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Praise God, the Father of our Lord Jesus Christ! The Father is a merciful God, who always gives us comfort. He comforts us when we are in trouble (grieved or afflicted), so that we can share that same comfort with others in trouble (grieved or afflicted).  ~The Bible (2 Corinthians 1:3-4)

The following is one example of the love and support on the arthrogryposis multiplex congenita (AMC) support group. This is all posted under the Welcome to the Group forum. 

Subject: Hi from Baby Laelia

Our baby, Laelia (pronounced LAY-Lee-Uh) got diagnosed with Amyoplasia and Arthrogryposis. She is almost one month old and was born on October 3rd. We found this site weeks ago, but it took a while to be able to read or post anything without falling apart emotionally. Laelie wasn’t diagnosed until after she was born so this was a total suprise. Being my first baby, I didn’t know she wasn’t kicking enough. She has casts on her legs and soon will have them on her arms as well. We are also doing physical therapy at home which is killing us because she just cries and cries. (Any advice? Does this get better?)We’re having a nightmare with insurance and all that stuff too, but despite all of it, she is a beautiful little fighter. I had never heard of AMC so we’re still learning stuff everyday. We’re really thankful that this site exists. I’d love some advice on bonding with my baby since she doesn’t move her arms or legs.Thanks,
Alexis (Laelia’s mom) 

Congrats on your new baby girl! I know it’s not what you expected, but it does get easier. We had no idea what AMC was either until our Haley was born. It’s been a learning process, both medically and emotionally. Haley cried during all her therapy as well until she got a little older and now she enjoys parts of it, but still gets quite frustrated at times. Just treat your baby like you would if she didn’t have AMC……cuddle her all the time & talk to her lots. Don’t think that every time you sit down with your baby you have to be doing therapy/stretching her. She’ll amaze you every day with all she accomplishes. Please feel free to ask anything! Everyone here is very eager to help in any way they can. ~Suzanne

Bonnie cried and cried and cried at therapy at Shriners until she was almost 3. Not what you want to hear, but it is what it is. But she walks with her walker now! She didn’t just cry during therapy, she cried when we got to the parking garage! But now she smiles, loves it, shows her new skills, asks in her own way(she is nonverbal at this point)how to learn to do whatever is on her agenda, takes it home and works on her homework…. it is worth it.

I learned to distinguish between the ANNOYED cry and the REAL PAIN HURTS ME! cry. It has been worth it. It does get easier.

I want to see pictures! You can see pictures of Bonnie at myspace.com/beverlyhansetburch
You can see her feet at 2 weeks and now… she is something! She has come so far! I never thought she would get here even though I knew she would… it is sometimes hard to believe…

I am glad you found us. It is overwhelming. Emotions ebb and flow. That is normal.

Now, get us some pictures of your doll!

~Beverly

Hi Alexis!My name is Michelle and my daughter Zoe is a patient at Easter Seals here in Illinois (I think our PT knows you through someone – Kathy Monley). Anyways, I am glad you are here. It was overwhelming to deal with things when Zoe was first born (I didn’t know until she came out too), in fact some days I was obsessed and some I was so focused on just doing what I had to do for Zoe. From the minute she came out though she has been my biggest Joy and my true angel. Life is not always easy but so many things are sweeter just for having her around. Little things are no longer taken for granted. Your beautiful daughter will amaze you everyday.Good Luck with each coming day and if you need anything, to talk or whatever, please PM or call ( I passed my number on through Kathy).Lots of love and hugs to you, and most of all CONGRATULATIONS on your new baby GIRL!!!!!!!!!!!!!

Michelle

PS Crying gets better and no they are ususally not hurting her

Hi Alexis,
Welcome to the group. Congratulations on the birth of your beautiful daughter. There are such wonderful people here with all sorts of advice and support. Our son Nathan is 8 months now and has AMC/Amyoplasia in all 4 limbs. We too had not heard about Arthrogryposis until he was diagnosed (albeit in utero). Dido what Suzanne said, don’t feel like you need to be doing stretches with her every time you are holding her, you need pure and simple snuggle time as well. In fact it’s probably the most important thing right now. She needs it just as much as you do. It can be really hard to know how to snuggle them when they are so stiff, just do what feels right. I remember with Nathan his limbs were fixed in the extended position, so we would put his little arms over our shoulders and his legs would stick straight down. I would just hold onto his back and his little bum. He too cried a lot with physio, we weren’t sure if it was pain or just irritation. I had to nurse him the entire time he received treatments for the first 2 months. It was a little ackward but it worked. He now goes to therapy with a smile and loves his therapists. There are still moments when he cries but it’s usually when they are working on a sensitive area. Tummy time was a struggle as well, when Laelia is ready for tummy time try using an exercise ball, they really help because you can rock and bounce the ball. Ask any question you have, someone will have an answer. ~Jennifer

