BTW and FYI: a resource list

Folks, I hope you understand that I was exaggerating earlier when I said there is no information about childhood amputations out there. The truth is that there are a few resources out there for parents with limb deficiencies and amputations. Here are some articles and links with some good information on the subject:

http://child-amputee.net/information/articles/for-families-of-children-with-amputations/
~ a good article on parenting children with limb differences

http://www.amputee-coalition.org/fact_sheets/help_child_understand.html
~ a list of children's books geared towards helping children cope with limb loss

http://limbdifferences.org/
~an online support group and resource center for parents of children with limb differences

http://child-amputee.net/
~ The international child amputee network

http://www.circleofmoms.com/moms-of-children-with-limb-differences.
~ a message board support group of moms with children who have limb differences

http://www.littlefins.org/page4.html
~ a list of resources

http://arewethereyetla5.blogspot.com/2009/11/raising-child-with-limb-difference.html
~ another blog

http://www.bornjustright.com/
~ a blog

If any one actually reads my blog and has the need, please feel free to comment if you have more resources. I will add more in as I find them.

There is no book titled "What to expect when your baby is expecting an amputation."

 

Well Brodie finally had his first real doctors appointment with an orthopedic surgeon. After looking at Brodie's x-rays this is what he told us.:
 

~ The two fingers on his right hand do not have the best movement. The thumb moves well but the pinky does not extend and is stuck in a curled up position. In addition,the pinky and thumb cannot touch each other. He will need to have hand surgery when he is a little older (age 4-5) to fix the tendons and give him a better range of motion. We will need to see another separate specialist for this and he may need more than one surgery on it.

~ It turns out that Brodie's "good" leg (the left one) is not that good after all. His fibula has extra bone growing off the top of it and it is not connected to the tibia . When Brodie is age 2-3, they will have to do another surgery on that leg. They will go in just below his left knee to remove the extra bone and fuse the fibula and tibula together.

~ They will need to amputate the lower foot part of the left leg.

~ On his right leg, they will need to amputate through the knee. The right thigh bone is malformed on the bottom end and has extra bone growing off of it. So when they amputate that lower leg, they will also have to open up the right thigh and remodel the femur, taking off the extra bone.

So this is a tentative schedule for the treatment and surgeries he will need.:

~ At six months old, they will need to do an MRI to take a closer look at the blood vessels, tendons, and bones. To take an MRI, one has to lay completely still for over an hour. Since they cannot make a baby lie still like that, they will have to put Brodie under general anesthesia for the test. This will happen in December or January.

~ At nine months old, they will do the first surgery, both of the amputations and the reshaping of that right thigh bone. He will be in the hospital for 2 to 3 days and will need up to 6 weeks for the incisions to heal completely. After that, he will be fitted for prosthetics and will need physical therapy 2-4 times a week.

~ At 2 to 3 years old, they will need to do the second surgery on the left leg, to repair the tibia and fibula. He will be in the hospital a couple of days for that and will probably need to wear a cast for a month or two.

~ At ages 4 to 5, he will begin having whatever surgeries he will need on that right hand. I'm not yet sure on the details of that surgery or how many surgeries for that he will need.

This was a lot of information to process. For some stupid reason (maybe denial) I thought Brodie would only need one surgery, the amputation, and we would be done with it. I was thrown off balance when the doctor started talking about other surgeries. It was a surprise to find out about these extra bone growths and the additional problems that he has with his "good" leg and his hand.

One thing I can definitely say is that I was not a big fan of that orthopedic surgeon.  It felt like every time we asked him a question, he would cut us off and give us very short, patronizing answers. He seemed very excited about the prospect of doing such unusual surgeries on our child, yet he seemed annoyed with us, like we were bothering him with our dumb questions.

 I'm sorry, but I really don't care how stupid or irritating our questions are.  This doctor wants to cut off my baby's legs. I want to be able to ask him anything I want to without any hesitation. If I ask him why the sky is blue, he better look at me with a straight face, like its the most intelligent thing he as ever heard, and give me a good answer. There's no other place or person that I can get this type of information from. Have you ever tried to google the words "baby" and "amputation" together? You don't get a lot of hits. There is no book entitled "what to expect when your baby is expecting an amputation".  So who else am I suppose to ask if not the doctor?

So my husband and I sat back and looked at our options. Then we made a really big decision. We decided to move cross-country to a big city where our family lives. We moved into a house that is within short walking distance of a major children's hospital. It was the best thing for Brodie. He needs to be close to specialized care and family support.

