MIRACLES ON MADISON STREET

LaRae's bedtime story

2011-03-12T04:34:00.000-08:00

"On the night you were born,

the moon smiled with such wonder

that the stars peeked in to see you

and tonight wind whispered,

"Life will never be the same. "

Because there had never been anyone like you....

ever in the world.

So enchanted with you where the wind and the rain

that they whispered the sound of your wonderful name.

It sailed through the farmland

high on the breeze...

Over the ocean...

And through the trees...

Until everyone heard it

and everyone knew

of the one and only ever you.

Not once had their being such eyes,

such a nose,

such silly, wiggly, wonderful toes.

When the polar bears heard,

they dance until dawn.

From faraway places,

the geese flew home.

The moon stayed up until

morning next day.

And none of the ladybugs flew away.

So whenever you doubt just how special you are

and you wonder who loves you, how much and how far,

listen for geese honking high in the sky.

(They're singing a song to remember you by.)

Or notice that bears asleep at the zoo.

(It's because they've been dancing all night for you!)

Or drift off to sleep to the sound of the wind.

(Listen closely... It's whispering your name again!)

If the moon stays up until morning one day,

or a ladybug lands and decides to stay,

or a little bird sits at your window awhile,

it's because they're all hoping to see you smile...

For never before in story or rhyme

(not even once upon a time)

has the world ever known a you, my friend,

and it never will, not ever again...

Heaven blew every trumpet

and played every horn

on the wonderful, marvelous

night you were born."

by Nancy Tillman www.nancytillman.com/books/night/

I got this book so LaRae could hear me read to her while I was in the Hospital. I feel this book was written especially for my miracles baby. I know it wasn't. This book expresses the way I feel about her the night she was born perfectly. So I thought I would share this cute story and of course a picture of her.

LaRae 5 minutes after being born.

LaRae's Shriner's Appointment with Dr. Kozin for Arthrogryposis/Amyoplasis

2011-03-03T12:57:00.000-08:00

LaRae

LaRae saw Dr. Kozin yesterday at Shriner’s Hospital for Children’s. It was a good appointment. He said she is doing very well. Her left arm is at 90 degrees and the right is at 0 to 35 degrees. It’s what I would call floppy. He had another word for it however, I don’t remember the terminology. He is not worry about her legs either he really didn’t have a good answer to why. Just that with Arthrogryposis growing does play a big roll with development, we will have to wait and see. I do know that her P/T will like that answer at all.

We don’t need to go back until my health is doing better. He did offer to take LaRae for a while if that would help us out. I’m not sure what Dr. Kozin would have said if I would have taken him up on his offer. It is really nice knowing that he cares that much about LaRae to even say that.

I think he was a little sad that LaRae didn’t crawl up into his lap this time. Since her spine surgery she not as quick to go near doctors I hope over time she gets over her fear. Good thing Dr. Kozin doesn’t have a white doctors’ coat then it would have been all over for him. At the end of the appointment he did coax her up into his lap with toys so I could get this picture.

LaRae and Dr. Kozin one of her favorite doctor's and mom's too. He's Great.

LaRae's medical update.

2011-02-24T07:53:00.000-08:00

LaRae saw her physical therapist Rachel last Thursday. This was LaRae's first appointment since her tether cord release in January. Rachel had noticed that the LaRae's left leg is getting worse. So we have decided that LaRae needs to have a second opinion due to how bad the left leg is at this time. We were told that LaRae could get worse before she got better but apparently this is a lot worse than what we should've expected it. Her physical therapist doesn't know if it's a joint problem in the hip or if it's a neurological problem with the brain so we definitely have to have it addressed sooner than later.

The good thing is LaRae has an appointment with Dr. Kozin of Wednesday, February 2 at Shriners. So I am hoping that we will be able to get in to see the lower extremity doctor and the neurosurgeon that is there so we can figure out why LaRae's legs are not improving.

I'm really hoping that this turns out to be nothing and that LaRae just needs more time to heal. My heart wants to believed one thing and I want to stay positive and not think the worst all the time. Then I see her legs I know that something is really wrong and that scares me because I don't want her to go through more surgeries. It really was the hardest thing I had to do was to allow the doctors to take her away and to entrust them with my little girl. To not know if she's going to be okay. Now I feel like we are right back where we started from and I have to trust them again.

So if you could say a prayer for my amazing little girl that she keeps her determination not to let anything get in her way from what she wants to do I would really appreciate.

LaRae on Valentine's Day

LaRae's Post-Op Appt with Dri Campbell

2011-02-08T13:00:00.000-08:00

LaRae finally made it her Post-Op appointment with Dr.Campbell. Quintin had the luxury of taken her to the appointment since I was in the hospital. It was the first time he did it all by himself and I have to say he did an excellent job.

Anyway, Dr.Campbell said "she is doing OK considering nothing has really changed and we won't see any improvements for 3 months if there is any improvements." We have to just wait and see what her body does. The only things that has us concern is she is falling more for no reason. He just said the same thing, it will take time he hopes. We can now start Physical Therapy again. This will tell us if things are improving or getting worse. I really hope the surgery fix the problem and the fluid in the spine goes away. I guess I am just going to have to be patient.

She goes back to Dr. Campbell in May and he mention another MRI in 3 months. I guess that's where we are with she tethered cord and Syrinx.

LaRae's Post-Op Appt Cancelled

2011-01-27T10:57:00.000-08:00

We had to cancelled LaRae's Post-Op appt because of the snow storm. It stinks because something isn't right with her incision and I am not sure what it is. I hope I can get her back down next week. I don' think that's going to happen because she already has an appt at Shriner's with Dr. Kozin.

I wish I had good news to tell everyone. She's not back to P/T yet. I am trying not worry about anything but, she is starting to fall more now for no reason. I thought I was just imaging things, however, it's been getting worse over the last week and she's tripping over nothing, she just falling for no reason. Now I have to keep track of how she falling, when, and how many times a day. This is her new status for now.

Climbing the Tallest Mountain

2011-01-21T10:00:00.000-08:00

I hope no one takes anything I write in this personally. This is something I need to do to move forward because these are very personal feelings for me. My hope is by expressing them; it will help me to become stronger for my family. LaRae’s medical problems are beginning to becoming too overwhelming, and I need to let them out. I think that I have finally come to my breaking point with all LaRae’s medical problems. Everyone keeps telling me to be positive, to pray, get her a blessing, to stop worry about it and it will all work, that she in good hands, doctors make it sound worse then what it is and the list goes on.

Now I find myself facing my own medical problems that have me so overwhelmed. I don’t know how I can possible handle both. It was bad enough trying to be strong enough for her do I have enough strength for the both of us. Does Heavenly Father really think I am this strong? I seem to find myself in tears all the time I just don’t know if I can. I find myself asking, why does my life have to be so hard. Why do I always seem to have to find some kind of amazing strength to pull myself threw these trials?

I know everyone is trying to help me. I really do appreciate all the word of encouragement and the prayers. I cannot help the way I feel inside. I am not feeling sorry for myself nothing, like that. I do not want to feel like this. I want to be strong for her, for my other kid and my husband; however, right now I feel like someone has thrown me under a train. I just want to climb the tallest mountain and scream from it as loud I could.

I have never climbed a mountain, but I can imagine that, with each step, my chest is burning. My legs feel like they cannot take another step. I cannot breathe because the air is too thin this high up. I feel exhausted from the climb, and when I think that I cannot take another step, I realize that I have made it to the top. As I look out over an incredible view, seeing for miles I marvel at what the Lord has made. It is simply breathtaking. And then, I am startled by a touch, as I open my eyes to find a 30-inch long, 19-pound little girl, with big blue eyes looking up at me, smiling and saying, "Mom?" That is when I realize that I never left the living room sofa.

I now realize that my strength comes from my sweet little blue eye girl named LaRae Sianna Lawley.

Thank you for reading my blog and allowing me to have moments of weakness.

Latest on LaRae Recovery at Home

2011-01-17T16:17:00.000-08:00

We are sure glad to have LaRae home. When I say she is amazing I mean it. To see her now two weeks after spinal surgery you would never even know she had it. She runs and plays like before the surgery.

She is still having the same problems with her legs We won't see any improvements for a while and we might still see her legs getting worse before they get better. We will have to wait and see what happens over the next 3 to 6 months and it could take up to a year.

She has her follow up appointment for Jan. 26, 2011 with Dr. Campbell her Neurosurgeon. She did see her Pediatrician last Wed. He did another c-diff test. LaRae lost 2lbs so she only weighs 20lbs again. She should gain it back in two to three weeks. LaRae is eating like a horse so I think she will gain it back with no problem.

She also has an appointment at Shriner's with Dr. Kozin to check out LaRae's arms on Feb 2.