Welcome and congratulations on the birth of your dear baby! I’m new here also, but my Keera is not a newborn. I wish I’d found this board two years ago!Keera (nearly 2) didn’t cry for the whole first year of her life. She has Down Syndrome in addition to AMC, and it is typical for it to take a year for a baby with DS to learn to cry. All her limbs were frozen in an extended position at birth and she got leg casts (bilateral club feet) at one week along with arm splints. It took a while before I felt comfortable holding her, but after a few weeks, it felt as natural as holding any other baby. Keera spent the first month of her life in the NICU with tons of tubes and wires connected to her, so it probally took longer than most for me to become comfortable with the snuggling.I have been a real “pain-in-the-neck” to Keera’s therapists, because I have a “no crying” rule… they are simply not allowed to make her cry. Even before she started crying at one year of age, I’d stop the therapists when they were doing things that I could tell were hurting her. It doesn’t take long to figure out what is hurting and what is just annoying this little dears. (I don’t even allow much annoying.) Despite my “no cry” rule, nearly all of Keera’s joints have gained mobility: she can bring both arms to the top of her head when lying down, not quite as high with her right arm when sitting; she has great range of motion in her elbows, although her right elbow will not gain full range because of a misplacement of a bone (we just found this out in July) she can get her hand to her mouth; she has pretty good range of motion in her left knee; not much in her right knee; she can grasp with her left hand (we call it her curvy hand) and we can move right fingers to a grasp position, but she cannot do it herself yet; her right wrist is still not mobile, but she has learned to adapt and we continue to work on it.You are your baby’s number one advocate! Let your heart tell you what is the right thing, and don’t let anyone force or cajole you into something you are uncomfortable with.

It really does get easier with time. Snuggle, hug, and kiss your precious baby, because she is perfect just the way she is!

~Deborah

Hi Congratulations on the birth of Laelia! From an “Old timer” who didn’t know about AMC until Andrew was born, I know the feelings you are experiencing. I am so happy the boards exist for you…eight years ago there wasn’t much out there, and we felt like we were completely alone. I have to echo the other moms about just being Mommy. It is so important for you to just enjoy your daughter and for her to feel your love. Stretching is important, but Mommy time is MORE important! As for the crying, it does get better…I won’t tell yo it will stop, but as her joints relax a little ROM will not be as hard. (Yes, it is miserable and heartbreaking to listen to them cry…that is why the Mommy time is so important.)

Are you getting services through your state’s EI program? If not, Start the process. Michelle (Zoe’s Mom) will probably be your best resource as she is in IL as well!

As for insurance, one of the things I try and get parents to do is start a binder…go to Walmart and get the largest binder you can find, and a good three hole punch. Every time you talk to ANYBODY, start a new sheet with the time, date, who you talk to, what was said, etc. Tell them you are taking notes, and read back to them what you have. If you have to follow up with the same person, insurance co, hospital etc. You can start your conversation with: “On November 2, I spoke with your customer service rep, Mary Jones, at 9:23 AM. She told me……. . However, we are still dealing with this issue, and I would like to speak to a supervisor who can help me figure this out.” I also include bills etc. that we get, and if I am calling regarding that specific bill, if there is a blank back, that is where I put the notes. It sounds like a lot of work on top of everything else, but it will make your life less hectic in the long run. I have added divider tabs so I find Insurance claims, a section for the pediatrician, hospitals etc.