Now to start all over and find a new doctor. Yes, I am planning on being picky. There is an award-winning pediatric orthopedist up the block at the children's hospital. We are going to try him first. If I don't like him, I will take Brodie to Shriner's hospital, which is two hours away. I am not afraid to search for the right doctor. I know that the best doctor for Brodie is out there and I will not stop until I find him (or her).

Sometimes you just have to be a pushy bitch...

There are doctors and there are specialists. Then there are specialized specialists. For example, we have a general pediatrician.  I also know of several local orthopedists. But then there are pediatric orthopedic surgeons and thats who Brodie needs to see to get the right medical treatment for his condition.

There are less than a handful of pediatric orthopedic surgeons in this whole state. A handful of surgeons to treat more then a thousand children who need them. Children with club feet, or spinal problems, or bone fractures. So these surgeons are booked months in advance. It can be very hard to get appointment with one.

It's even harder when you live in a rural area. Most of these surgeons work in Phoenix, more than three hours away from where we live. When our baby can't tolerate sitting in a car seat for more than 5 minutes, Phoenix feels as far away as mars.

So our best option is a children's orthopedic clinic closer by in Flagstaff. This clinic involves the surgeon visiting Flagstaff maybe once a month. On that clinic day, the surgeon sees hundreds of children from all over northern Arizona and even parts of Utah and New Mexico. So this clinic is also booked months in advance.

All the children who come to this clinic are funneled through a single harried over-worked case worker.  For weeks I have been working with this case worker, wading my way through paperwork, insurance approvals, and referrals to try and get an appointment for one of these clinics.

I have been very polite and sweet to the people I have been trying to work with, bored receptionists and apathetic medical assistants, only to get brushed off and stalled. They tell me that the only possible appointments I can get with the specialist, or with the clinic, is in early December or late November, months away.

Meanwhile, Brodie's bad leg has been having terrible muscle spasms, where the whole leg gets rock hard and starts to shake. One time, when we were changing his diaper, his good leg actually popped out of joint and popped back in like nothing even happened.

So an appointment months away means months of Brodie of having pain. Months where he is losing valuable treatment and therapy time, when his bones are still malleable and soft, maybe even repairable. Months that could cost him mobility later on in his life.

Yet the very busy case worker and the over-worked medical assistants just keep on telling me to call them the next week because there is not much they can do.

Finally, I reached a point of overwhelming frustration, where I didnt  know where else to turn. I shared my feelings of helplessness with my husband. My husband can be very determined when he wants to be. "I am going to harass the hell out of these people until we get a better appointment." he tells me.

The next day my husband calls me at work. " I got appointments for this month with two different pediatric orthopedists." he says. One of which who has particular hard to get an appointment with. "How did you manage to get that?" I asked him.
"I wouldn't get off the phone with his medical assistant until she gave it too me. I am not above pleading and begging, or even getting a little tearful. I would have cried if I had needed to. Nobody wants to hear a grown man cry."

A good friend told me "Stop being nice about it and start getting loud. You are not in this to make new friends or have people think you are polite. You are in this to get medical treatment for your child.  Do not take no for an answer. Sometimes you just have to be a pushy bitch."

So I took my cue from my husband and my friend and I showed up at the office of the orthopedic clinic and asked to see the case worker. "Well he is really busy." the receptionist tells me.   "That's OK,I can wait."
Then I cornered him in the hallway. He tells me "Well maybe I might be able to get him an appointment with the clinic this coming Monday. But its a long shot."
That's when I got a little irate and I told him that I have no problem showing up at his office every day with a screaming baby until we get a better answer than that.
His eyes got wide and he asked me "you would actually do that?" 
You betcha. I will stalk you. I am not going to go away until you figure something out.
His attitude changed quickly. Finally he relented and said "I will definitely get you into the clinic on Monday."
Damn right you will.

Then I called the absentee medical assistant who never calls me back and has been lagging on pushing through the referrals Brodie needs to go see these doctors. I left her a tersely worded message that basically said 'hey, if you don't get this done today, I will call you non-stop and I will physically show up in your office until you do.'
An hour later she called me back. I'm not her favorite person now, but I don't care. She got the referrals done by the next day.

So folks, that's how Brodie got his appointments moved from two months away to this Monday instead. Sometimes to get it done you just have to be a pushy bitch.