We are so happy to have our Miracle Baby home and to hear her laughter in home is a wonderful blessing. I want to Thank everyone for their prayer and help during this hard time. We couldn't of done it without all of you. God Bless all of You.

LaRae is home

2011-01-10T10:38:00.001-08:00

Just to let everyone LaRae come home late last night. Quintin decided we would take our chances at home. She has lots of appts. to make sure she is OK. I will go into details at a later time.

On the downside I picked up a nasty stomach virus. Sunday night it started and I am dehydrating pretty fast again.

More Tests

2011-01-08T09:59:00.000-08:00

Dr. Campbell LaRae's nuero surgeon came and saw her this morning. He orders an abdominal X-Ray and culture her stool to see if her white cells are high. They are checking to see if she has c-diff or any other bad infection in the intestine.

Once again she isn't eating or drinking. I have no idea when we will get to go home and if they do let us go home it's also snowing here to add to the problem.

The missionaries are coming to give her a blessing. I didn't think we need another one but things aren't going good. We really need Heavenly Father to help her now. I am really worry about giving her a blessing. Her room mates father is a minster and I don't need to have a debate about my believes. We will see if they say anything. So prayer that Heavenly father will protect us and help us get threw this hard time. I am trying to stay strong. I can feel my strength is weakening, the tears come, I feel helpless and scare of the unknown.

On a happier note here are some really cute pictures of LaRae in her wagon that she is always in weather we are cuising the halways or just sitting in her room relaxing watching disney movies she.

LaRae painted a ceiling tile for DuPont

2011-01-07T20:24:00.000-08:00

LaRae painted a ceiling tile for the Hospital it will go in the hallway of the wing she was in 3E. We made a butterfly out of a foor print and flower out of her hand print. She wasn't really happy when I try getting her hand flat. LaRae helped paint the grass and the sun. We had a lot of fun doing it. Here is a finish tile.

Christmas at the Hospital

2011-01-07T20:02:00.000-08:00

It was like Christmas all over again. They had left over gifts from Christmas. LaRae got a stack of toys and books from the hospital.

I got a stick horse

All mine

Woo a really big Barbie

Look at all my loot.

LaRae is still not going home.

2011-01-07T19:52:00.000-08:00

LaRae was supposed to be discharge from the hospital tomorrow. Now it looks like we are staying longer. They had to give her an enema to get her to move her bowls. After the nurse did that she started to vomit. In less then an hour she had vomited 5 times and on top of that the enema started to work too. I felt so bad for her. Now everything is undecided to when LaRae can leave and what the doctors will do next. Please keep LaRae in your prayer.

LaRea's Hospital update

2011-01-06T15:36:00.000-08:00

LaRae is out of bed. She was scared at first. Rennie from Physical Therapy help get her out of bed. She still refused to walk. Rennie wasn't sure if she was scared since it was the first time she was out of bed since surgery or if the IV that is in her foot is causing the pain. Some else might be going on with her legs from the surgery. So now it's another wait in see processes until the doctors can take out the IV.

We thought she was going to be home by Thursday at the lastest. The doctors are now thinking maybe by Saturday. LaRae for some reason has stopped eating and drinking. Her bowls have slow down to much too. Her GI ordered a Sweat test. We will have those results sometime tomorrow. She is still is in a lot of pain. The doctors keep changing her pain medicine.

On a good not. She is really funny with the nurses and doctors. She doesn't say Hi to them, but when they leave the room she says bye to them. She has learn a new word "ouch". She shakes her head no every time they come near her. When the tech was taking off the tape from the Sweat test she was saying Thank you. The one nurse taught her how to stick out her tough. Now she stick out her tough at the doctors when they are leaving with the binkie in her mouth. They just laugh at her because they think she is so cute. LaRae has a red wagon while she is here. Because of the incision of her back it is stuff with pillows so I take her rides around the hallways and she spends a lot of time it in the room watching movies. She is going to be spoil before she leaves here.

I hope we get out of here soon. I miss my bed and sleep.

Pictures of LaRae before the Hospital and in her room.

2011-01-05T09:34:00.000-08:00

LaRae playing after breakfast surgery morning.

LaRae giving mommy some love Monday morning.

LaRae and Daddy in the ship at the Ronald McDonald on Monday morning before Surgery.

LaRae playing

LaRae giving her daddy some love.

LaRae Wednesday morning in her bed with all her toys from home.

LaRae has been move out of the PICU

2011-01-04T14:15:00.001-08:00

LaRae has been moved from the PICU to the regular floor. She should be home by Thursday or Friday. She still has to late flat and still for another 24 hours. Her pain is under controll. The only time we have problems with her staying still is when the doctors and nurses come in and do something to her.

We did have to move once already. We had a problem with the our first room. She was roomed with a teenage girl that was having family problems and it wasn't a good situtation. We had LaRae moved since they kept waking LaRae up. Now LaRae is roomed with a little girl that seems to be really sweet and this family is quiet.

Quintin has headed for home so my mom can go to work tomorrow.

LaRae's surgery is done

2011-01-04T07:47:00.000-08:00

Sorry it took so long to give anyone any news since yesterday. LaRae is doing good and surgery went fine. We had some problems when she hit the PACU and I haven't had time to update. The Doctors and nursers wanted her to sleep at least a 1 1/2 hour after surgery. Well let me tell you that didn't happen. She was raring to go 10 min after she got to the PACU. I will explain everything that has happen since my last posting at 11:40 am on1/3/2011.

At 12:45 Dr. Campbell came out aid she did well and the surgery went well. He explained that they release the cord. There is a but coming, he said he didn't not know for sure if it was tethered. He did released the cord any way hoping that the will help with the syrinx.

LaRae's out come is this.

1. LaRae will have to have MRI's every 6 months.

2. The nerve damage in her legs probably is permanent.

3. They might have to put a permanent shunt in the spine.

Even with know all of this we are stay positive she is Heavenly Father hands and he knows the out come of all of this. My family, friends and our faith will get us threw this.

When LaRae come out surgery they decided not to keep her on a vent. They thought she would sleep most of the anesthesia off that didn't happen she woke up 10 minutes after being in the PACU. She was supposed to go right to the PICU. Since there were no available beds yet we had to wait in the PACU. When LaRae woke up she woke up violently. It was not a good thing since she needs to lay flat and still. They had to move her to my lap and I had to keep her no higher the 30 degrees. I had to hold her chest down and Quintin had to keep her from kicking her legs this went on for 3 to 4 hours and I couldn't move at all or she would wake up.

At 5:30 pm a bed finally became available in the PICU. They changed her pain meds that seems to be working better. She is laying still and sleeping a lot. Things are better and she is doing better. She will be move to a regular room some time today 1/4/2011. That's all I have for now.

LaRae 20 hours after surgery

LaRae awake from the nurses messing with her not happy.

LaRae's Surgery Updare 11:40am

2011-01-03T09:23:00.001-08:00

Nurse came out and said LaRae is doing OK. They just made the incision. She will be in another 1 hour and 15 mins. The nurse also told us that they are taken her directly to the PICU unless her room isn't ready then she would have to stay in the PACU for a while. The nurse will come back out will one more time with an update. They did have to pre-treat her with steroids and a Neb treatment before surgery because of what happen after the MRI. They don't what to take a chance of aggravating the airway.

LaRae surgery news.

2011-01-03T08:43:00.000-08:00

She is in surgery. LaRae, Quintin and I got blessing last night. I know Heavenly Father is watching over her right now. I am still scared and worried. It is really hard not to be as much as I try not be. I have never seen Quintin worry before and he is even worry this time. She was cute after they gave her the vercet. She got all dopey and silly. I really thought I was going to cry when the surgical team carried her away she smiled and we told her we loved her and said good bye sweetie. Now we wait. Hopefully I can get the pictures to upload later.

Pre-Admission Testing

2010-12-30T10:09:00.000-08:00

After 5 hours at DuPont hospital we finally were able to go home. LaRae's first doctors appt. Was with GI, however, her GI doctor was home sick so we saw someone else that didn't have time to review the cart and it really was a waste of time. I have no answer to any of my questions.

Then we went to pre-admissions testing and of course there was a really sick kid that didn't have a mask on. I tried to get LaRae to wear one that wasn't happening, so I ask for LaRae to be moved into a room away from them. I think we are safe so far.

They went over everything. I did find out it looks like they might be removing a disc in her back also. If I understand correctly they have to remove the disc to get to the spinal cord. The are calling it an exploratory surgery with possible disc removal and tethered cord release. She will be in the PCAU for several hours. Then moved to the PICU for at least 24 hours under heavy sedation good chance she will be on a ventilator the whole time. She has to remain still for 24 hours. She will not wake up after surgery until the next morning. Both Quintin and I will be with her most of the time. I will stay with her overnight. He will stay at the Ronald McDonald House or with friends from Church parents house.