Welcome!
Michele

I’m so glad you found this group! My wonderful husband found it for us while I was busy falling apart after Coleman was born. He was also quite a surprise to us. I had an uneventful pregnancy, morning sickness, weight gain, etc… He was also very active so we never thought anything was wrong. So when he popped out ( and I do mean POPPED!, those small, narrow shoulders come out pretty fast!) we were shocked, as was my OB and the nurses. They whisked him away from the delivery room. I never even got to hold him. Finally after nearly 5 hours and umpteen million tests, they brought him to me. I broke down and cried for what felt like forever. My whole pregnancy flashed through my mind. What had I done to this little boy? There was no family history on either side of anything remotely like this, so I must have been the factor. I began to feel better after I undressed him and really got to look at him and hold him over the couple of days we were in the hospital. After getting home and reading everything I could find on the internet, I really started to count my blessings because there are so many extreme cases some in which the babies don’t even survive.Coleman has arthrogryposis in his upper extremeties only (shoulders, elbows wrists and hands. He was diagnosed before he even left the hospital. Within a week of his birth (June 4, 2007) he saw a neurologist, a geneticist, and an orthopedic surgeon. He had an MRI when he was 7 weeks old and an EMG when he was 3 months. His MRI was clear. His EMG showed good muscle conductivity in both upper and lower arms. He has his biceps, triceps, and deltoids (they are little but they are there none the less). His shoulders are internally rotated (mildly) and his elbows are fixed with little tiny dimples on the underside of his arms. His wrists and hands have had more severe flexion in the past but have been opening up of late. His index finger is tucked under his thumb on his right hand but his thumb is tucked under his index finger on his left. His right hand and arm are considerably more able than his left. Coleman goes back to Shriner’s on Dec 3rd to see the orthopedic surgeon again and also meet with a hand surgeon. We don’t know what’s in store for us but we are hopeful! I am an early intervention believer. It is overwhelming enough to deal with this unexpected condition. I have found it so much more comforting to be able to have information to help process it.God has blessed our family with a special little boy and I feel honored that he has entrusted me to care for Coleman. You must be pretty special people for God to give you such a special child too. We will keep you and your family in our prayers as you begin your journey.PS-Feel free to PM me. I will be glad to help you through this any way I can.Amy (Coleman’s Mommy)

Welcome to the group, Alexis! My name is Sarita and my youngest son, Caton (1 3/4 years), has amc with amyoplasia effecting his arms. Like Laelia, we didn’t know about Caton’s condition until after he was born. He wasn’t diagnosed until he was three months old. Still, he has always been our gift and joy – even when I was balling my eyes out and learning to accept his challenges. While I would take Caton’s challenges away from him if I could, I wouldn’t trade Caton for the world.

As for bonding, do you do things like skin to skin with him or lay down on the couch with him resting his head just above your heart? What about massage therapy? I know that doing these things with Caton allowed the two of us to really bond, and it helped me just as much as it calmed him. (Allowing him to sleep on my chest when I was on the couch allowed me to take naps, read, and watch TV while we bonded.) Now, I’ve a total “mamma’s boy” on my hands. It also made it so that when we first officially started attending therapy, he would allow the therapists to work with him so long as he was on my lap. (He was admittedly small since he was a premie.) I’m fairly convinced that massage therapy is almost as useful as pt. It helps babies relax and loosens up stiffened parts.

I’m sorry about the difficulties you are having with the insurance companies. Once you get it sorted out, it will be worth it. In the meantime, we are all here for you. The other mothers that have already written all have excellent suggestions. Feel free to PM me if you need to. ~Sarita

Hi Alexis,I’m so happy to see you posting, I think we all understand how those first few weeks are, it does get easier. My son Joey has amypolasia and we didn’t know until he was born either, and I do ultrasounds for a living Joey will be 4 next week and It would be difficult for me to describe how far he has come. Leaps and Bounds, he started with his legs twisted literally in the shape of a pretzel and he now walks with a walker. He didn’t move his arms for months when he was a baby and now he can do pretty much whatever he wants with those arms. In fact I was just watching him sneak some Halloween candy from the table, which is a good little reach for him, he got it so I let him get away with it Laelia will get stronger everday and her abilities will amaze you. As far as therapy is concerned, yep that was hard, Joey cried alot with therapy when he was a baby, but it must be done. He rarely cries anymore, some days he is tighter than others, it seems like if he is going through a growth spurt he tightens up and then his ankle strecthes hurt, but he loves his PT, she has been with him since he was 6 weeks old and they are the best of buddies.Remember, we’re right here if you need us.
Mel