Learning to expect the unexpected

I think pregnant women do a lot of daydreaming.  I know I did.  I wondered over what my new baby would look like.  Would he look like me or his daddy? What color would his eyes and his hair be?  I imagined his personality. Would he be funny and smart? Easygoing or high strung?  I have to confess, during my early pregnancy, I had really hoped for a girl. I pictured a little princess who I would adorn in pink tutus and ribbons and take to ballet class.  But when I found out the baby would be a boy, I wasn't too disappointed.  My husband and son had really hoped for another boy and they were very excited.

So what happens when you discover something that throws a kink into all of your baby plans and changes all of those daydreams?

It started for me one day at work when I was about 21 weeks pregnant.  I had been feeling a little sicker than normal all morning, when I began to feel contractions.  I had some pre-term labor in my first pregnancy, so I was really worried about it and I left work early to go get checked out.  My doctor was also worried and put me on bed rest while ordering a bunch of tests. One of those test was for my regular 20 week obstetric ultrasound.

 I went and had the ultrasound done and as far as I knew everything had gone just fine. At my next doctor's appointment, I even asked the doctor if the baby had looked healthy in the ultrasound.  "He looks good" the doctor told me, but he said he was still worried about the contractions and he wanted me to go see a perinatologist (a specialist in high risk pregnancies) down in Phoenix. Phoenix is three hours away from where we live, so my husband and I decided to take our son with us, stay at my mom's house down there for a few days, and make a little mini-vacation out of it.

A week later, down in Phoenix, my husband and I walked hand in hand into the perinatologist's office.  The medical tech came and got us from the waiting room and walked us into a dark ultrasound room with large monitors on the wall.  Surprised, I asked "oh you need to do an ultrasound of my cervix?".  "Well actually I need to do a full ultrasound of the baby." the tech told us.  I thought it was a little weird because I had just had a full ultrasound only a week ago.  But I figured that maybe the perinatologist was really detailed and wanted his own ultrasound done for his records.

The tech was taking forever.  I watched the clock and she spent over an hour scanning my belly.  At one point, she kept poking and pushing at one particular spot on my belly with the scanner for more than 15 minutes.  She even had me move into different positions.  "What are you trying to look at?" I asked her.  "Oh, I'm trying to get a better picture of the baby's right hand.", she said,  "he has tucked in behind his head and I can't get a good look at it."  I started to feel a slow sense of dread. Why was she putting so much time and effort into this ultrasound?  Didn't they already have one in their records? 

The tech finally stopped scanning my belly and told me she needed to do a vaginal ultrasound.  She left the room for a moment so I could undress from the waist down.  When she left, I turned to my husband and told him "I think something is wrong with the baby.".  He shook his head and gave me a look of exasperated disbelief. "No, of course not. Our doctor would have said something about it already."  He must be right, I thought, we would have heard something about it by now.  I am just being paranoid.

The tech came back in and started with the vaginal ultrasound. As many women out there know, vaginal ultrasounds are not comfortable.  They push a scanner that is shaped like a very large rod up into your most private spot.  This is what the tech was doing to me when the door to the room flew open and a strange man came rushing in.  Startled and embarrassed, as all of my junk was hanging out and facing the door, I jumped up in alarm.  The man quickly introduced himself as the perinatiologist and told me to lay back down and relax.

"Me and several of the other doctors were in the other room watching the ultrasound on our monitors." he says "And we are seeing some problems with the baby."  Let me just say that this is not something you want to hear come out of a doctor's mouth.  My heart dropped and I was filled with something like terror at what he would say next. I reached over to my husband and gripped his hand, squeezing it so hard my knuckles turned white. I asked the perinatologist "can I put my clothes back on and sit up before we talk about this?"  "No," he told me, "We still need to finish the ultrasound so go ahead and lay back while we talk." 

 He started to pull up fuzzy black and white pictures of my baby one by one, describing the limb deformities that they had seen.  First the baby's hand, then his right femur, then both of his feet.   Every time he pulled up a new picture to talk about a different problem, I would think 'oh God, there's more?'. There should be some sort of divine natural limit to how many things are wrong with a baby. Maybe one or two things, but that's it. That's all a parent or a child should ever have to face.

My husband was pale and his eyes were numb.  His face looked like stone.  I started sobbing, crying so hard I was almost hysterical. I managed to squeak out that my father had "lobster-claw" syndrome in a high pitched broken voice . In contrast, the perinatologist seemed almost excited to be diagnosing a fetus with such a rare condition as ectrodactyly. He talked and talked about it, asking us endless questions about my family's medical history, while we just sat there in stunned silence. Then he asked us if we had any questions for him, but at that point I couldn't even think or speak anymore. All I could do was cry.  "I'm sorry to have to be the one to give you this news. That you had to find this out from a stranger." he said before he left the room.  Yeah mister, me too.