They did have to do blood work. They crossed and typed her blood to make sure they have blood on hand if they did it. She wasn't happy about that.

They did call us with a surgery time she needs to be at the hospital at 9:45 am Monday morning.

Please Keep LaRae in your prayers. We sure need them.

Complication after her MRI

2010-12-09T05:03:00.000-08:00

They decide for safety reasons they needed to intubate LaRae for the MRI. There was a risk she could aspirate. She had a cough before they did this and the chest tube aggravated the airway. When she came home she got really sick that night. She started to run a fever of 102.8, croop cough. congestion, and chest wheezing. I took her to the doctors the next day. We had to put her threw a chest X-ray to make sure nothing was in her chest because she was coughing up stuff. They checked her for strep that was negative. She had croop and bronchitis. I had to do neb treatments and give her steroids. Her doctor didn't what to put her antibiotics just yet because of her just getting over having c-diff. On Friday if she wasn't any better they would call in a scrip. Guess what....they had too. She wasn't any better. A week with no sleep. She's getting better still fussy.

I'm not sure if she didn't have a low IGA that she would of got this sick from being in the hospital for such a short time. This happens every time she steps into the hospitals with in 24 hours she is sick. I can only can come to one conclusion that her low IGA does affect her immune systems and why she gets so sick when she goes into a place that is full of germs.

They decide for safety reasons they needed to intubate LaRae for the MRI. There was a risk she could aspirate. She had a cough before they did this and the chest tube aggravated the airway. When she came home she got really sick that night. She started to run a fever of 102.8, croop cough. congestion, and chest wheezing. I took her to the doctors the next day. We had to put her threw a chest X-ray to make sure nothing was in her chest because she was coughing up stuff. They checked her for strep that was negative. She had croop and bronchitis. I had to do neb treatments and give her steroids. Her doctor didn't what to put her antibiotics just yet because of her just getting over having c-diff. On Friday if she wasn't any better they would call in a scrip. Guess what....they had too. She wasn't any better. A week with no sleep. She's getting better still fussy.

I'm not sure if she didn't have a low IGA that she would of got this sick from being in the hospital for such a short time. This happens every time she steps into the hospitals with in 24 hours she is sick. I can only can come to one conclusion that her low IGA does affect her immune systems and why she gets so sick when she goes into a place that is full of germs.

LaRae's MRI results

2010-12-09T04:28:00.000-08:00

As you know LaRae had her MRI on Nov 30th. We saw Dr. Campbell her nurosuergeon right after the MRI. We always see the PA first. He asked if we had any concerns or if there were any changes in LaRae. So I processed to tell him that LaRae is losing use of her left leg and foot. She can't bare weight on it to go to up steps, she drags the toe when she walks and it seems like she does know where to place it either almost like it's in outspace if that makes sense. I told him this has been going on for about 8 weeks now and the symptons are increasing getting worse over time. Just yesterday I had to help her go up the step to get into the house she could even bare enough weight on the left leg to get up at all.

Dr. Campbell came back in, which seem like an eternity, told me that the syrnix was worse. He had hoped it this was not the case. Said that since she is having symptons they will have to address it there is a but coming. The only problem is it's not going to be an easy fix. They can't drain the fluid because there is still not enough, however, they can't leave it untreated because it could cause nerve damage as the fluid collects. He also said that if the syrnix is getting larger it from another underlining problem. Here's the catch where her syrnix is it's from what is called a tethered cord. They ruled this out last Nov with the first MRI because they could see it. Nov that the fluid is collecting it's what they call a grey area where the cord might be tethered and it doesn't show on the MRI and they can only go by symptons.

It get complaicated for doctors what to do. So we had to out weigh the risk and our only option was to schedule Larae for Surgery to untethered the cord, hope that is the problem and that the fluid reabsobs into body. It was a very hard decsion for us to make. It was the saves out of all the options we had.

Her surgery is schedule for Jan 3, 2011 at DuPont Hospital for Children. She will be in the PCAU after surgery for a few hours, then in the PICU for 24 hours and then in a her own room hopefully for at least 3 days. We hope everything goes well. She has a low IGA which is part of her ummun system so ever time she goes in the hospital she comes out sick. So I worry about her being in over long period of time.

I am very nervous about this up coming surgrery. I am getting her a blessing. I have realized that I need to give this to my Heavenly Father and let him help me threw this. I need to be strong for her and my family. I haven't been able to do that at this point untill yesterday I had to underful sister from my church visit me. They brought us dinner and just coming and seeing me. They took time out their busy schedules to see what I needed I really thought at the sight of them I would lose it and break down and cry. I held it together. It let me know that that I can do this and it might feel like I am going threw this all alone and know close to me understands, however, I have lots of people that love me and are saying lots of prayer for my little girl and my family and that means so much. I could do this without them. Before they came I picked up my scriptures and searched for strength, comfort, hope, faith, miracles, endure and healthing of the sick. I found a scripture that touch me that I would like to share.

Psalms 18:2 The Lord is my rock, and my fortress, and my deliverer; my God, my strength, in Whom I trust; my buckler, and the horn of my salvation, and my high tower.

This scripture gave me peace like I haven't had in almost a week. He is what comforts me in my time of need. My faith is what gets me threw. I have seen him works miracles. I finally found peace with LaRae's new medical condition. My Heavenly Father is the only one that could of help me with this. I was so devasated from the news no one could help me. It feels good to be at peace with it. God Bless everyone for your prayers.

Please keeps LaRae in your prayer we have along road ahead of us. Keeping her health until Jan 3. will be hard. I am thinking about doing a public caring pages for her called amazing LaRae

LaRae's MRI

2010-11-30T06:44:00.000-08:00

LaRae is in now having her MRI done. I am waiting for it to be over. I am very nervous. They decided this time to put a tube in her throat to protect her airway. The risk of her aspirating is still too high. So recovery will be longer and she will go up in the surgical suite. I really hope this gives us the answers we are looking for. We will see Dr. Campbell right after the MRI at 1:00 pm. We won't have to wait long for some news. At least I didn't cry this time when they carried her away.

I am grateful to have wonderful friends and family, that are so willing to help me out with my three other kids. So, that I can be here and not worry about what is going on at home, and for that I am grateful.

My faith and love in my Savior is what helps me get threw days like today.

Sorry for no news!!!

2010-11-12T06:14:00.000-08:00

Things have be crazy in the Lawley house. One medical problem after another good news and bad for both LaRae and mom. Sorry to keep everyone in the dark, however when mom is sick nothing gets done and the blog is the last thing that is on the list. All the computer crashed too so we had to buy a new one. I happy to anounce that I am starting a family blog so at this point forward this blog will only be about LaRae's medical journey and anything to do with medical stuff I guess you could say. I will link both blogs at the top of each blog so it's easy to move between the two of them. The one other thing that will make life easier is I have new softwear to help with blogging so I don't have to type so much. So thanks so much for following LaRae's journey. Hope to post more soon.

She does have a MRI of her spine coming up on Nov. 30 that we are very wottied about. She is having problems with her left side of her spine from the middle of her back to her foot. They are worried that the syrnic his getting bigger. I am like always staying postive. When I look at her she gives no reason not to. She has such a spark in her eye. Until I know more......

Swallow test results unofficially

2010-08-25T03:21:00.000-07:00

LaRae unofficially passed her swallow study. It was comical watching the tech and doctor trying to get LaRae to eat barium cover food willing. She was not having any part of it. The test didn’t go as well as it could of. They needed her to cough on food while doing the test and that didn’t happen. They did find out that her air was being protect when she eats. That was main thing they need to know. After the test was over and they gave her cup back, she did have one of her coughing episodes. Their conclusion was that she drinks too quickly and it pools in the back of her throat it's because she can’t swallow fast enough to catch up with what her mouth is taken in. That causes her to cough. In a nutshell, she is delay in her eating habits like everything else and with time, she will catch up. LaRae just has poor table etiquette.

Now I need to get the official report from the GI doctor. LaRae should be clear for surgery I hope with in the week. We have to get the C-diff test out of the way hopefully this week and we should be good to go.

1K walk with Luca "Lazylegz" Patuelli

2010-08-12T17:06:00.000-07:00

Please take the 5 minutes to watch this inspirational video. Luca Patuelli has Arthrogryposis in his lower limbs. He did a 1K walk with no crutches or braces at the AMC Convention in Disney this year. It was amazing to watch. I'm proud to be able to share this with everyone who checks my blog. I hope my daughter has this much determination as the years goes on. I am so lucky to say that I have had the chance to met this amazing guy. He has a big heart and more will power then I have ever witness in anyone ever before. If he can do that then we have no excuses at all.

