AMCSupport First Convention

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....

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

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

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

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

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

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

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

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

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

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.