Arthrogryposis - My Son's Journey with Amyoplasia

Date Night

2011-07-23T10:43:00.000-05:00

I believe it's our obligation as parents to not hinder our children's growth and potential, with an extra special child, this obligation becomes more paramount. Doing for your child, instead of allowing for themselves further disables them.

Throughout the 6th Annual AMCSI Conference in Kansas City, there was a reoccurring comment that I heard from the adults (or young adults). I heard it in the panel discussion where everyone had the opportunity to ask adults with Arthrogryposis how they did it, then how they figured it out. Then in the Amyoplasia session I facilitated, again the reoccurring comment was, "Don't do everything for the kids; let them figure it out." I have always tried to make sure, I'm more patient with my son because although it is soooo much easier and faster for me to do it for him, it's much more important for him, for his future for him to do it by himself. If he asks for help, I of course help, or guide him towards figuring it out.

So on my date with my son we had steak for dinner then we took a stroll downtown Springfield. We walked around some of the square, most of the time he and I were hand in hand. And at certain moments Little Louie would decide he wanted me to hold both his hands, one hand wasn't good enough. Talk about warm my heart! When it was time to walk to the movie theater, he wanted to see Cars 2 (again) we headed back. He didn't complain about the long walk but a couple of times he'd say, "I feel like I'm getting skinnier." "Are you getting tired, do you need to rest?" I would ask. "No mommy, I'm just getting skinnier." We got to Hollywood Theater and as we approached the steps he said to me, "Mommy can you please let go of my hand?" You see he needed me to let go for him to be able to walk up those steps alone.

When you hear the same message over and over again, you can’t ignore what’s being said. This is what my son will constantly need from me. He will constantly need me to let go so that he can do it alone. So I shall.

He Can Do It All...

2010-03-05T14:04:00.002-06:00

This is my little guy’s second year of attending the school district’s preschool program. I’ve been amazed at his progress. He’s extremely independent. He puts away his own backpack like all the other kids. He uses his “writing bird” when it’s time to write. His drawings are phenomenal and just yesterday we discovered he could get his OWN water out of the water fountain. Now I’m trying really hard to ignore all the icky germs that he was exposed to because OH DEAR LORD HE DID IT HIMSELF!!!!

I remember when he was first born being so upset because I was afraid he would not get to experience what other kids normally do. So this blog really is for those parents who are new to Arthrogryposis (or any other special needs)… I know some of you are struggling because your child may not walk yet or may not be able to crawl; and some of you may be pregnant carrying a child with special needs. Please do not be discouraged. I know I was when my son was born. I assumed he would not be able to do some of the many things we all take for granted. Well here I am five years later and goodness was I wrong. Not only is he doing the aforementioned, he can also walk up steps that measure 9” high, he even hides under the bed to keep from getting in trouble. For those of you who don’t really know my son, yes his uppers are affected.

Give them the independence to learn on their own, to figure things out and you will be awed. It’s easy to do for our children, because to our thinking they can’t. But here’s what I’ve learned: THEY CAN. We as parents just need to be strong enough to allow them to learn on their own and struggle to adapt. And if you allow that, you’ll be amazed at what your extra special child will teach you, and you’ll see for yourself that there are no limits to what can be accomplished.

Lil Louie's First Day of School Revisited...

2009-12-04T08:39:00.000-06:00

I wrote this in 2007 on my little guy's first day of preschool.
Many of my fellow Arthrogryposis parents are sending their little ones to their first day of school and thought I'd share this one again. Love you and miss you all...

November 19, 2007

Firsts are so hard on me. I don't know why. I hate it when that 1st birthday comes around. I hate it when that first step comes. I hate that first word. I hate the first tantrum. I hate the first crawl. That first accident. I hate that first time they dress themselves. I hate that first crush. I hate that first girlfriend or that first boyfriend. Or that first best friend. That first fall. That first time polishing of nails. That first trip to the doctor. To the hospital. That first road trip. That first visit to Texas or Colorado to visit the grandparents. I hate it all. I hate it for what it stands for. I hate it for what it represents. Because each first is that step away from me. Away from home. Away from our family. Each first is a step towards their independence. I get to take many firsts four times over. Good LORD what was I thinking?!?! Today my son took a major first! As he took his steps towards his first day of school. I saw him taking those first very symbolic steps towards his independence. Except I didn't hate it so much. I hated it because I was scared for him. I was scared he'd be made fun of. I was scared he would fall. I was scared people would look and stare and wonder and ridicule. I was scared the kids would torment and taunt him. I was scared that he wouldn't adjust. I was scared of so many things for him. But I didn't crumble and cave to the desire to grab my son in my arms and run to my car. I didn't run off with him, away from the potential negativity, from everything I feared because more than anything for him, my son, I want him to be independent. I need him to take those many million firsts in life. Because I need him to be independent, and loved and respected, and cherished but more importantly I need him to be looked at no differently than any of the other child in that school or anywhere else. If I prohibit those many firsts he must take, I know and acknowledge that I would prohibit what I want for him more than anything in the world. I know my son is different. I know the world regardless of what they say to me, see my son as different and wonder how he will adapt in this world. But I also know that any person who takes the time to know him will see how very wonderful, unique and amazing my son is. So today on your first day my lil guy, I fought back the tears, and held my head up high, because you were taking a most important first today, walking your first steps towards your preschool class.

