepts used orthotics. Does anyone know of another?

Anyway, I'm sending Merritt's in... I hope you choose to do the same!

Playground fun!

A few days ago I thought it would be nice to get out to the park. "What's the big deal?" you ask. Well, here is South Florida it is already sweltering out. So, to be outside and be doing anything other than swimming is just ridiculous. What can I say? We are ridiculous! :)

Walking!

Hey everyone! As of May 1st Merritt is fully walking! woohoo! He is having so much fun being chased by his big brother. Actually, his first real distance was from our TV to the coffee table. Here's the story: Big brother was intensely watching Chuggington and Merritt decided to shut off the TV... of course. So, Big Brother got off the couch and started walking towards Merritt; You know, to show Merritt who's boss. Well, Merritt got the biggest smile on his face, squealed, and then walked as fast as he could to the coffee table in order to escape! It was SO CUTE!

Ever since that moment, he has been non-stop! Check out this video of our little man walking on the beach.

Officially, "Get Merritt to walk week"

I have declared this week "Get Merritt to Walk Week" in our house. Merritt has been so close to walking for months now. Of course walking is going to be more difficult for him than your average baby, I know. I actually had Merritt evaluated by a non-for-profit in our area. The org provides services to kiddos who are in need. My goal was to get Merritt in some physical therapy... for free :) Well, in order to qualify Merritt had to score low on a Patel test (I need to google that and check the spelling... sorry!) Basically, a few specialists sat down with Merritt and played with him while scoring everything about him. He scored WAY to high to receive any services. The whole thing just makes me angry. Merritt didn't qualify because he is an intelligent little guy and because he doesn't have an "established condition." Of course, no one could explain to me what exactly that means. Fortunately, we are in a financial position where we can send Merritt to PT and just pay for it (well, for whatever our insurance doesn't cover!) But what if we couldn't afford it??? The non-for-profit would have just turned Merritt away just because FH isn't an "established condition?" Sorry if I am rambling! Anyway, point of all this... I guess this is where my education will come in handy. I am going to figure out this established condition non-sense and put a stop to it! Anyone with me???!!??


Aside from all that ranting... Merritt is doing well with his elevation on his shoe. I had to take the shoes to be "tweaked" a bit. The orthotist we see has been following Merritt closely and adjusting the bottom of his shoe to better suit the way Merritt stands and is walking. It is pretty cool and very helpful. He even cut off the original velcro for us and added laces. The velcro wasn't holding well at all. Lesson learned... always buy laces!

Hopefully, next week, I will be able to tell you all about how Merritt is chasing his brother around the house!

OH, and just in case any of you were wondering... I PASSED THE BAR!!!! I'm officially an attorney!

Hope all is well with all of you!

New Shoes

Merritt finally has his new shoes. We got them about a week ago, but I am totally slacking on keeping up with this blog! Hopefully this will get easier as the kiddos get older :) Anyway, just wanted to share a picture.

Hope everyone is doing well!

Decisions, decisions

I took Merritt to our CF doctor last week for his check up. Merritt's foot is doing well... whew. Dr. Ramono demonstrated some more stretches he wants me to do with Merritt a few times a day. I HATE doing them b/c Merritt hates it and it seems to be kinda painful. Of course, we are still going to do it, but I just wanted to complain a bit :)

I want to make sure that we are doing all the stretches correctly, so I am going to start PT with Merritt again. There is a nonprofit in our area that helps with the cost of services for kids that need them. The problem is the kiddo has to "qualify" by having a "qualified issue" and some type of developmental delay. I made Merritt an appt for an eval on April 22. I'll keep you guys updated on that one... lets keep our fingers crossed!

As for his LLD, Dr. Ramono disagrees with Shriners' diagnosis in one respect. He believes that Merritt will definately require at least one lengthening. As much as I want to believe that he is wrong, I have to agree with him. So, the problem which faces my family now is, when should we do this lengthening? Should we follow Dr. Paley's advice and have a lengthening done when Merritt is 4? or should we follow Shriners' advice and wait until he is older? Both opinions have valid arguments in their favor. For example, Dr. Romano explained that one benefit of having a lengthening early is that it would help keep Merritt's CF from relapsing. You see, because of the discrepancy Merritt is always tip-toeing which is a big NO NO in the CF world. On the flip side, you can only obtain about 25% of a patient's total height in length during a lengthening. When Merritt is 4 he will be much shorter than when he is a teenager. Therefore, we could obtain more length when he is a teen and that may increase our chances of only one lengthening. I hope this is all making sense... sorry if I am babbling! I guess we really need to wait and see what happens over the next couple of years. Those of you with older children out there know that 4 years old is going to be here before we know it! So, when I allow myself the think about it, I really feel the pressure.