No Excuses, No Limits!

2010-08-12T06:19:00.001-07:00

AMC Convention Opening Slideshow from Ani Mahan on Vimeo.

Adrian met his dad's family the Allen's for the first time in 11 years.

2010-07-22T15:47:00.000-07:00

Adrian reconnected with his biological dad’s side of the family the Allen. He hasn’t seen them since he was 3 years-old. His father has past away since then. Adrian was excited to meet them and scared all at the same time. What Adrian didn’t realize is that the Allen clan is big. He met maybe half and I’m not sure if that’s even right. Adrian and I went to Philly for his Aunt Surprise 50^th birthday party on July 11. Adrian met his dad’s sister Bev, her husband, his dad’s brother Brian, Cousin Reggie, his two kids, and his sister Alex. In addition, a whole lot of Aunts, Uncles and cousins that I can’t even remember who they all where in this tiny house and yard. I didn’t know you could fit some many people in such a small yard but they did have lots of fun.

I wasn’t sure at first how this was going to affected him when they first found us on face book. We talk about this as a family and Adrian said he want to know them and wanted them to be apart of his life now. We felt that he was old enough to be able to handle it. We are trying to take it slow; however, Adrian doesn’t take anything slow he does everything a mile a minute. He wants to do all kinds of things with them. I have to slow him down all the time. I would love to have half his energy. I did take some great picture at the party. My baby is growing up. We had a great time at the party. Adrian was very happy to meet everyone.

Adrian - slideshows

LaRae's Biopies are in

2010-07-09T10:53:00.000-07:00

LaRae’s test results are in. Dr. Ramirez called today to tell us the results of the biopsies. She had good news and had some bad news I guess you could say. The small bowl had no inflammation so no food allergies were present. That was great news. We did not have such good luck with the large bowl. There is inflammation and small ulcerations maybe or bubbles in the larger bowl and rectum. It is hard to explain what you see on the pictures. The biopsies showed that she has inflammation and an infection. She has colitis and it could be ulcerative colitis their not sure at this time. They have to send a stool sample out to see what kind of infection she has after they collect the sample we will start her on flagyl a very strong antibiotic. They might have to change the antibiotic depending on what the test results are. She has to go for a swallow study now too.

Dr. Ramierz will not clear her for her elbow surgery in October at Shriner’s until all these test are completed. I really hope this does not interfere with LaRae being able to have her surgeries. I keep thinking, not another set back it seems like that is all that ever happens just one after another. I still have not had time to reschedule her MRI yet. I keep wondering when it will ever end. I am trying to staying positive. I keep telling myself that there is a light at the end of the tunnel and I will get there someday. Just that today is not that day yet; however, everyday I am a little closer.

2010-07-04T04:05:00.001-07:00

2010-07-02T05:23:00.000-07:00

Hailey Halo

We were nominee for a Hailey Halo back in January or February. When I answered the phone and it was Sean Vassilaros that was calling on a Sunday afternoon. I was a little confused to why he would be calling me from California. Then he gave us the good news that the Kutztown Ward nominated us for a Hailey Halo and a check would be coming to us by the end of the week. I believe there was a brief moment of silent because I was in total shock. I was unable to form an intelligent sentence I was speechless. I cannot even remember what I said other that thanks and appreciated what they have done for us. It could not have come at a better time things were bad. We had just found out LaRae had spinal fluid on her spine call a Syrinx. LaRae has a long list of other medical problems to go with this. We just were done with 12 weeks of serial casting and driving back and forth from Dupont in Delaware was taking a financial toll. We were having a hard time paying the mortgage. When Sean call came I knew Heavenly Father was listening he answered my prayers that somehow we would make it threw to the next month. After Sean and I talk for a while, I hung up the phone and I told Quintin. He could not believe it either. I went and prayed I thank Heavenly father for answering my prayer and always being there for me when I need him and then of chores the tears finally came not sure how long I cried for. I still cannot believe that someone/someones loved us enough to think that we deserved to be nominated for a Hailey Halo. I will always be truly grateful to them and the Vassilaros for giving us one. I am having a hard express in words how I truly feel about. God Bless them.

This is our story.

Our Miracle baby was born on 11/11/08. She was a surprise for us since I (Sharon) had been sick for 2 years at this time. Doctors had said that I was never going to get better and was not even sure how long I was going to live. After a routine surgery, my stomach shut down and I was no longer able to eat, I had IV and feeding tubes keeping me alive. We were shock when we realized I was pregnant. Doctors had told us this could never happen. I guess doctors get it wrong sometimes. Being pregnant saved my life the hormones started my stomach again and I was able to eat and get all tubes out. That is why we call her our Miracles baby.

We never expected what happen the day she was born. She was born with a rare condition called Arthrogryposis Multiplex Congentia with Amyoplasia. It was five long weeks before we got the diagnoses. LaRae had contractures from her shoulder to her fingers in both limps and has no biceps. It has been a hard year between doctors appt at three different hospitals. She has been threw so much at a young age. There is no great fix for this condition. She has gone threw splinting and serial casting to get her elbows to bend. We have had some progress, however, not a lot. In the next few years, they will surgically to bend her elbow, called tendon release and capsule release. Even with the surgery, she still won’t be able to move them on her own. She might be able to have a bicep transfer. If that was not enough she has been diagnose with a sryinx. She has too much spinal fluid on the spinal cord. There isn’t a great way of fixing that either. Doctors will have to watch to if she will need surgery to drain the fluid. She has GI problems too she isn’t gaining weight and their biggest fear is that she is choking on solid and liquid foods so she might aspirating something into her lungs. LaRae is doing great for what is wrong with her. She has more spunk and determinations then I have ever seen it such a small child.

Threw this all we have had many finical problems too. Quintin work has not been doing well so money is very tight and it cost a lot to travel to these doctors money we just do not have to spare. My faith in Heavenly Father has been the only way I have had it threw this hard time. He works miracles when you least expect it. I have learned a lot threw my daughter. She has been a blessing and a miracle.

Pictures of LaRae

This is their story

I would like to tell you about their story and why they give out Hailey Halo’s. Sean and Wendy Vassilaros had a beautifull baby girl born in August of 2006. You hope your baby is going to be born healthy and for the Vassilaros’s that was far from the case. Hailey was born premature. Her esophagus was not attached to her stomach, she had a feeding tube, lots of surgeries, and spent most of her infancy in the hospital.

The amazing thing about this little girl was she never gave up she always was smiling and it was always a “Beaut’ ful Day.” She fought so many battles and won them. She was determine not give up, I am not sure she knew what that was. You would never had known she was even sick. She had this shine about her that lite up the room. This family has amazing strength they have been threw so much and are now giving back. On August 11, 2009 Hailey past away suddenly she was doing fine. We all thought she had made it threw the worse part of it and now she was home free. Never in a million years did I ever expect to get the phone call I got that Hailey had died in her sleep. I can tell where I was and the time. I can tell every detail of that day. It was liked the world had stopped in time when I got that phone call.

I remember a scripture Wendy sent to me after my daughter LaRae was born that gave me so comforted when I was struggling with the diagnosis. LaRae was diagnosis with Arthrogryposis Multiplex Congentia and Amyoplasia Congentia.

Alma 11:43 The spirit and the body shall be reunited again in it’s perfect form; both limb and joint shall be retorted to it’s proper frame, even as we now are at this time; and we shall be brought to stand before God, knowing even as we know now, and have a bright recollection of all our guilt.

Sean, Wendy and the girls thank for your love and such a wonderful gift.

Pictures of Hailey

Here are some links to the family sites please take a look.

www.haileyshalo.blogspot.com

www.amazinghailey.com

LaRae's at DuPont

2010-06-30T05:45:00.000-07:00

LaRae had her biopsies at DuPont yesterday. It was a very interesting time to say the least. We started our day to find the van window smashed at Ronald McDonald House. I decided to stay over night instead of driving down at 4 in the morning that will teach me. The only thing that really stinks about the whole thing is that who every broke into the car stole the boy head held game systems but, they left $30.00 in cash.

LaRae’s test went well. We should have the results in 7 to 10 days. She did have some kind of minor reaction to the anestesia when we got home the doctor said it was nothing to worry about. They said this some times happens she got red in the face, arms and hot to touch.

We had one more disaster Adrian had an accident with the last pair of glasses we had for him. We were hoping they would hold up until August so the insurance would pay for two more again for the next school. It doesn’t look like that is going to happen. It has been one expensive day.

The only thing that really matter is that LaRae came threw her tests with flying colors. Everything else can be fixed or replaced over time. Life goes on and it is all good. I’ve made it threw another chapter in my life and I am still smiling. God is good.