After the perinatologist left, I  got dressed slowly, my sobs ringing out in the empty room. My husband stood in front of the monitors, looking up at all of those still little pictures of the baby. The gray light shined on his face and his expression was unreadable. We slowly drove back to my mom's house, the car unnaturally quiet. "I just want to go home." my husband told me as we pulled into the driveway and I agreed. So we packed our things right away and drove the three hour trip back home in a hurry, completely shell-shocked.

That is how I first heard the news that my baby would be severely physically handicapped. Out of the blue, half naked on a cold ultrasound table, a hundred miles away from home, and from a complete stranger.

Friends and family asked me "why didn't your doctor say something to you about it before you saw the perinatologist?"  I have to admit that for a few weeks I was furious with my OB doctor. A little warning would have been nice. At my next appointment with him, he asked me "how did the visit with the perinatologist go?"  "It was a fucking nightmare. That's how it went." I told him. Then I explained to him what the perinatologist had said about the baby's limb deformities. He looked totally surprised as he began flipping through his chart, scanning the notes in a rush. He acted just as shocked by the news as we were. I'm sorry, but I don't believe that he didn't know about it before then.  He is a sharp guy and a very thorough experienced doctor.  He must have wrote about it in his notes or said something to the perinatologist. Otherwise, how would the perinatologist have even known to look for it in the first place?

However, I can understand why he didn't say something about it to us first. As a nurse, I know that, in general, the medical community loathes giving bad news. We see the cat scan that says our patient is filled with cancer before the doctor does. We know that a patient is too sick to leave the hospital alive before that patient's family does. But it's not our job to say anything. The doctor or the specialist will have to tell them, because we definitely don't want to be the one to deliver that message. It's someone elses job, not ours  Maybe my doctor just didn't have the heart to tell us about our baby. It was probably easier not to say anything and let the perinatologist do it.

Well, that's it.  That's the story about how we learned to expect the unexpected. Coping with it, however, was a completely different matter.  Something  I will have to tell about in a different post.

What is Ectrodactyly? An overview.

When I first found out that my baby would be born with ectrodactyly, I was devastated and shocked.  But mostly, I was scared and and uncertain of the future.  A lot of questions wandered around my head.  How bad would my sons hands and feet turn out?  what would they look like?  How did he get this condition?  What would my son's physical limitations be?  What would the doctors be able to do for him? 

Well the way I dealt with this was to do as much research as possible.  Throughout my life, whenever I have faced a major ordeal, I have responded by learning as much as I could about the problem.  'Knowdledge is power' as they say, so I like to face my problems by being well informed.

It turns out that ectrodactyly is rare and kind of hard to find a lot of information on.  If you google "ectrodactyly", you are likely to see a lot of links to medical freak-show type websites, Bree Walker, and complicated scientific research papers on genetics. But I did the best I could and this is what information I could get from different resources.

Ectrodactyly is a Greek word that literally means abortion of a finger.  A different website states that ectrodactyly translates to "monstrous fingers".  The medical definition of ectrodactyly is the congenital loss of fingers or toes.  A more common (and recognizable) nick name for ectrodactyly is "lobster-claw syndrome", as hands or feet affected often take the shape of a claw.  Ectrodactyly has also been known as split-hand or split-foot malformation.  Another more specific scientific term for the condition are the initials 'EEC', which stands for ectrodactyly, ectodermal dysplasia, and facial cleft syndrome, naming three features associated with the condition.

The most typical presentation of ectrodactyly occurs in the hands and/or feet.  It involves the absence of the three middle digits, leaving a large cleft down the middle.  This gives the hand and/or foot a claw-like appearance.  



My son's right hand, which only has two fingers


Ectrodactyly can also occur in other variations.  Sometimes, only one or a couple of digits can be missing, with or without the cleft.  In other cases, hands and/or feet can actually have extra digits or webbing.  (By the way, the presence of an extra digit is known as syndactyly.)


 In the past, doctors have typically tried to repair and close the cleft in attempt to give the hand and/or foot a more normal appearance and a narrower shape.  Now, doctors are realizing that such surgeries might be unnecessary and can actually cause lost of functionality and movement.