What if...

2009-10-14T09:25:00.003-05:00

Many parents prior to embarking on becoming a parent, or trying to conceive have a tendency of asking themselves, “What if something goes wrong?” Question if the timing is perfect for their first child or their next addition.

I recall being at a local amusement park, in the nursing center, nursing my Lily Rose talking to another mother there. She was nursing her number two and I told her I was nursing my fourth. As I continued to rock my Lily, the mother said wow, I’d love to have more kids but my husband and I are just aren’t sure. We have two healthy kids. Isn’t that enough? What if the next time something goes wrong? She then asked me if I was scared about that.

I remember being a bit taken back by her question. Paused. Then replied: I have the what if. My son is the “what if.” And the love for him is indescribable.

And although that was a good answer, I wish I could have expounded then like I can now. My “what if” is turning 5 soon. I remember when he was born: the silence; the calm; how serene I felt looking at him. Thinking there’s nothing wrong with my baby he’s beautiful just like all my other children. Come what may, this baby is mine to love and boy did I/ do I love him. Please don’t misunderstand me, the enormity of his condition hit me hard and was absolutely devastating, but in the first moments of holding him, I knew to the core that things were just as they should be. I remember calling friends and family, loved ones and just simply saying, “There’s something wrong with the baby. We don’t know what we’re dealing with, but please pray.” Everyone was so strong for us, because they knew that’s what we needed. Even though I know when they weren’t in our presence, they shed their tears, whispered their fears and prayed with all they had.

But now as I approach Little Louie’s 5th birthday, I reflect on my “what if” and here’s what I say to anyone pondering and wondering... please remember that being a parent is not a trivial task. It takes great responsibility if one is to be a good parent. We as parents will always have issues that must be addressed with our children. From fevers, to emotional problems, to cognitive delays, to physical issues, just to name a few. Some of us already have the "what if" child, some of us were blessed with more than just one. But in all actuality regardless of whether or not a first (or second or third, etc…) child is born with Arthrogryposis, or some other "condition" those are merely the known and seen issues. As a child grows, we parents will continue to be faced with much more complex issues. So don't be afraid of having more children, or trying for your first as long as you are prepared to handle the responsibility of parenting that child, because really they are truly all perfect, regardless of the diagnosis. All four of my children are absolutely beautiful.

Happy 5th Birthday my son.

--- r.g. morales

Internal Struggle

2009-02-13T21:20:00.002-06:00

Life has been an absolute roller coaster ride. The Arthrogryposis Convention is quickly approaching. We're still trying to figure out exactly how we're going to afford to get there this year. But how can the President not get there. The economy is taking a toll on everything and everyone, but somehow we will get there this summer.

Lil Louie has been doing really well despite his continued falls. The other day he hit his chin so hard, that today is day 5 with that nasty bruise. His personality is changing into this tough but amazingly SWEET little guy. I'm so proud of him. He hugs me his way. And tells me he loves me "this much" by spreading me fingers, since he is unable to spread his own. Not a day goes by when I don't catch him performing a little miracle and that perpetual lump in my throat grows ever larger. I carried my son to full term unaware of his condition. He was born at 8 lbs 13 ozs. A very healthy baby especially for a mom of 5' height but especially for being a child with Arthrogryposis. It wasn't until I joined www.amcsupport.org that I learned that typically children with Arthrogryposis are born not just premature but also weighing very little. I wonder how I would have endured the strain of knowing of my son's condition before giving birth to him. My pregnancy was very stressful, and have always been thankful that I was unaware. My son when born was chubby, seemingly healthy except for a few anomalies. And I ponder if my ignorance of his condition saved him.