LaRae had a set back

2010-06-03T08:00:00.000-07:00

LaRae's MRI was canceled. The nursed called on Friday to go over the night before instructions. Due to LaRae's swallowing problems and that she is now choking more frequently when she eats. The anesthesiologist said she is too high risk to put her under without him in the room. They had to reschedule it for July so the anesthesiologist could be schedule too. They are afraid that she could aspirate into her lungs.

They also said I need to call GI back because of the choking on foods and liquids she could be aspirating small amounts of food and liquids into the lungs. That is why she coughs so much when she eats. We have lots of appts at Dupont this summer with GI. I hope we have answers soon.

Update on LaRae

2010-05-11T17:39:00.000-07:00

LaRae saw Dr. Campbell at Albert I duPont Hospital at the end of March. He is her neuro surgeon. It was LaRae’s second opinion appointment for the Syrinx. I was very pleased at how well the doctor explained everything and he did not rush the appointment. There are a few reasons why she could have this problem; however, they are what they call a ‘gray area’. They cannot see it on the MRI. One reason could be a Tethered Cord; another could be a zero Chiari Malformation. He really doesn’t feel she has either one of these problems. Which comes back to our original thoughts and he kind of confirmed that, but in better medical terms, which I am not going to be able to fully explain right. I will do my best, but please do not hold against me if it is confusing.

At the time that the anterior horn cell was developing, when I was pregnant with LaRae, (they refer to it as a ‘short circuit’ happened) the brain short circuited and funky things happened and went wrong. She was born with Arthrogryposis with Amyoplasis now to find out a Syrinx probably was one of those funky things that happened at the same time too. He said it was like a domino effect, probably more things are affected, and we just did not know about them. He did say that a Syrinx was not caused by the Arthrogryposis; he feels that the Syrinx happened during the same time of development. We at least got some answers this time that made sense.

This is what our treatment plan is for LaRae: On June 1^st she goes for her second MRI and as long as the fluid hasn’t increased, she won’t need another MRI for 1 to 2 years. I am not sure what plan of action will be taken if the fluid is worse, so for now I am going to stay positive, pray a lot, and do what I am learning to do the best - leave it the Lord’s hands.

LaRae trying to fight RSV and Bronchitis. Like Arthrogryposis wasn't enough to deal with.

2010-01-31T08:22:00.001-08:00

LaRae sure seems to catch everything. We had to cancel our Nuero surgeon appt on Wed. She was just too sick and they didn't what her coming to the hospital that sick. They were afraid she would get something even worse. We had to reschedule that appt for Feb 23 almost a month away. She has a GI appt on Wednesday the 3rd hopefully she will be feeling better.

She came down with RSV and Bronchitis. It seems that the worse might behind us now. They were really thinking about admitting her. I'm so glad she improve enough that did not happen. Her ped had to put her on strong antibiotic, steroids, and neb treatments every 4 hours. Threw all of this she still smiled and blew kisses. That is her favorite thing to do right now.

She also has gained 2 pounds since December. I was happy that she is was finally growing. She's still not on the growth cart yet , however, 2 lbs is better then none. I do worry a lot about her. She has so many health problems that sometime becomes so overwhelming at times. I am thankful for my supporting husband and friends. I wouldn't make it threw this without there love.

Just another look into my life with a daughter with Arthrogryposis. Staying positive and having a strong testament in Jesus Christ is the only way to deal with all the trails our family goes threw on a daily basis.

The Spirit of Christmas

2009-12-20T16:14:00.000-08:00

Our family was away today at family Christmas dinner. When we got home and at our back door there was a bundle of wrapped gifts. We have know idea who left them. However, it brought tears to my eyes that someone/s cared enough to do something so thoughtful. I have no words to explain how I feel inside. It was tears of joy. With everything that has been going on I really haven't care too much about Christmas this year. Christmas is my favorite holiday and this year I could careless. This act of kindness has made me remember why I love this holiday.

So I'm not sure if you read my blog or not. But, you have helped me see that people still care and that someone/s cares enough to give me some hope again that I can get threw this rough time that my family is going threw. So Thank you.

1Nephi 7:12 Yea, and how is it that ye have forgotten that the Lord is able to do all things according to his will, for the children of men, if it so be that they exercise faith in him? Wherefore, let us be faithful to him.

You have given this scripture new meaning to me. Thank you for opening my eyes up to what the Lord can do. I have forgotten what he can do. God Bless you for helping me see the glorious things he can do.

LaRae's buddy Tracey Schalk

2009-12-18T18:58:00.000-08:00

When we were at Shriner's we got the chance to see LaRae's FAVORITE BUD Tracey Schalk and her brother Terry. The hospital also had three dogs visiting too this one she didn't mind too much. A Boston Terrier ran up and licked her in the face and then it was all over. She is definitely prefers cats over dogs.

Shriner's hospital for Children

2009-12-18T18:45:00.001-08:00

We saw Dr. Kozin on 12/16/2009. No surgery date yet for her elbows. We have to wait for the neuro surgeon to give Dr. Kozin the OK to due the surgery now. So we have know idea when LaRae will get the tendon releases. Her spine has taken priority over the elbows for now. We see Dr. Kozin in 3 to 6 months depending on what the nuero surgeon says on 12/29/2009.

Yes, we have an appointment at Children's Hospital of Philadelphia (CHOP) on 12/29/2009. We also have an appointment at duPont on 1/28/2009. I haven't schedule Shriner's yet.

LaRae is getting fitted for her walker in the next couple of weeks. Maybe even as soon as this Wednesdays 12/23/2009.

Hooray casting all done!!!!

2009-12-18T18:30:00.000-08:00

We are finished with serial casting. LaRae will never have to go threw that again. We didn't know until the 3rd week into doing left arm that she was having an allergic reaction to the cast materials. We don't know which part she is allergic to. So we got our wish. LaRae is cast free for Santa.

This is the end result.
Right started at 35-degree bend ended at 55-degree bend.
Left started st 45-degree bend ended at 70-degree bend. It will regress some like the right did.

No more weekly trips to duPont.

LaRae and Santa

2009-12-13T06:01:00.001-08:00

Two down more to go in LaRae's fight with Arthrogryposis

2009-12-13T04:43:00.000-08:00

Dr.Scwartz Peds

We have two more doctor appointments under our belt. I'm keeping a very positive and realistic outlook on everything right.

Everything that can go wrong will. Here's what I mean, on my way two the doctor's appt. My windshield whippers broke and not just the blades they won't turn on. So now I have to check the weather because I can't drive the van in any kind of bad weather. That would be my luck right. However, I'm still keeping a positive outlook. It could of been worse it could of been the motor instead. (knock on wood it wasn't) So any way back to the doctors appointments.

LaRae saw her pediatrician on Thursday 12/10/2009. They did a weight check, she gained 4oz. She's backed up again so it kinda canceled it out. So we really don't know what she really weighs. LaRae has to go back in a month for another weight check. She had another abdominal x-ray to see if she was impacted again. She is backed up again so they changed her meds again.
The doctor did say that LaRae's constipation probably is from the syrinx. She has to have an ultra-sound of her bladder and kidneys now. They are mostly likely are affected from the syrinx too. She been showing sign of it they just never link it to the syrinx.

LaRae is also having a contact allergic reaction to the cast materials. We are not sure what will happen on Monday at duPont. I have to put a special cream to help with the right arm and it has done wonders already. The left arm is having problems where the cast is so we will have to wait and see.

Dr. Finkel Nueromuscular

Then LaRae saw 4 different people at Chop. The main one was Dr. Finkel he was happy with her improvement. She was having a bad day with standing and that did concern him. As far as her arms, shoulders, and hands he was quite pleased. He did explain the syrinx a little more for me.
1. It's in the Thoraic
2. The fluid runs from T4 to T8
3. 4.1mm
4. They think it's a L1 (which we don't know what that means yet)

We still don't know how good or bad any of this is. I'm trying to get her in to see three different nuero surgeons. It will be awhile before we will have any definite answers. So that it's in a nut shell. She has more doctor appointment this week duPont and Shriner's. She goes to back to see Dr. Finkel in 6 months. He is so sweet on LaRae. She gave hugs and kisses this time.

Threw it all she still has the sweetest smile. It doesn't seem to faze her. She is still so happy and cheerful little girl.