On a lighter note. We dropped off Merritt's little shoe at the orthotist last week to have the elevation put on it... one inch! I think that this will really help him obtain the balance he needs to start walking. He is trying SO hard to walk now. It is so darn cute! Actually, over the past couple of days he has been making huge strides. He has been standing by himself very often and for longer than ever. I better get on my running shoes... I'm about to have a 2 year old and a 1 year old, each running in different directions! Gotta love it!

Shriners RULES!

Hi there everyone! Sorry I have been MIA. My laptop is like a toddler magnet!

Anyway, our visit with Shriners went really well. Here's the brief overview. In their opinion, Merritt does in fact have Fibular Hemimelia. We will have to go back every six months for a while until we compile 3 sets of xrays. At that point, they will enter all the data into a Moseley graph and then give us an estimated LLD. If the estimate is under 5 centimeters, then Merritt can opt for the epiphysiodesis, If the estimate is over the 5 cm, then Merritt will have to have his leg lengthened... and of course, the possibility of 2 surgeries. BUT... and this is my favorite part... . Here's what the PA said, and I quote, "It is possible that you guys have a lengthening in your future, but probably not." WOOHOO! Okay, I'm not going to get my hopes up too high, but I sure have my fingers crossed!

So, on top of all that, the hospital was great! The whole place was really geared towards the children and their caregivers. Tons of toys, playhouses, playgrounds, and even a little gift for each child in the waiting room! Each member of the staff that we spoke to was extremely sweet and helpful. They even made strides to include my older son by giving him stickers and talking to him. That was huge! Turner really felt included and that helped him to stay in a much better mood :)

As for Merritt's foot, we have an appt with our amazing footy man, Dr. Ramono, on March 17th... (deep breaths and fingers crossed. Man, I seem to be doing a lot of finger crossing lately! haha.)

Alrighty all... Mickey Mouse Clubhouse is about the end. My time is up! Hope you all are doing well.

Shriners visit coming up this week

Merritt has an appointment at Shriners Hospital in Tampa on Wednesday. We are excited and anxious about this. If you have read my previous posts, you know that we have been given 2 estimations regarding Merritt's LLD. The first at a little over 2 inches and the second at almost 5 inches. I am thinking that a third opinion will really help us to understand Merritt's leg.

Plus, Shriners seems totally awesome! If you haven't checked out their facilities, you can at this link... Shriners Tampa. I watched the online tour and was really impressed.

Well, our appointment is Wednesday morning at 10:30. The whole family is going. So, it should be an adventure. 4 hours in a mini-van with an almost 1 year old, a 2 1/2 year old, a big grumpy 29 year old (yes, that would be my husband, ha), and me - as a nervous wreck! My biggest fear is that this doctor is going to give us even more bad news; that Merritt's LLD is going to be even larger. Honestly, I don't know how I will even handle that.

Please keep us in your thoughts and prayers. I'll let you guys know how it works out!

The Bar

Yes, I am alive. Sorry I haven't posted in a while. I've been in a book somewhere! Thanks to all of you who have emailed me. I am so happy to hear from all of you and hope that everything is going well for you and yours.

Visit with Paley Part 2: LLD plan

The consultation with Dr. Paley was rather quick... well, I thought it was quick. Dr. Paley checked out Merritt's x-rays and Merritt's leg/foot. After commenting on how fabulous Merritt's foot was looking, he began talking about what is wrong with Merritt. Well, as it turns out, Merritt doesn't have Fibular Hemimelia or Tibial Hemimelia. Both of those bones in his left leg are shorter than the ones in his right leg. So, really, he just has one leg proportionately shorter than the other. Apparently, there is no wordy diagnosis for Merritt's condition. A fact that I find a little weird, but whatever. I guess, "He has a 'short-leg" will have to do for now :)

Dr. Paley explained that Merritt's LLD at skeletal maturity will be well over 4 inches. This news really shocked us. This estimation was almost 2 times as much as our footy doctor's estimation. UGH. Well, after talking about that a bit he explained what his plan would be for Merritt... According to Dr. Paley's SUPER expert opinion, Merritt's LLD requires 2 lengthening surgeries to correct. One at 3 years of age and another when he is a teenager... Double UGH.

So, that news really sucked. We were really hoping that Merritt would at the most require one corrective procedure. My heart was just through the floor. Then he continued on to explain that there are many things about Merritt's condition that we will just have to "wait and see" about. Such as, is he missing any other bones or ligaments or whatever. (Oh, that reminds me - Merritt is missing his ACL in his left leg. Anyone have any advise how to keep a little boy out of contact sports? Man oh man.)

We are set to bring Merritt back to Dr. Paley in March for a follow up visit and to get Merritt's first shoe elevation prescription. More on that later!

Visit with Paley Part 1: Four toes...