There are many different forms of Arthrogryposis. Some are lethal. Some are not. Some could be. I didn't know until recently that the split of those that survive are 50/50. One of the hardest parts of being involved with Arthrogryposis Multiplex Congenita Support, Inc is definitely knowing about the babies that bless us with their presence for a short time. On January 30, 2009 we lost a special baby. I don't feel comfortable saying her name, since I didn't ask the parents' permission. But she was here with her parents for a blink of an eye. I'm baffled how a child who I have never met before can bring me to tears. How even though I have never met the parents, or met their baby, I mourn with them. Hurt with them.

I just don't understand how some make it and some don't. I am so sorry that their baby didn't. I'm sorry for all the ones who don't. And learning of those who opt to terminate their pregnancy absolutely shatters my heart. I don't quite understand why the ones that do survive, or live, must endure so much. I've been struggling with that one for a while now. And I'm still not at peace with it at all. I know ultimately I must let go of this struggle. I'm just not there yet.

Shriner's Appointment 20 Jan 2009

2009-01-21T20:03:00.001-06:00

My two guys accompanied by Lily and Frank went to lil Louie's appointment at the Shriner's Hospital. Overall it was good news. Lil Louie has maintained the bend on his right elbow. And somehow the ROM on the left has increased by 10 degrees. The doctor and his therapists seems really pleased with how our little guy is doing. But of course we have homework assignments: we need work on improving finger strength, hand strength, and do wrist stretches to help improve range of motion there.

Defying the Odds

2009-01-04T14:49:00.002-06:00

With our Lily turning 2 soon, we decided to go ahead and remove the safety gate that leads downstairs. I'm not sure who I am more concerned for. Lily seems to be handling the steps just fine, just as Lil Louie. I see him standing at the top of the steps looking down, and leans forward ever so slightly to toss a toy downstairs. I guess he's figured out that it's easier to throw it down than try to attempt to carry it down. It works and he's doing the steps pretty well. He even pushes off of them to go down faster.

Just to clarify he isn't walking up and down the steps. He hasn't figured that one out yet. And to be quite candid I'm not ready for that just yet. But he's going down on his seat and worms his way up on his stomach. I try really hard to offer encouragement. And I try really hard to stay seated when I see him struggling to figure something out. But I watch. And I let him learn.

Some people ask us how he is doing all the things that he does. And one big plus is that Louie is here at home to work with him. But the other thing is that we allow Lil Louie to figure things out himself. I want him to be independent as an adult, so I have to allow him to be independent as a child.

If you are lucky enough to have a special child try to allow them to live as independently as possible. My son is constantly amazing me by defying the odds because we do.

Riding a tricycle

2008-12-14T23:14:00.002-06:00

I have always refused to allow people to set limitations on our Little Louie. From the day he was born I have had two goals for him: I want him to play the piano, and I want him to be a better soccer player than his daddy. Both pretty lofty goals for anyone, but especially more so for him. Well I took off of work on Tuesday, Dec 9 to help get focused on what really matters.

And of course my son reminded me of what matters most.

I accompanied my husband, to pick up Little Louie from preschool. We began to tour the school a bit, but first made a stop in the gym. His OT (occupational therapist) and his PT (physical therapist) saw that we were there and showed us the video of our son riding a tricycle. I couldn't believe my eyes! The little boy who's knees supposedly don't bend very well, was bending them to be able to ride that tricycle.

This I had to see in person!!!! So we, daddy, Lil Louie and I go into the gym to try to see it for ourselves. He needed some encouragement. So I get on one bike and he gets on another. He pulls it over to the gym's bleachers, leans on them to climb on top the bike. And off he goes!!!!! NO WAY!!!!!!!! WAY TO GO LOUIE!

Thank you for reminding me what matters most. Thank you for reminding me to concentrate on all the good in my life. And thank you Lord for not just blessing me with four beautiful children, but for chosing me good enough to parent one of your very special children.

He's Jumping!

2008-11-16T19:47:00.003-06:00

Today I walked in the door from some meetings at church and the kids are excited as usual. And I see my son jumping. I stand there speechless, question whether or not my eyes are truly seeing what I believe they are seeing, look at his feet as he jumps again and oh my goodness there is almost two inches between the floor and his foot. He continues to run down the hall, despite it scaring me and now he jumps up and down.

I have always said that I will not further handicap my son. And that's the advice I typically give to anyone - do NOT further handicap your child. And I really truly mean that, but at times, especially like today, it is so difficult to follow through. I understand if I look at the big picture, it's best for him to be a typical 4 year old, with 4 year old adventures and 4 year old races. So I watch him. Pray and let him be a 4 year old boy.

So today he's jumping. And I THANK THE LORD for choosing us to receive one of HIS extra special children.