Sryinc one of LaRae's new diagnosis

2009-12-09T11:52:00.000-08:00

LaRae is seeing Dr. Finkel at Childrens Hospital of Philadelphia. He is her Nueromuscular doctor he has been treating her muscles sinces she was 5 weeks old. He diagnose her with Arthrogryposis and gave us hope over a year ago when no one locally could tell us what was wrong with with our baby girl. So with that said. This is what we do know about Syrinx. That the pocket of fluid will get worse. So at some point it will have to be drain. We don't know when that might happen. So the doctors might just decide to watch it for awhile. However, we won't have that answer until we get in to see the surgeon. So that brings me back to Dr. Finkel we are going to see him tomorrow 12/10/2009 and hopefully he can get us into see a nuero surgeon quickly. Dr. Finkel is sweet on LaRae. It will be all over when she learns to bat her long eye lashes. So maybe he can pull some strings for us. I can only hope at this point and stay positive.

LaRae sees a Therapist at Cindy Miles in Allentown. They might be able to get LaRae a walker that will hold her up. It will help her learn how walk and give security she needs to walk.

Serial Casting on the left elbow.

2009-12-09T09:49:00.001-08:00

I believe it's been 3 week of serial casting on the left elbow for LaRae. We are at a 65-degree bend on the elbow. We thought we would be farther along by now. Since we only have three weeks to go. I'm not sure LaRae's elbow will get the 90-degree bend we we hoping for. If everything goes as plan she should be done by Christmas and cast free for Santa.

I couldn't bring myself to taking pictures this time since all she does is scream anymore while they are casting her. So I waited until she was home and happy playing with daddy's remote.

LaRae's right elbow has lost some degrees since the cast has been remove. Which I have been told that is normal. Marnie measured LaRae's right arm to fit her for a rental thing. Forgive me I forget what it is call. I hope the insurance will cover it. It should help keep the bend. However, I am staying positive anything is better then what she had. We just have to try to keep as much as we can until surgery time. LaRae also as a skin irritation on the right arm that the pediatrician is watching.

That's all for now.

LaRae's MRI results are in

2009-12-04T18:56:00.000-08:00

I seem to try to keep every one updated on LaRae's serial casting and today it seems pointless to do so at this time. We have gotten LaRae's MRI test results in. We were not prepared for what the GI doscto told us. We were taken back by the news because I had prepared myself that they would confirm that she would either have or not have tethered cord. But, that's not what the doctor told us.

LaRae has Syrinx or Syringomyelia. We have no idea why she has this. In a nut shell. LaRae has a pocket of spinal fluid in the middle of her back. The fluid is compressing on the spinal cord.
I was not mental prepared for this. We are going to see two nuero surgeon one at DuPont and one at Shriner's. Quintin and I want two opinions. I seems tht this is unrelated to Arthrogryposis. But, we are not sure at this time.

So at this time, I'm asking for time to deal with this. I know people mean well by giving me positive comment. But, I can't handle everyones input at this time. I need time to overcome the shock of this new. This is every overwhelming for me as a mother. As e know more we will keep everyone updated. Please keep us in your prayers. I do strongly believe "with god all things are possible."

OUR MIRACLE BABY

HAPPY 1st BIRTHDAY LaRae!!!!!!

2009-11-11T07:29:00.000-08:00

LaRae is 1 year-old today.

11/11/08

We love you so very much Scooter.

Love,

Daddy, Mommy, Adrian, Q and McKayla

Week 6 of Serial Casting

2009-11-11T06:51:00.000-08:00

Week 6 of LaRae's serial casting. This week did not go as plan. LaRae's skin isn't holding up as well as we would have liked. Therefore, LaRae's right arm needs a weeks break. Marnie fitted her for a new splint so we do not lose any progress we have made over the last 5 weeks. Dr Jay thinks that they will be able to get LaRae's elbow to 90-degrees. They will have to extend the length they serial cast LaRae's elbows. I guess my hope that we would done before Christmas isn't going to happen. That's OK......

It's now Tuesday LaRae's arm is having more problems then when they first took off the cast. It has red blotchy spots and it's swelling. I did not count on a set back. LaRae can't wear her splints for long periods now. I am hoping I will be able to put the splint back on tomorrow for most of the day and they won't cause any problems. I just pray that she doesn't lose the degree of bend that she has work so hard to achieve. She as endure so much threw this processes. The final objective is worth what she has to go threw it is just hard as her mother watching her endure so much as such a young age. She is making me a stronger person. This is a very humbling experience for me. She is such a determine girl and she is a fighter. Heavenly Father gave her such an incredible spirit.

Week 5 of Serial Casting

2009-11-11T06:34:00.000-08:00

Week 5 of LaRae's serial casting. We made it yet threw another week. LaRae has one more week to go before they will start casting the left arm. They were able to get the elbow into a 65-degree bend. Which is more then I ever thought was possible for the right elbow. We still have a long way to get the goal of 90-degrees. I really did not think we will achieve that goal only in a week to go. However, I am ecstatic that LaRae's right elbow has come as far as it has. If I was skepitcal in the beginning if this would, work I am a believer now. This was the only way LaRae's elbow was ever going to bend without surgery. She will still need the tendon releases in the future this will make those surgeries outcome better. My prayers are being answer everyday thay she has an improvement regardless of how big or small. I have been blessed to be her mother.

LaRae's 1st Halloween

2009-10-31T15:10:00.000-07:00

HAPPY HALLOWEEN

4th Week of Serial Casting

2009-10-31T13:31:00.001-07:00

Week 4 for LaRae's serial casting. We made it threw another week. LaRae has another 8 weeks to go. She did really well this week. She was still not happy with Amy any Marnie. However, she was a trooper. Her tears only latested a few minutes after they were finished this week. I can handle that. Her eblow is progressing rather well. we are at a 60-degree bend it's not a clean bend . However, it is still 25 for then when we started. They had to bi-valve her cast again. that's when they have to put cuts in the cast to keep it from becoming to tight (that is the techincal term for it.) Well, that about it for now.... Wish us luck with the weeks to come..... Until next time......

The cuts are the bi-value.

They are cuting the old cast off.

This is LaRae's bend.

LaRae doesn't mind this part.

She likes to watch.

They are bending the elbow.

She not happy the are really bending and holding

it untill the cast is dry.

Now they are adding the color.

Almost done!!!

They are Bi-value the cast.

LaRae hates this part.

The end!

Week 3 of serial casting.

2009-10-23T10:27:00.000-07:00

LaRae and I headed down to duPont Monday October 19, 2009. They recasted her elbow. We are at a 50 degree bend. It's not a pretty bend. However, we are making progress. I also have a happier little girl today. She's not complaining about the cast too much, nothing like last week. She wasn't happy about another one going on. They changed the cast a little bit. We only have one layer of fiberglass wrap around it instead of two. They also cut the cast so their would be no pressure that would cause pain. They also had to wrap it with colored tape to hold it together. It seems to be working it's even lighter so LaRae can lift it a little too. So this week was much better.

Week 2 of LaRae's Serial Casting at duPont

2009-10-15T05:57:00.000-07:00

Week 2 of LaRae’s serial casting. We headed to DuPont on Monday October 12, 2009. The kids had off from school. I took Adrian with me - he was a big help. Quintin was home also so he had Q and McKayla with him.

They started by sawing off the old cast which LaRae did not like at all. It was loud and the vibration of the saw wasn’t great at all!!!! So that’s were our nightmare begun… Then they started to recast eminently. She never stopped screaming. I had to stop taking pictures because she was getting too hysterical. I did not take pictures of everything this time. We waited at the hospital for 2 hours hoping that she would stop crying; she didn’t but they still sent us home with the hope she would get better by Wed.

On Tuesday morning, I had to take her to the Pediatrician. I found out that the cast was too tight. I had to drive LaRae back down to DuPont so they could cut the cast to relieve the pressure. That seemed to do the trick. She is still a little crabby - I think that’s from the lack of sleep at this point. We now have 2 weeks behind us. Until next week….. Wish us luck…

Monday when they recasted LaRae's arm. I stopped taking pictures. I couldn't handle her crying and not being able to comfort her.

This was on Moday when the cast was still too tight.

Adrian trying to get LaRae to stop crying.

The cut in the cast to relieve the pressure.

This is the LaRae we all know and love.

LaRae 1st day of serial casting at duPont.

2009-10-08T13:30:00.000-07:00

LaRae had her 1st serial casting on October 5, 2009. They were originally going to do the left elbow first. However, after talking to Dr. Jay he decided to serial cast the right elbow instead. LaRae has been using the left arm a lot more over the last few weeks and that was the reason for the change in elbows.

The casting went well. LaRae tolerated it pretty well for the most part. We had more problems keeping LaRae from helping. They set her elbow at a 45-degree angle. She was not happy when the bent the elbow that far. She does have problems with sleeping at night. We have 11 more appts. to go. It will be a long sleepless 12 weeks for mom. However, if Dr. Jay gets the results he is looking for with LaRae’s elbows it will all be worth it. There is a chance we could due round two of serial casting in the future before her tendon releases. That will all depend on how well it works this time.