So, I'm studying away and need a break. I thought I would share a bit of our visit with Dr. Paley. Rather than get into any real meat of the visit, I kinda got off on a tangent... this is one of my favorite stories to tell when I am kinda down about Merritt's funny foot. I hate to think that he will suffer and I hate not knowing exactly what is going to happen with him. So, whenever I start thinking like THAT (there I go again!) this really makes me feel better. But I promise to get into some "meat" soon... Anyway, here ya go!

We reached Dr. Paley's office, checked in and were sent directly to have Merritt xrays done. While in the xray waiting area, I "overheard" a mother talking about her daughter. Her daughter, now about 9, had been diagnosed with FH and had a large LLD already... about 6 inches. I couldn't help but cry while listening to the mother speak. She was so proud of her daughter. You see, the little girl had taken her LLD and ran with it... literally! She was an all star athlete on pretty much every sports team you can think of. The woman must have noticed me crying and then we got to talking. I explained to her what it meant for me - mom of this little guy in my arms who is not even able to sit up yet - to hear that her daughter was so, well, functional. I wasn't crying because I was happy Merritt would most likely be able to play sports, I was happy because he would most likely walk. I know, I know... our clubfoot doctor had told me that Merritt would walk, but I guess it just meant more coming from another mom who knows what I am going through. Plus, she was southern and had a serious accent. For some reason, I always trust Southern Folk more :P

So, we talked. Then, the cutest thing happened. The little girl - who was drop dead gorgeous, btw - walked out of the xray room. Her mother said to her, "Look here, this little baby has what you have." Then, and I will NEVER forget this, the little girl said to me in true Georgia Peach fashion, "Yeah, but see, I's only gots for toes!"

Dr. Paley to be on Fox!

I just received this email from Dr. Paley's office...

I thought that you might like to know that Dr. Paley will be featured tomorrow, (Thursday, Feb. 4) at 10:00 pm on Fox 29. This segment will highlight his work with a very special 4 year-old girl from Philadelphia. This patient was born with Congenital Femoral Deficiency resulting in a deformed hip and a significant limb length discrepancy. When she was born several doctors advised Eva’s parents to amputate her leg which would have resulted in a lifetime of artificial limbs. The results of Dr. Paley’s intervention are truly remarkable and this child eventually will have two legs of equal length.

Leg Lenth Discrepancy...UGH!

As many of you know, Merritt wore a cast on his entire left leg for the first few months of his life. Practically, this meant that I only actually saw his little leg for a couple hours each week during his cast changes. Well, at one of these cast changes I noticed his left leg seemed to be shorter. After alerting the doctor, Merritt was forced to endure manipulations, stretches, and finally x-rays which confirmed what I had feared most from day one... there is more wrong.

Merritt was diagnosed that day with Fibular Hemimelia. A condition that Merritt's doctor explained, was not my fault. How could it not be my fault? I made this little man... I screwed him up... all of these thoughts whirled through my mind. I know I shouldn't feel that way, but I would be lying if I said that I still didn't believe it to be true.

The doctor explained further that Merritt's leg will always be proportionately shorter than his right leg and that this most likely caused his clubfoot. He went on to say that most of the children born with Merritt's condition have four toes, at the most, and we should feel "lucky" because Merritt has all five. Yeah, that's what I felt... lucky.

Treatment... nothing we could do then. Just wait and see. Wait and see how much of a discrepancy Merritt would have. At that point, the little guy was just too little to properly predict. But, the doctor gave his best guess, which was about 2 inches at skeletal maturity. 2 inches would require one leg lengthening.

But what happens if there is going to be more of a difference? How is a leg lengthened? I needed answers.

As soon as we made it home I started the internet research. I joined blogs and emailed doctors around the country. I actually emailed Dr. Dror Paley at 2:30 am and he called me back at 7:15am that morning!

At the time, Dr. Paley was practicing in Baltimore at the time, but informed me that he was considering moving his practice to Saint Mary's Hospital in West Palm Beach.... 45 minutes from our home!!!! Seriously???? YES!!!!! If there was ever a time to thank God... I think I found it.

Long story short, we made an appointment to see the good doctor. More on that later! Now, my time is up and I have to STUDY! (Yup, studying for the Florida Bar and taking it Feb 23 and 24. ahhhh!) :)

Bracing

The above photo is of Merritt's FIRST DAY in his brace... an exciting and challenging time!

I feel like I could write an entire book on boots and bars! I did so much research, emailed doctors, moms, dads... needless to say I became a little obsessed. I guess it was my way of controlling some portion of my son's situation.

After all the research, I decided that I NEEDED to get Merritt in a Dobb's brace and Mitchell Sandals. For more information on these items, just click!

While our physician regularly proscribed the Mitchel Sandals, I was the first in my doctor's practice to use the Dobb's brace. In fact, I had to convince the man that the brace was worth trying. Fortunately, it all worked out and Merritt was in his Dobbs brace and Mitchell Sandals as soon as his last cast was removed.