For example, my son has two fingers, a thumb and a pinky.  The orthopedic surgeon told us that if they closed the cleft in the middle of his hand, he would lose the opposing thumb.  He would not be able to pick things up or grip things with that hand anymore.  Hand prosthetics are also unnecessary and would only get in the way.  We were told that children are very resilient and learn how to adapt, often times turning their "disability" into amazing abilities :-).

Both of my son's feet are affected by ectrodacyly.  He only has one toe on each foot and his feet are positioned upside down and backwards. Ectrodactyly can cause deformities in other bones, as well.  This is what happened with my baby, as his right femur (thigh bone) is misshapen too.  It is dramatically curved up, causing his knee to be rotated to the side.  The doctor told us that both of his feet will need to be amputated when he is six months old, so that he will be able to learn how to walk on prosthetics by the time he turns one.  At this point, we are not sure how his right femur will be treated. We are waiting for the specialist to tell us if it can be repaired surgically or if that whole leg will just need to be amputated.

my sons legs.  Notice how his right thigh bone is curved up.






Two boys with ectodermal dysplasia

Earlier, I mentioned that Ectrodactyly is sometimes called EEC syndrome for ectrodactyly, ectodermal dysplasia, and facial cleft syndrome.


 Ectodermal dysplasia is the absence of sweat glands causing a variety of skin and pigmentation problems.


 



Cleft palate (a split in the upper part of the lip and mouth) can also be associated with this condition.


A small percentage of people with ectrodactyly also have some level of hearing loss.  Interestingly, I have been partially deaf since birth.  All of my extremities are normal and deafness is my only symptom of ectrodactyly. My father has ectrodactyly and I didn't realize I had inherited it from him until my son was born with it.  I had always thought my hearing loss was a separate random condition.    But apparently, I do have it and I have a 50% chance of giving it to my offspring. 

This brings us to how ectrodactyly happens. It is a very rare condition and only 1 in a 100,000 children are born with it. It is usually a genetically inherited condition, as in one parent passes it down to their child.  However, ectrodactyly has occasionally been known to occur spontaneously even when neither parent has it. Most commonly though, it runs through the entire family and can be traced back for several generations.  It affects families of all ethnicity from all over world, including Asia, the UK, south America, Africa and the US.  Even some animals can have ectrodactyly.

 Well, ectrodactyly does run in my family.  My father has it and  several of his brothers and sisters (my aunts and uncles) have it, as well.  But neither their father or mother (my grandparents) have it and we are not sure of which generation started it.  I am the only child of my father and mother, his first wife. My only symptom of ectrodactyly is the deafness.  My father has ten other children with his second wife and the majority of them are affected to varying degrees.  Most of my half-brothers have it in their feet and several of my half-siblings have hearing loss. One of my brothers was actually affected in the same way as my son and he also had to have both of his legs amputated.

So there you have it. A little information on ectrodacyly and how my little miracle is affected by it. 






  



And it came to pass.....

So, let me take some time to explain how our little miracle came to pass.

As I talked about in my first post, I have a beautiful five year son named Bentley.  My pregnancy with Bentley was a surprise, not an accident, but not exactly planned either.  Brian and I had started living together and within a few months, I fell pregnant without even trying.  It was a pretty easy pregnancy except for some preterm labor in the last couple of months.  Still, Bentley was born full-term and perfectly healthy, with all ten fingers and toes.

Brian and I loved being parents.  We enjoyed our little family and Bentley was the best thing that had ever happen to us.  Soon, we started thinking about adding a new addition.  We wanted Bentley to have a little brother or a sister who wasn't too far apart in age.  We decided to have another child and we began trying for one when Bentley was about a year old.

I figured that I would easily get pregnant again, but it was not the case.  Month after month passed of trying and nothing was happening.  I would feel nauseous one morning or be a day late with my period and my hopes would go up. But there was always just one line on that pregnancy test, time and time again.

Years went by.  A doctor told me I had endrometriosis and that was why I couldn't get pregnant.  So I underwent surgery to try and clear out some of the endrometriosis lesions in the hopes it would help. Afterwards,  I still couldn't get pregnant.  A few years later, I had the same surgery again and this time the doctor flushed out my fallopian tubes.  Even then, nothing. 

 It felt like all these other women around me kept getting pregnant without any extra effort and having these beautiful babies.  Yet, there I was, desperate and always with just that one negative line on another stupid pee stick.   I couldn't afford fertility treatments, but I figured if I just kept trying, I would have to get pregnant some day.  It happened once, it had to happen again, right?