Hello and welcome to the group. I too, did not know that anything was wrong until Connor was born…he has arthrogryposis affecting his uppers and lowers. I was flooded with so many emmotions it was like being on my own little roller coaster. Connor too would cry through therapy and they would send us home after about fifteen minutes of his crying…which only conditioned him to cry….and they’d stop. I used SoonerStart (early intervention birth-three) and still use them. I also, about a year ago, found Summit Pedatrics Therapy and we LOVE them!!!! Connor has just amazed us with all that he has accomplished. I had no problems bonding with Connor and he was able to nurse just fine (no mouth/jaw involvement). It is very awkward learning to hold them with their casts and splints but you soon learn. Just cuddle and love her like you would had she not had anything wrong with her. You will get worn from all the endless doctor’s appt’s., PT; OT; speech (if you have it) etc…but it will become a way of life and become “normal” for you and her. It does get better and you diffently learn to celebrate EACH accomplishment. Everyone here giggles when I say this but I am very serious…I WAS SO EXCITED WHEN CONNOR WAS ABLE TO PICK HIS NOSE!!!!!!! When he was born his arms were stuck in extension and there was no movement. We were able to gain good passive in the left and fair in the right then he had elbow releases and tricept to bicep muscle transfers and now he can feed himself, pick his nose, throw a ball, etc. These kid’s they learn to do things their own little way, and that is ok! Our bodies are so adaptive and compensate so well….this being the two bladed knife….you are SO glad that they can compensate and do things, but as they get older the compensating henders them from learning more correct ways to do things…we are going through this now with Connor. He uses so much of his back and surrounding muscles when he is trying to reach versus using his transfered tricepts and shoulders, but this too shall pass. If you need any advice or just to vent I am here, just ask and I will get you my number. You are not alone and everyone here is so understanding and have been where you are! Much love and prayers to you and your family!!!
Amy

When we do Coleman’s PT at home (3-4x a day), we make little games up and sing little 1 liner songs. Like when we do the finger and wrist stretches, we grunt like we’re pulling a bus and funny enough he starts to do it when we just grab his hands for any reason. When we do the shoulder stretches we pick an arm and point it in a direction and say “big planes this way, little planes that way” like he’s an ground airplane traffic controller. We also use the YMCA song to do those stretches. We sometimes sing “the hokey pokey” to do our hands and arms stretches. And when he has finished each section of the stretching, we put his hands together and “clap” and say “yeah!!!! good job Coleman”. He LOVES to clap his hands. His hands are closed but we bump wrists! We give high fives and low fives too. These are wonderful distractions and we have been doing them since he was about a month old. Believe it or not, just washing their hands and feet in the tub is PT as well. You can take advantage of the warm water to help her relax. As for holding and cuddling, we were so afraid of injuring Coleman at the beginning we treated him like a piece of glass. We only wore sleepers and shirts that buttoned up the front so we didn’t have to move his arms, we could just slide them on by his side and pull up over the shoulders. But I will tell you, my little guy is tough as nails. You would probably cringe at the way we get t-shirts on now (he just turned 5 mos old). I totally agree with the other moms, just hold her as if there is nothing wrong with her. I know it probably feels like the contractures are painful, but remember she’s been this way for quite some time so she is accustomed to the positions. If you think about trying to move say your legs into the splits position, how does that feel to your leg muscles, uncomfortable, but probably not painful. And the more you stretch the easier it gets, right? Pretty much the same thing. Touch builds neuron connectors that affect learning and emotions. You can NEVER hold her too much or touch her too often.Again, our prayers are with you and your family. ~Brandon and Amy

Thank you all so much for the warm wecome and advice. Laelia is nearly two months old now and there is such a big difference. I had to stop treating her like glass and overcome my fear of holding her. We are cuddling right now as I type this with one hand! The doctors did recommend having all four of her limbs in casts especially so we could begin something while it took weeks (!) for insurance to authorize OT and PT. She gets all four casts readjusted every Monday and becomes a different kind of awkward every week. I try to touch any other skin on her I can reach and I swaddle her so her casts don’t rub against her skin so I can pick her up more easily. We have had some set backs including a cast that slipped and bruised her and a doctor who announced that she would never walk (which ticked me off since she’s only seven weeks old so what do they know?!!), but I have only seen improvements. I love her so much. Even when I wrote that first post I don’t think I had really bonded with her yet. Now she’s my world and tough as nails. She is also getting to that age where they really start to get a personality. I love it! Anyway thanks again. ~Alexis

You are so right, what do the doctors know. There are several kiddo’s on here that were suggested to be aborted, ones that they said wouldn’t make it, and ones they said would never walk. As for my son, Connor, they told me that he wouldn’t walk until he was five years (now two & runs–in his own way–but never the less runs), they said he wouldn’t be able to throw a ball–he does! There will be things that she may do differently or may just not be able to do, but oh well, she will do other amazing things! Bond with her and love her! It get’s easier–I PROMISE!  ~Connor’s mom

Thank you so much for the update. I am so happy that everything is going well. She will continue to amaze you and bring such joy to your lives. ~Jennifer

As for an update on Laelie, her casts were redone yesterday. I dragged myself to the clinic since I had my own doctor’s appointment anyway and was already up. Bad idea. I’m an idiot. Made everything worse. But I did get to be there to comfort baby.. before almost passing out. Long story. Anyway…