Lil Louie had his IEP this past week. He is still 1.5 years away from starting Kinder but I am so glad to see that he is attending a school that cherishes him as much as we do. We discuss his limitations and how tired he gets and whether or not he will need extra quiet time once he starts Kinder. And in my head I think absolutely no way because my son will have to learn to adapt. He will have to work harder to accomplish the same functions that we all take for granted, but he has to adapt. Am I wrong for that? I understand that he has a physical disability. I get that better than anyone else. But it's just that a physical disability. I don't mean that Arthrogryposis is a trivial condition, it is not. But it's definitely not dire.

His intelligence astounds me. He takes my breath away on so many levels and shatters my heart and heals it a million times over, but I can't allow him to use his inability to use his limbs like others do, as an excuse.

It would be easier for me to coddle him. To shelter him. But my expectations for him cannot be any different than any of my other children. Therefore, I will continue to parent him with love and patience but definitely with more strength that I thought possible.

Two Years Later

2008-11-10T19:31:00.002-06:00

It's hard to believe that so much time has gone by without posting a blog. Things have been rather hectic, and I've been doing my best to manage the chaos as best as humanly possible.

For those of you who don't know this, I became President of Arthrogryposis Multiplex Cogenita Support, Inc. But I'm still a wife. Still a very active member of my church.
Still a mom. Still work my full time job. Still me.

Since my last blog there have now been three conventions for the Arthrogryposis Group. Year 2 was in Dallas, TX. Year 3 was in Dublin, Ohio. Year 4 will be in Philadelphia. It's amazing to have been part of this organization for so many years. The growth of an idea that started out as Ani's dream is mind boggling. From year one in Chicago, to year 3 in Dublin was about 400, next year in Philadelphia I expect that number to double. Our chair of this even MaryBeth would probably want me to bite my tongue. :)

The artist I spoke of in my last post, is now a dear friend, and Lily Rose's godmother.

Lil Louie, who is now 4, has defied the odds, and started walking at 2.5. Learning to balance was a labor of love, one that we continue to work on. But he's walking. Thank you Lord.

All of the kids really are doing great. This is my oldest' last year before high school... Sigh... time flies.... My Thalia just started Kinder.

Anyway, I'm reading The Shack by Wm. Paul Young. If you are a Christian, which I hope you are, read this book. If you're not a Chrisitan, read this book. This book will help you on your journey to not just know God, but to love God, and hopefully learn to learn and love His children as he does and how you do or should.

AMCSupport First Convention

2006-08-07T10:41:00.000-05:00

This post will hopefully enlighten all of you as to why I have not been posting lately...

My family and I spent this past weekend in Chicago at our AMCSupport.Org’s 1st Annual Convention.

As you guys know my son has AMC (Arthrogryposis Multiplex Congenita): Amyoplasia. I am a member of AMCSupport.Org and co-chaired (with Michelle) our very first convention. Not only was it AMCSupport’s convention but this was the very first time anything has ever been organized for those with AMC.

So this past weekend I got to spend time with all types of people with AMC. There were infants with AMC up to a man that was 50 years old. We got to have our children play and interact with each other. The adult AMCers got to meet other AMCers – there was even one person from the Netherlands! The toddlers got to play with other AMC toddlers. And us parents had a chance to learn from each other. Meet other children like our own children. See how that child has overcome a specific obstacle.

I met so many people. There was this awesome 14-year-old boy who was so quiet and all I could think of, while I looked at him is, wow is this how my son will look like when he’s 14. He was wheel chair bound and had very little use of his arm but he wasn’t limited by much else. He used hooks to help him reach things. And when we had our open forum season and one of the adult AMCers told us parents how important it is for the children to live a normal, healthy life which included going out with friends and driving if possible. This 14-year-old looked intently at his mother hoping she’ll relent. I just laughed because I’m sure when my son is that age I’ll have to have someone prod me along as well.

There was also a wonderful woman named Theresa. She is a wonderful artist, with limited use of her arms. She paints the most beautiful paintings, with the paintbrush in her mouth. She had a workshop with all the children of AMC. And she had all of the AMCers present paint on an easel. I know we'll do something with the painting to help raise money but we will also eventually auction off the painting itself on EBAY. Can I tell you how much I want that painting!?!?!

I cannot even tell you how often I was in near tears. Louie’s condition is so rare. That I have never before seen others that even look like him, and to have a group AMCers with his condition all in one city was absolutely wonderful, and inspiring.