Finally, after five years of effort and infertility, it finally happened.  There were two whole lines on that pregnancy test!  I can't even begin to describe our excitement and joy.  We started talking about names and making lists of things we would need to prepare for the new baby.  We wandered around the baby aisles at walmart, checking out all of the cute little baby clothes and toys. 

Then a few days later, I was getting ready for bed and there it was.  I had started bleeding.  Not a little spotting, but full on bleeding.  I frantically called the doctor, scared for the worse.  Sure enough, the next day at the doctors, an ultrasound showed an empty uterus and a blood test revealed that my pregnancy hormones were too low. As I had feared, I had had a miscarriage.

What can I say, it absolutely crushed me.  I was beyond depressed and I couldn't stop crying.  I would be in the middle of a grocery store or having a conversation with a complete stranger and just break into tears.  A month later, I got pregnant again and had another miscarriage within a few weeks.  It was a very dark time for me.  I gave up for awhile and stopped trying to get pregnant.  I would get to a point where I would feel better about things, but then I would see something that would remind me of the babies that I had lost and the hurt would come flooding back.  Even to this day, sometimes I think about it and still tear up, even now after I finally have my baby.

Almost a whole year passed and I was done.  I figured I needed to focus on the family and child I already had.  I toyed with the idea of adoption, but it seemed too complicated and expensive.  I didn't want to actively try for a pregnancy anymore, I just couldn't deal with the heartache.

Then one day, out of the blue, I started praying.  I'm not a very religious person, but I found myself suddenly talking to God.  I prayed the whole day.  I begged God for a baby.  I said to God "OK I'm willing to give up if another child is just not the plan for us.  But if it is, please dear God, give me another baby now because I just can't take this anymore and I am at the end of this rope."

The next day, on a whim, I grabbed another pregnancy test and it came back positive.  After another eight weeks of tense waiting, an ultrasound showed us what we had prayed and hoped for, a beautiful loud heartbeat.  Day after day went with no tell-tell bleeding.  Then I hit that golden twelve week mark where we all knew this pregnancy was here to stay and we were finally going to have that new baby.  We were getting the addition we needed to make our family feel whole.

Through faith and prayer, our little miracle had finally come to pass.

Who am I?

This is my very first post, so it's time to introduce myself.  Hello, my name is Tiffany.  I am a thirty year old woman who lives in Arizona with my husband Brian and my two sons.  I have two full time jobs, but only one job that pays. :-) Besides being a mom, I work as a med/surg nurse in a large hospital.  I've been a nurse there for three years and before that I was a nurse's aide for a very long time. 

My husband and I met 8 years ago and were married 3 years ago.  Our first child, a boy named Bentley, is almost six years old and just started kindergarten.  Bentley was a surprise, but he was an absolute joy and a blessing.  He is perfect in every way and was the best thing that could have ever happen to us.

Well, so far I sound pretty boring, right? Just another mom out there doing everyday things. So why am I writing this blog?

This blog is about our own little family miracle.  That miracle is our new little one-month old baby named Brodie.  Why is Brodie a miracle?  Well, Brodie only has two fingers on his right hand. But more than that, both of his feet and his right leg are severely malformed.  When I was only 23 weeks pregnant with him, we were given the news that Brodie would have to have a double leg amputation before his first birthday.

 Did I do drugs during my pregnancy?  Thanks for asking but No, my new baby boy has been diagnosed with a rare condition called Ectrodactyly.  Ectrodactyly is a hereditary genetic condition also known by the nickname of "lobster-claw" syndrome.  This condition causes limb deformities, most commonly missing fingers or toes. 

Why would I want to blog about this?  Well, when I first found out about my baby's condition I was devastated, scared, and anxious.  My first reaction was to scour the web for information.  I found lots of technical and medical information, a few support groups, and a lot of charity groups for children with limb differences and amputations, but still there was a void.  I wanted to know what it be like, what it would feel like, to mother a child with limb differences and physical handicaps.

This is when I found a blog that really helped me.  The blog follows the mom of a little boy who has a limb difference, a missing left hand.  I read the whole thing, from the first to the last post, and I really related to her and her experiences.  It helped me begin to accept my child's condition and see his future more optimistically.

That is the purpose of this blog. I want to be there for other parents whose children have physical handicaps of whatever nature. I want to put my own experiences with this out there and tell of all of the ups and downs that come with this journey so that other people who feel the need can share and relate.

Thank you for reading this and spending some time with me in my world.  Up next, a post about how my little miracle came to pass.