Every night the kids say a prayer before going to bed for LaRae’s arms.

The day before

After we were done and at home.

Thanks for being so patient while I update my blog. It's finally done.

Thanks for following our story.

Giddy up Horsie

2009-10-08T12:30:00.001-07:00

LaRae loves climbing on Adrian's back.

Adrian and Marnie dressing up LaRae

2009-10-06T14:25:00.000-07:00

August 22, 2009. Yet another appt to have LaRae's splints refitted. Marnie decided to make static splints too. They fit the whole arm with a little movement in them so we can try to increase the bend before we start the serial casting on October 5, 2009. I did not take pictures this time of them because Marnie and Adrian were having so much fun dressing LaRae up. That I took pictures of that instead.

Finally we saw Dr. Kozin at Shriner's

2009-10-04T14:20:00.000-07:00

It's August 12, 2009 we are heading to Shriner's to see Dr. Kozin. We saw him at the AMC convention. I really think we will get a surgery date for LaRae's elbows releases. It probably will not be for another 6 months. However, that’s fine with me. I really hate this drive. So we saw Dr. Kozin it was not what I expected. I was disappointed he would not schedule the surgery. He wants her walking first. I did not understand his decision first and disappointed at it. He wants to see her back in four months and hopefully she will be walking by then and then we can discuss surgery options.

While I was in the appt my phone rang. For some reason I forgot to turn off the ringer. It was at that time he was telling me he was not going to schedule her surgery. I was so frustrated with that decision. I thought finally we will get the date and LaRae will finally be able to bend her elbows. Then my phone rang. We finished up the appt and I called the person back. I’m not going to go in to details about the phone call. However, it was devastating news for a family we know and love. It was then it hit me LaRae does not even care if her elbows bend she does not even know that they should. It’s I rushing the surgery because I think she has to have elbows that bend but does she really need them to bend right now can’t it wait until she is older? Dr Kozin comment about LaRae was I could leave her with him and pick her up in 4 months at her next appt. I keep her on a short lease when they start walking around with her and showing her off. We decline his offer.

So for now we have known idea when LaRae will have any surgeries. She is starting serial casting on October 5, 2009. In December we see Dr. Kozin again. She is not even close to walking at this time. She just started to sit up unsupported. So we have a long way to go.

LaRae stole another doctor's heart.

2009-09-14T12:31:00.000-07:00

LaRae was born with two holes in her heart. I am glad I only knew about the one. She had a Cardiologist appt at DuPont on August 6, 2009 with Dr. Goudie. That’s when he informed us that she had two holes in her heart. You can image my surprise to that news. I was already worried about this appt with only knowing about the one hole I cannot image what it would have been like if I would have known about the other. So I am glad I did not know. We were there a lot longer then I have anticipated. The one I knew about was a PDA, which is Patent Ductus Arteriosus. We did not know LaRae also had a PFO Patent Foramen Ovale/ASD Atrial Septal Defect. Which is what everyone referees to as a heart murmur? The doctor was concern since my dad past away from a blood clot. So he was making double sure that ASD/PFO had closed up. As he was checking LaRae, I was praying that the murmur they were still hearing up until a week before that appt was gone. She passed all three tests with flying colors. So she will not need surgery on her heart. He was glad to release her from his care but also sad. She stole the heart of another doctor.

What is it?

The ductus arteriosus is a leftover fetal artery connecting the main body artery (aorta) and the main lung artery (pulmonary artery). If this artery stays open (patent) after birth, it’s called a patent ductus arteriosus (PDA).

What causes it?

The ductus arteriosus is a normal fetal artery connecting the main body artery (aorta) and the main lung artery (pulmonary artery). The ductus allows blood to detour away from the lungs before birth.

Every baby is born with a ductus arteriosus. After birth, the opening is no longer needed and it usually narrows and closes within the first few days of life.
Sometimes the ductus doesn’t close after birth. Failure of the ductus to close is common in premature infants but rare in full-term babies, and the cause is usually not known. Some patients can have other heart defects along with the PDA.

What is it?

An ASD is an opening or hole (defect) in the wall (septum) between the heart’s two upper chambers (atria).

What causes it?

Every child is born with an opening between the upper heart chambers. It’s a normal fetal opening that allows blood to detour away from the lungs before birth. After birth, the opening is no longer needed and usually closes or becomes very small within several weeks or months.
Sometimes the opening is larger than normal and doesn’t close after birth. In most children the cause isn’t known. Some children can have other heart defects along with ASD.
How does it affect the heart?
Normally, the left side of the heart only pumps blood to the body, and the right side of the heart only pumps blood to the lungs. In a child with ASD, blood can travel across the hole from the left upper heart chamber (left atrium) to the right upper chamber (right atrium) and out into the lung arteries.

If the ASD is large, the extra blood being pumped into the lung arteries makes the heart and lungs work harder and the lung arteries can become gradually damaged.
If the hole is small, it may not cause symptoms or problems. Many healthy adults still have a small leftover opening in the wall between the atria, sometimes called a Patent Foramen Ovale (PFO).

2009-08-18T12:12:00.000-07:00

Philadelphia AMC Convention

We were able to go to a convention for Arthrogryposis with the kids July 17 & 18. They have one very year. It was great seeing that we are not alone. There are so many kids with this but every kid is affected differently no two are alike. We had a chance to talk to LaRae’s surgeon Dr. Kozin from Shriner’s.We were able to locate a great therapist in the area too. So between Early Intervention and outside therapy we will be doing therapy with LaRae 4 times a week. LaRae’s P/T Marnie from DuPont was there at convention she said that we are going to have to serial cast LaRae’s arms now too. That was something I did not think we were going to do. We are going to do that now that the kids are in school. I will be making weekly visits to DuPont to have LaRae’s cast removed and put back on for about 6 weeks.

Convention was great and was very informational. We meet many great friends. Learn a lot about what is wrong with LaRae. We really were blessed she could have been so much worse. I have some pictures of her panting. This is so not like me to let my kids get dirty. For the people who really know me this was hard for me to do. LaRae is teaching me things that I did not think I could do before.

They were able to go onto a Philadelphia Fire Truck. The boys thought that was the best part besides the indoor pool.

Saturday we also celebrated McKayla’s 8th Birthday. We are still trying to plan a sleep over party for her friends. School has already start and we still haven't had one yet.

I'm trying to update myblog as often as I can. So some of this is from the middle of July so please be patient with me. Things have been crazy here with the kids being home for the summer. They are back in school and I can breath again. Thanks!

"RRRibbit"

2009-07-25T18:01:00.000-07:00

Another doctors visit at duPont. We were there for a GI appt and refitting for splints again. I feel like I live there. This time we stayed over night at the Ronald McDonald house which was very nice. We still don't have any definite answers about LaRae's GI problems. They are running more test. So we will be going back to duPont in a few weeks for some more test and refitting of the splints. We will also decide then about when to start serial casting her arms.

Miracles on Madison Street

2009-07-06T19:31:00.000-07:00

We were finally able to get family pictures done with LaRae. I think it's been 6 years since the last family portrait was done. So it was well over due. They must of took 60 pictures. That was really hard picking our favorites. So here are a few. I'll post more at later time.

2009-07-02T19:44:00.000-07:00

FRIENDSHIPS

Friendship is a promise spoken

only by the heart.

It isn't given by any pledge.

It isn't writen on any paper.

But friendship is a promise

that is renewed every time

we meet and smile and enjoy

the good times that come from simply

being together.

It's a promise to share

both glad and sad times....

a promise to think of each other fondly,

whether near or far apart.

Friendship is a promise

spoken only by the heart.

A promise that I feel

you and I will always keep.

D. Walley

2009-06-23T17:59:00.000-07:00

Kim Jenny, Dr. Powell-Hamilton, Becky, McKayla, and LaRae

Another visit to duPont.

Quintin was able to go with LaRae and I for her genetic counseling appt at duPont. They are running some blood test to see if her Arthrogryposis is genetic or not. We will not have those tests back for a few months. We also were able to get the results from the ultra sound of her elbows. Dr. J told us that none of the bones are out of alignmant and the joints look good as far as the bone are concern. Therefore, it looks like everything is tendon and soft tissue issues. We were really hoping that she was not going to need surgeries. However, surgery is our only option now.

We see her surgeon Dr. Kozin at Shriner's in August. At that time, we will know how soon they will release the tendons in both elbows. We will keep everyone update, as we know things.

McKayla had her dance recital on Sunday.