After the convention was over I couldn’t help but feel absolutely proud of myself. Absolutely there were hiccups but the convention was wonderful. Everyone was wonderful. I didn’t do it alone but I absolutely helped bring this together. And I will probably for the rest of my life, be so very proud of myself for doing this. For sacrificing rest, time, energy, money, sweat, tears to bring the entire AMC family together.

So here’s my challenge to you. Is there something you have done that has invoked this type of feeling about yourself? Are you content with living your life only to help yourself and your loved ones (if that)? Don’t be content anymore. Do something that will for the rest of your life make an impact on this world. Make the world a little better. If you’re just working to provide for your family, albeit that’s wonderful, but it’s not enough.

Do something. Change someone’s life for the better. Make an improvement. Make an impact. This convention was absolutely that for me. I will forever know that I helped bring together almost 100 people this past weekend to share, to love, to meet, to hug and to cry. And I am so very proud of myself. I want you to be proud of yourselves too! This is a wonderful feeling that I wish for all of you.

Current and Future Events....

2006-05-04T07:33:00.000-05:00

First of all I just have to brag about our Izzy. She won 1st place in a Literature Competition the theme was: I wonder why... and here's a submission:

I Wonder Why My Brother is Disabled?

by (mi nina preciosa)

I wonder why he looks like that? Why couldn't he move?

I wonder why his arms are pasted to his side? I'll always wonder why.

Why can't he walk or crawl?

I wonder why his legs are up? Won't they go down?

I wonder why God made him this way.

But even if he only rolls, and barely moves his arms I'll always love my little brother, Louie Morales IV.

On Monday, she with a group of kids from her school competited in an acedemic competition against 5-8th graders from schools from the surrounding school districts. Her group took First place.

On Tuesday afternoon, she competited in the spelling bee. The first round was a cake walk; her word was juice. The second round seemed to be more difficult as 15 students before her misspelled guarantee. Everyone in the gym yelled and chilled when our Izzy spelled the word correctly. The 3rd round was cinnamon. 4th round - mispronounce with only 10 kids left. Then it was rhythm. Followed by lieutenant unfortunately only one person got this right and she was deemed the 1st place winner; the play off for 2nd and 3rd place continue. All 3 missed subsequent and rendevoux but the 2nd place winner is the only one to spell neutral correctly. So Izzy and another little girl continued to compete for 3rd place. The both missed achemic; Izzy gets ancestor correctly but the litle girl misspells her word. Izzy wins 3rd place!!!!!
It was so exciting, my stomach was in knots with her. She did so well. I can't tell you all how proud of her we are.

A story I had to share

2006-03-29T16:42:00.000-06:00

One of the members of our support group submitted the following. It was so sad and beautiful that I had to share with you all. This is one of those stories that we question the validity, but this is so true it absolutely breaks my heart.