More bad news: her right wrist/hand looks bad. Actually I haven’t seen any progress for the last few castings. It doesn’t even go out straight let alone bend upwards. The fingers are bent to the left and there are deep creases as well as dead skin and all that just to add to the effect. We made the tough choice to stop casting it. The casts are the most extreme way of dealing with those stubborn wrists, but medical science has its limits. It just really doesn’t look good and I hate this. I kinda wanted to do enough casting so she didn’t look like an arthrogryposis kid from a distance or when you walked by her on the street. She has an appointment next week to get her splint for it. The splint’s job is to keep things where they’re at (not letting them go back), and to stretch out those tendons in the fingers that get neglected when fixing a wrist.

Now don’t get me wrong, the wrist looks much improved. Just far from normal. Actually we don’t say “normal” anymore, the new term is “typical.” I guess by saying “not normal” I’ve been stigmatizing my daughter into later years of therapy. Oops.

Also we have our first surgery coming this Monday. Both little feet/ankles. They’re not even putting her to sleep, but just giving her a local since she’s a baby. They told me two scary things: 1. Yes, she will cry and be in pain. 2. No, parents aren’t allowed in the surgery room with her.

The casts don’t let up though. They will do the surgery and then cast the legs up. They warned me that the next time they remove the casts (three weeks later) there will be blood in them and not to worry.

They waste their breath. All I do is worry.

Once again I refuse to have the flu like a normal person! Last time it turned out to be Laelia (then known as Peanut) hiding in my uterus like a bad baby. Well this pseudo-flu just got worse and worse and finally turned out to be mastitis. Oh I made a link. Everybody be impressed now.

So Saturday night/Sunday morning I had a fever, chills, headache, nausea, body aches and a terrible lump in my breast that hurt like crazy and created puffy red lines. I had cold washcloths on my neck and forehead, but was under seven blankets. The body aches affected my hips so much that they couldn’t touch the bed so I had to lift and lower them all night. I got antibiotics yesterday and today I am finally feeling well enough to lift my head up. Yes it was that bad!

Baby didn’t understand why I cried when she breastfed. (I also threw up after pumping from the pain.) I went to the doctor yesterday and he told me to keep the breast empty but stop breastfeeding my child on it despite what I read online, and to use formula until we are certain the infection is gone. He said the infection can go to baby.

Charley took yesterday and today home from work taking care of me and baby–although I’m not sure which job was harder… or who cried for him more.  Lucky for us, one of Charley’s coworkers, Danielle, made us a bunch of meals that Charley just had to pop in the microwave and serve up. Plus my auntie Linda R. and cousin Dolly had sent some frozen meals in the mail (I didn’t even know you could do that) so we’re set!

When baby was handed to me, she would cuddle and breastfeed (on the good breast) for over an hour. I think she just missed me. I was just so afriad I would make her sick that she was put in her box or swing. Now that I know what it is, she sleeps next to me.

I look terrible, but I’m doing better. Baby also looks terrible, but that’s only because Charley still can’t figure out cleaning her face. Poor thing.

 I just had to post this. Charley fell asleep on the floor and put his head on the only soft thing down there.. which turned out to be Laelie’s box. So cute! 

 Big enough for two?

~ 

Also we found a use for Laelie’s old cast that fell off…

Merry Christmas!

Today was a day of improvements. To start off, Laelia had a bad casting week this last week. She missed her appointment Monday, got casts in a hurry on Tuesday, had the left leg cast slip down on Thursday, got a new leg cast Friday, had the left arm cast fall off on Saturday night, had the right arm cast slip on Sunday and then got them all redone today. Well they all got redone except for that left arm. Even though the cast fell off and the wrist had a chance to go back, the doc still decided to go ahead and do the splint for the left arm. It is so nice to see fingers again!

On our way back from casting, we saw that Laelie’s Christmas present had come early–a brand new swing! The old swing had reached its weight limit since Laelie’s casts are heavy, and the swing would groan to keep her moving. So we bought a new swing (one actually for toddlers) with our Target gift cards that friends and family had sent. It’s nice and strong and plugs in! She is asleep in it as I’m typing this!

But wait! There’s more! This was actually a two-in-one gift since we used the cardboard box the swing came in for Laelie’s new sleepy-box! She had outgrown her favorite box and refused to be set down on just a blanket. So new swing, new box and new splint all in one day!

Hello little bug! Are you my new friend?

Ah, it’s nice to wiggle again!

Showing off our new splint and old cast that fell off.