Of course, we went through the normal h*ll of starting bracing. Merritt wasn't accustomed to having both of his feet on "lock down." But, after about a week, he was well adjusted and everything has been smooth ever since! He even began crawling at about 81/2 months... a day that I was so looking forward to :)

Diapering a casted baby

So, here is one of the best tips I can give to a caregiver of a casted baby... DOUBLE DIAPER!

Before we started double diapering we had a leakage incident... oh man. That poop leaked right into his cast and the cast just soaked it up! So gross, I know, but I have to share in order to make my point. I went to get Merritt's cast changed the very next day - the earliest appointment I could arrange. He already had a little rash on his leg! It happens so quickly.

From then on, we double diapered. Basically, put on the first diaper and then a second. MAKE SURE the edges of the second diaper are on the outside of the first - offering an extra layer of protection. At some point, I started using a size larger on the outer diaper. You don't have to throw away the outer diaper every time you change the baby. Just if it gets leaked onto... which will happen!

Bath time

My favorite part of going to the doctor to get a new cast, was being able to bathe my baby boy. I had no shame, I walked right into that doctor's office with my baby bathtub in hand. I didn't care how much stuff I had to carry... diaper bag, breast pump, lunch for my toddler, whatever... I was bringing that tub!

Merritt's first bath was given in the doctor's office :)

TIP: Your baby's legs will be very sensitive from being in the casts. I used very gentle soap with no fragrance and a super soft washcloth. I never applied any lotions to his leg. What to bring to the visit: tub, two bath towels (just in case of a little squirt!), baby soap, washcloth, and 2 clean changes of clothes (sometimes putting the cast on can get really goopy.)

Doctors, doctors, doctors

First things first... we needed a doctor. After much internet research we figured out that Merritt needed Ponseti treatment for his clubbed foot. (Oh, forgot to mention this in my last post. We were unaware of Merritt's short leg until he was about 4 weeks old. At this point, we thought we were dealing with a clubbed foot only.)

(For more information on Ponseti clubfoot treatment, please visit the official website for the Ponseti International Association.)

We found a pediatric orthopedic surgeon through our insurance company. Went to her. She told us that she followed Ponseti protocol. Merritt was put into his first cast at that visit. He was less than one week old and had a cast from the tip of his toes all the way up to the very top of his leg. It was awful. I cried and cried and cried. Then, I would calm down a bit, until it was time to change his diaper or give him a sponge bath, and I would cry some more. It was just terrible. I hated seeing my precious newborn in a cast.

Each week, I would make the 2 hour drive to the doctor and Merritt would be fitted with a new cast. The process was grueling. First, the old cast had to be sawed off and then the doctor would stretch Merritt's foot into a more corrected position. Merritt was be crying in pain during these stretches. Finally, the new cast would be applied and Merritt would normally fall asleep.

During these first few weeks of treatment I had the opportunity to research club foot treatments. Certain aspects of this doctor's treatment just didn't add up with the Ponseti protocol I was learning about. Most alarming, was that this doctor wanted to put Merritt under general anesthesia in order to perform a tenatomy (a procedure where the doctor cuts the child's Achilles Tendon.) According to Ponseti protocol, this should be an in office procedure using only localized anesthetic. I did not want my newborn to be "put under." So, I found a new doctor. We had to drive even farther, but it was well worth it!

The new doctor, Merritt's current doctor, is just amazing. At our first visit, he sat with us and he explained the treatment and how it works... the REAL Ponseti treatment. Our previous doctor had wasted weeks of Merritt's treatment by falsly claiming she was following the Ponseti method. It was so upsetting, but at least we were finally on the right track.

Point of this is... If your child is born with a clubbed foot or bilateral club feet, please check the list of Ponseti CERTIFIED doctors before making your first appointment. You can find this list on the website linked in the beginning of this post.

Merritt's Birthday, March 5, 2009

We were unaware of Merritt's "defects" before he was born. During my C-section, I was able to see my son all wrapped up in a blanket. He was absolutely beautiful. While anxiously waiting in recovery for my newborn son to return to me, my husband walked in... with no baby. I remember what he said so clearly, "Honey, everything is fine. He is fine. He just has... well, a little boo boo." I could see the anguish behind his smile. At that point my husband began to explain exactly what was "wrong" with my perfect little baby boy. In that moment, my world came crashing down.

I kept reassuring myself, "Niki, it is only his foot, we can get through this, we can fix this." But, nevertheless, front and center of my thoughts was always, "What if something else is really wrong? Does he have a syndrome and we just haven't figured it out yet? Will he ever run and play with his brother? Will he ever be NORMAL?"

Please understand that during all this, my love for my son was always there. Not for one second did I ever wish him away. I just wanted to make him better. I didn't want him to suffer... ever.

Here is a photo of Merritt's little foot at birth.