In honor of our son's sixth birthday... I’m sharing our adoption story with those who are considering adopting as a thank you to all who have helped in our process. If you are interested in photos and
more details on our adoption you can go to my blog at www.spaces.msn.com/members/thelowrys . In December 2004 my husband and I were celebrating Christmas and the 1st birthday of our firstborn son. We had a wonderful life and were so blessed to be surrounded by family and friends. Then the Asian tsunami hit and really brought home to us how truly blessed we were. My husband was so touched by what he saw on the news that he mentioned possibly adopting one of the tsunami orphans. Well I had always had adoption in my heart and jumped on this chance to pursue it, knowing that my husband was now on the same page. We quickly found out that most international countries do not allow foreign adoptions and the chances of adopting a child orphaned by the tsunami were very slim. Still we felt that this was the right time to adopt and continued
researching. Although we can’t explain exactly why, somehow our hearts led us to Ukrainian adoption. We also decided that a boy around age 4 or 5 with a mild disability would be right for our family. Then we saw online a post about a boy who was about to turn 5 and needed a home urgently (more on why later). The post said that he has hip dysplasia. We researched hip dysplasia and found out that we have a Shriners hospital here in Tampa that would treat him for free and
we said lets go for it. A few weeks later when we received a full medical report we were upset to find out that he also had clubfoot and arthrogryposis of his lower half. Doing research online we realized that with these additional diagnoses the amount of surgeries and time in casts would be much larger than if he just had hip dysplasia. We really struggled with whether we could handle
this, the impact on our family, and finally came to the decision that yes, we can do this. Lots of paperwork, lots of waiting, etc and 7 months after we originally decided to adopt our son we were on our way to Ukraine. Unfortunately, Ukraine had just changed the court process and was in a time of transition when we traveled. When we originally decided to adopt the time in country was one trip of around 2.5 weeks. We ended up taking two trips and spending 5 weeks in country. In all honesty we would not have decided to adopt if we knew in advance that it would take 5 weeks in Ukraine. I guess it falls under the category of “things happen for a reason”. Meeting our son was one of the most amazing times of our life. Yes there is a huge language barrier but you find ways to communicate. We knew right away that he was smart and so strong. His upper body is not affected and is incredibly strong. He is almost 100% independent by using his arms to get around. We were very happy that he seemed healthy and well behaved. We’ve been home four months now and will be celebrating my son’s sixth birthday tomorrow. To say that I am an incredibly proud Mother is an understatement. He has gone through so much in his life and still has an amazing personality and strength. Everywhere we go people fall in love with him. People will tell us that we are amazing or angels for adopting him. He is the one who is amazing. Despite all the obstacles in his life he
continues to thrive. Medically we still are not sure what his story will be. Lots of tests, lots of specialists, and still no firm diagnosis. They think it may be a syndrome but not sure which one. We may pursue genetic testing but are waiting until things slow down a bit. We had a really big scare when the doctors said they think he may have spina bifida. The reason it was scary was because to us surgery on the spinal cord or brain surgery seems more serious and dangerous than surgery on bones and muscles. However, we received the good news that the MRI showed no spinal defects or other major issues. We still believe that he has nerve damage but not sure if that was a birth defect or gradual over the years of non-treatment of his deformities. Our first surgery is scheduled for mid-April to attempt correction of the club-foot. We’re not sure of the long-term plan but we know he is so strong that he will find a way to make it with whatever physical obstacles remain. For those considering adoption I have to say that at least in these first few months the behavior and
developmental issues have been more difficult than the physical ones. He lived in the orphanage from birth and often lived in groups of children that were mentally disabled or in groups where the children were much younger than him (due to his physical disability). When we went to get him he was 5.5 years old and living with a group of two year olds. As you can imagine his development is
delayed on many levels. His behavior was not extreme but was difficult in the beginning as he was adjusting to his new life, new family, and new rules. Time and lots of therapy will tell if he will be able to overcome his early deprivations. It will be very interesting to see where he is in a few years. Ok, back to why he urgently needed a home when he was about to turn 5. This section is disturbing so skip over it if you don’t want to know. I feel it’s important to share this part because it is part of our son’s story and the other children not adopted deserve a voice. In almost all former communist bloc countries orphans are treated the same way. (Orphans include children not truly orphaned
but abandoned or abused by their parents). The young orphans live in a “baby home” until age 4. This home includes both young children considered healthy and those considered disabled either physically or mentally. When its time to transfer to an older children’s orphanage at age 5, if the children are considered mentally disabled they are sent to an “institution”. Also at age 5 physically disabled children are evaluated and those that cannot walk independently are also sent to the same institutions. (By the way most of these physically disabled children receive no therapy, surgery, or equipment like walkers, which would help them get to the place where they could walk independently) Our son was one month away from turning five when he would have been sent to an institution when we decided to adopt him. These institutions are basically he** on earth and most children die after a few years there. They have little food, medical care, clothes, blankets, and all other basic life necessities. Those that are mobile are left to wander aimlessly all day. Those who do not have 100% bladder control and those that are considered too dangerous to allow to walk, are forced to lie in bed all day. And by forced I mean that many are tied to the bed so that they cannot get up if they try. They are often naked or naked from the waist down and left to lie in their own urine and feces all day. To say that it makes me sad and mad that this is how these children are treated (and how my son would have been treated) is an understatement. I want to vomit thinking about it. One boy who was only a month older than our son and grew up in the same baby orphanage as him was not lucky enough to find a family. He was maybe a little more disabled than our son but could still scoot around on his butt and walk with assistance; he did not have behavioral problems and could feed himself. He was transferred last spring when he turned five to the local institution. Just recently someone went to visit him and found him naked and tied to the bed. He has lost all the words he could speak and can no longer support himself to walk with assistance. It’s just a matter of time before he dies.

Scars

2006-03-27T23:01:00.000-06:00

As I look at his elbow, it’s still hard to believe that it can now bend. It’s so interesting that now the foreign to me is what is the norm for all else. I hold his little arm afraid that somehow I will damage his arm further or somehow be the cause of some unforeseen damage The sight of his scar from his stitching causes me unease. But it’s not the sight of the scar that causes me unrest but it’s the pain that I will forever associate with that scar. I’ll always remember how I felt placing my son in the nurse's arms to be taken back to have his surgery. I’ll remember the cries I heard when he realized mommy and daddy were not right there. And I’ll remember how I felt when he came to that realization.

Then I remind myself to whom I am referring. My son is resilient and strong and how utterly silly of me to believe that somehow I can cause him further pain, than that which he has had to endure just to get his elbow to bend. How absolutely unfair it is to blame myself for what my son has to go through.

His scars should be a reminder of his unwavering personality. And his scars will be a reminder not of the pain of his surgery but of his triumphs.

My Louies Are Home

2006-03-24T22:45:00.000-06:00

Louie III and Louie IV took the trip to the Shriner's alone this time. I really didn't feel I could get away from work, but it turned out to be a blessing in disguise. I got pretty sick and would have not been able to go into that hospital with my little guy. But his daddy was there with him, when his cast was removed. They stayed there for 2 days. Daddy got to see Lil Louie's excitement when he realized that "finally" that cast was coming off. He learned many extremely important stretches. Lil Louie was fitted for what they call a sling but looks more like a splint to me. He has to constantly wear his sling, except during therapy and bath time. The sling was molded to 80 degrees. It's so amazing to see his arm bent. I'm still not quite used to it. He does have a big incision it's about 3 1/2 inches right now. But it's a pretty clean cut; once it heals a little more we'll
be able to begin scar massage to help minimize the length of his scar. Where most people would have wrinkled elbows, Lil Louie has a cut there that enabled him to bend his elbow. We're always asked when his next surgery will be so I'm sure some of you have the same question so I'll answer it here: we don't know. We don't know if the next step is muscle transfer to this arm or if it'll be a tendon release on his right arm. We usually don't know what are next step is going to be until right before we take it. He does go back in 4 weeks. But so far he's doing really well. He's not quite sure what to do, as he's had to do without bending his elbows for the first 17 months of his life, but we're sure once he realizes the additional utilization he has gained he'll incorporate that into his world.

AMCSupport.Org

2006-03-17T21:09:00.001-06:00

Little Louie's condition is called Arthrogryposis Congenita Multiplex. His specific diagnosis is Amyoplasia.

When Louie was first born no one could tell us what was wrong with our son, what caused what he had. In a time that was meant to be a joyful experience was darkened not because our son was born with an unknown muscular condition but because we had no answers, so many questions but no where to go to for help. It wasn't until he was 2 weeks old when we went to the Children's Hospital in St. Louis where he was diagnosed. Although we felt so much better just knowing what we were dealing with, we still had no where to turn to for help, for advise, for someone who knew what we were feeling, thinking, going through. I remember doing an on-line search and found a beautiful little girl named Abby who was born with the same condition. Her parents had a website dedicated to her , her condition, her progress, with pictures. For the first time I was able to see that we, including our little guy were not alone. There was a website that I was given that was known to be for those with Arthrogryposis. I tried to access any type of information I could, to no avail. So I gave up and stopped searching on line. In Oct of 2005, as Louie's 1st birthday approached, I did another search and found amcsupport.org.
It's an online support group of families and friends or people with Arthrogryposis, founded by the mother of little Abby. Currently there are 200+ members and I remember when I originally joined there were not even 100 members. We come together discuss our children, vent our frustrations, listen to others who face or have faced what we have. We offer unconditional support to anyone who needs it. I can't tell you how wonderful I feel being part of such a wonderful support group. Knowing that this is here for other new parents, hearing them echo my same concerns and questions and frustrations. Not only have I met other parents, but I've also met some of the most amazing adults with Arthrogryposis. Some of the most inspiring stories have come from these adults who like my Little Louie have overcome and endured so much.
In August of 2006 we will have our first ever convention. This is not just AMCSupport's first convention but this the first known convention for those affected with Arthrogryposis Multiplex Congenita. I invite you all to go to www.amcsupport.org. We welcome anyone who has family or friends with Arthrogryposis. We're also asking for donations to help pay for some of the expenses of this convention. I have the honor and privledge to be one of the people who are organizing this momentus occcasion, and I just ask, if you can to go to the website and donate if you can. Without them I wouldn't know where I'd be today.

Post Surgery

2006-03-06T13:07:00.000-06:00

Wow! It's hard to believe that so much time has past since Louie's surgery (Feb. 23). The surgery lasted almost 2 hours. He had a posterior tendon release on his left elbow. Dr. Goldfarb was able to look at his tricep and note that there was muscle, just not very good muscle. He said if he had to rate it (on a scale fro 0-10; 10-highest) he would rate Louie's tricep a 4. So the good news is he has muscle for us to try to develop and work with; bad news there's not much there. But in knowledge there's power right! After his surgery his elbow was bent to 30 degrees. We went back to the Shriner's one week later so they could hopefully bend his elbow more. He went under again, and his elbow was and is now bent to 80 degrees. He's in a (blue) cast. And he's still rolling around the floor. He's scooting laying on his back more, but this isn't slowing him down. We will hve to go again in 2 1/2 weeks for the removal of the cast and stay overnight so that he can receive extensive therapy. This past weekend we worked on working that arm. I would put cheerios on the tips of his fingers and move his arm and hand up to his mouth. He loved it. Also for the first time in his life, Louie was able to put his fingers in his mouth. Who would have ever thought that such a simple task would bring us so much joy.

Thanks for keeping him and us in your prayers.

Gait Trainer

2006-02-17T07:57:00.000-06:00

We received a letter from our insurance company stating Louie's Gait Trainer was approved. I'm not sure if we'll have a copay or a deductible to meet but it's coming. And I just got off the phone with the company ordering it and it was shipped to them on 2/14 it might arrive today 2/17. I can't tell you how happy that makes us. We can now work on getting our little guy to walk.

Please remember that his next surgery is Thursday, Feb. 23. I won't know what time his surgery will be until Feb 22. But please remember to keep us all in your prayers.

Of course, we'll keep you all posted.

Surgery approaches

2006-02-07T09:20:00.000-06:00

Little Louie's surgery is 16 days away.
As long as he stays healthy the surgery is a go. We're still working on getting everything in hand to submit the request for the Gait trainer. Maybe sometime this quarter it'll be done! And hopefully by next quarter we'll have it in house. He really does like to be as mobile as he can be.
After spending several days in a funk about my little guy this is what my system flushed out. I hope you enjoy. Or at least I hope this gives you a different perspective on life.

For Granted
By r. morales

Until the day you were born, many things I took for granted.

I assumed you would be able to wrap your arms around me for affection.
I assumed you would grab my finger with your tiny hands for strength.
I assumed you would bring your hands to your mouth for comfort.
I assumed you would touch me while I nursed you.
I assumed you would bring your hands to my face just to remind me you love me.
I assumed you’d lift your arms up when you wanted your mommy.
I assumed you would crawl around the house.
I assumed you would torment your big sisters by reaching up to yank on their hair.

Until the day you were born so many things for granted I did take.

When others stood so easily; You had to undergo surgery just to correct your tiny feet.
When others were learning to crawl; You had to learn to roll around the house without the use of your arms.
When others were standing on their own; You had to undergo constant therapy just to get your legs more functional.
When others were learning to grasp things with their hands; You had to figure out how do the same using only your feet and mouth.
When others were learning to walk; You had to undergo your second surgery just be able to bend one elbow.

But from the day of your birth, each seemingly effortless movement for granted I no longer took and as my heart breaks and heals over again I am blessed to see a miracle in you each day.

Family Update

2006-01-26T22:37:00.000-06:00

In case I have yet to brag to you about our oldest - her latest report card was Straight A's AGAIN. And she made the HONOR ROLL AGAIN. Isabella is working on her science project - she's decalcifying bones. It's not nearly as complicated as that sounds, but very interesting. Her science partner is Briana. Their grade for this project was 105 points!!!!!

Thalia is Thalia. It's 10:40 pm and she insists on staying up way past her bed time. But daddy just got home, so I'm sure he'll get her into bed. :-D She's just about mastered how to flip. She loves to do that, we just have to make sure she doesn't roll into Lil Louie or Keyhole. Her favorite food lately is corn dogs.

Little Louie is supposed to start his speech therapy soon. It should be next week. His favorite word is papa. He loves to eat. Well he loves to eat whatever is on our plate. He gives good night kisses, too.

OK it's past my bedtime so I'm off for now.

Next Surgery

2006-01-19T16:14:00.000-06:00

Okay this is my first attempt of stepping into the current century.
This is a picture of my Little guy with his grandpa. Little Louie is up for his next surgery on Feb. 23rd. He'll have the tendon released in his left elbow. The surgery is much more involved than his bilateral heel cord releases but he will HOPEFULLY gain a ton of ROM (Range of Motion) with this surgery. Remember to keep him in your prayers. And of course I'll keep everyone posted.

This week's milestone's:

Lil Louie, with daddy's help can now transition from his sitting position to laying down to be able to roll around the house. They began working on this Sat. Jan 14, 2006.
Today, Jan 20, 06 he took his first forward steps in his walker. He is really trying to be as mobile as he can.

We're trying to get him a Gait Trainer, which will help him learn how to walk. We submitted the paper work to insurance company about a week ago. Hopefully we'll hear something soon.