We went to a World War II Air Show in Reading a few weeks back. Quintin thought the kids would enjoy it. I am not sure that was the case. I know Quintin enjoyed it. The only thing that the kids wanted was the food. Adrian and Q thought the planes were neat. McKayla said, "it was too hot." Thank goodness for the sprinkler tent. I am not sure LaRae liked going threw it or not

2009-05-25T12:01:00.000-07:00

Happy Memorial Day

In my family, I have two generations of veterans. My father, brother, and my husband have all served our country to keep us safe and to protect our freedom. I am very proud of them. We have a very close friend Patty that thanked Quintin for his Military service at church this Sunday. I am grateful that she remembered that Quintin served his country . Because so many of us have forgot about our veterans that have come home 20 years ago after fighting a war that has been forgotten. Therefore, to those that are serving now and did serve. My family is proud of you. You are the reason why we are a Free Country!!!

It has been a great privilege having missionaries living in our home. it brings me to remembering that might not be possible if I did not live here in the USA.

LaRae trying to walk!!! I'm in trouble!!!

My mom gave LaRae her first taste of real food. The picture explains what LaRae really thinks of that. If the meaning a picture is worth a thousands words. Then these pictures speak for themselves. I will let you be the judge of that.

LaRae is teething. She is putting everything into her mouth.

LaRae is fighting the battle of Arthrogryposis at 6 months old.

2009-05-18T08:48:00.000-07:00

LaRae is learning to sit in a high chair and is doing therapy while in it also not so happy about. She also was refitted for her splints not happy at about that. She's our champ. Keep up the good work.
We love you Baby Girl!!!

This is Marnie LaRae's P/T and Dr. J. LaRae's Doctor for the Arthrogryposis at duPont.

Marnie and Renie are the two P/T and O/T Therapist at duPont. We always see Marnie. Renie always comes along because she thinks LaRae is so dang cute. Renie deals more with the lower limbs. But LaRae seems to attrack everyone. We always seems to hear that she has such great thighs.

LaRae went back down to duPont on May 8, 2009. It was a very long day. We got really great news about her wrists because they are responding to therapy really well. They didn't change the degree of the angle in the splint. They added padding which puts her wrist a little past the neutral position which is really a good thing. Her nickname is Houdini. She gets out of everything, even splints. She figured out a way to get out of her night resting splints, so Marnie, her P/T, fixed her night resting splints. So far she can't get out of them. That's the good news.

We weren't so lucky on her elbows or shoulders. I thought I was getting range of motion in LaRae's elbow only to find out it might be the wrong movement, which could in the long term damage her cartilage in the elbow. So now we have to have the elbow ultrasound to see which way the elbows are bending and if the tendons are going to release at all. They are leaning more towards tendon releases. Her shoulders are showing real problems for her too. They rotate inward so much the back muscles are stretching over the shoulder blade. The upper body is mincing a spinal cord injury even though she does not have one. But that's how the shoulders are presenting at this time. Hopefully with some new P/T exercises we can get her shoulders to start going in the right directions. We have 6 more doctor appts over the next month to go to. LaRae has major GI problems, so we have to see a GI doctor at duPont. They think maybe she has a milk allergy. She is going for genetic counseling, she has to have an ultrasound and refitting for splints. She will be seeing Dr. J again for the Arthrogryposis. We are going to CHOP on May 22 to see Dr Finkel for her muscles.

QUINTIN and the KIDS HIKING

Quintin decided to take the kids and LaRae for a hike around the field. It was LaRae's 1st big day outside. We had to try out the new backpack. She loved it. I can't wait until she can grab Quintin's hair and pull it. Q and McKayla aways did that when he would put them on his shoulders. LaRae is such a stinker in every other way so far. I'm sure she is going to pull all kinds of stunts that none of the rest thought of. She's always getting into trouble, at least as much as a five month old can get into.

Here are just some cute pictures of her in her bumbo chair. Sorry I couldn't turn them. I still think they are cute.

EASTER
Sorry it's taken me so long to get my Easter pictures on here. My batteries went dead on Easter of course. We spent Easter at Quintin's brother Jesse and wife Sue's house. Quintin's whole family was there and we had a great time. There was 4 generations of Quintin's family there and 8 out of 25 them were very loud kids in a small house.

2009-04-04T14:47:00.000-07:00

2009-03-26T18:32:00.000-07:00

It's been awhile. We are in the process of getting the greenhouses ready for the season. We are planting a lot from seeds. I'm not sure Quintin will want to do that again next year. It's so neat watching the plants grow from seeds! The anticipation of them coming through the soil is driving me nuts! I'm being a little impatient. I want everything to be sprouting now.

LaRae has had a few doctors appointments at duPont in the last week. She was refitted for her splints 2 weeks ago. Marnie is Larae's P/T ( physical therapist) at duPont. Marnie made a night resting splint for her. She's not too in love with that one! Right now she will only tolerate it for a little while. The left wrist splint was rubbing, so LaRae couldn't wear until we went back duPont to have it fixed. Since she couldn't wear it for over a week Marnie and I notice that the left wrist regressed. That will be a big problem for her. If we don't keep them on the wrist they will go back to the way they were at birth. We were able to get both wrists into the neutral positions (neutral: means when the arm and wrist are in straight line from the shoulder to finger tip). I was really hoping we would see great improvement with her elbows. They haven't really changed much. We are hoping to get LaRae's elbows to move passively (which means that we will be able to bend the elbows for her). We know that she is going to need a muscle transfer in one of the arms. Since the biceps muscles never developed, she will never be able to move the elbow on her own. They will transfer another muscle from somewhere else and put it into one of her her arms. Hopes are that she will be able to move one of her arms on her own and the other one will move passively. If she doesn't start to move either arm passively they will have to do a tendon release and lengthen. The one thing that has improved a great deal is she can lift her left arm to about chest level. Her right arm she does not move as much or even as high as the left arm.

LaRae's new Night Resting Splint.

Renie O/T duPont

They are wonderful. I'm not sure LaRae is coming home with me when I take her to duPont. They love her so much there. She is well love everywhere she goes. What's not to love. Just look at how cute she is.

Marnie P/T at duPont

Q had his Blue and Gold banquet last Saturday. They did a Hawaiian theme. They had a lady come that had lots of drums. We got to listen to 40 boys bang on drums for a half hour. They had so much fun! I don't think I would recommend it for a birthday party. It was loud.

Quintin Sr. and Adrian went to winter camp with the Boy Scouts a few weeks ago. It was really cold that weekend. Adrian had fun. They learned how to build a shelter and to start fire from a stick and bow. I don't think anyone was successful with the fire. They played ice hockey out on the frozen lake

McKayla and I went riding on Ladybug. Ladybug was so dirty from rolling in the mud. McKayla can't wait until spring gets here so we can go riding.

I couldn't find my christening gown and hat when I had LaRae blessed. I wanted to take pictures f her in it anyway. I thought it would be cute to put her in one of my Longaberger baskets. I used the blanket my friend from church made for LaRae.

Family Photo's

2009-02-27T13:49:00.000-08:00

Smokey and LaRae Taking a Cat Nap

2009-02-26T07:41:00.000-08:00

I thought everyone would enjoy these pictures. When I put LaRae down for her nap. Smokey was on my bed. I guess he decide that LaRae blanket and feet looked inviting. So Smokey took an unauthorized cat nap with baby girl. He got evicted once I took these pictures. He is such a fat cat.

Ultra sound at Chop for Amyoplasia

2009-02-25T12:44:00.000-08:00

LaRae went to see Dr Finkel down at Chop and 3 other doctors. She had an ultrasound of all four limbs. They were hoping to rule out different things that could cause the problems with her muscles and they came to the conclusion that she definitely has Amyoplasia. For those who are wondering what this is:

This is the Doctor who did the ultra sound. He didn't want to get all full of goop.

Amyoplasia is a generalized lack in the newborn of muscular development growth, with contractures and deformity at most joints. The lack of fetal movement known as fetal akinesia allows extra connective tissue to form around the joints and, therefore, the joints become fixed. This extra connective tissue replaces muscle tissue, leading to weakness and giving a ‘wasting’ appearance to the muscles. Additionally, due to the lack of fetal movement, the tendons that connect the muscles to the bone are not able to stretch to their normal length and this contributes to the lack of joint mobility as well.

Dr. Finkel did confirm that LaRae is missing (if you want to call it that) her bicep muscles in both arms. They’re not really missing, but they never developed either so basically they’re missing. The biceps will never develop into anything. She has triceps; not sure how good they are. She has some muscles around the elbow. Her forearms are her best muscles out of all the muscles in her arms, but they still aren't great. All the doctors say is that "she has the best looking leg muscles they have ever seen." So what she doesn't have for arms she sure made up for in her meaty little legs! The doctors will be adding finger splints to her wrist and elbow splints. I can't wait to see what that looks like! We go back in 4 months to see how everything else is going and then we will make more decisions from there. Just to let everyone know - this is going to be a long process. There is no magical surgery or quick fix to this condition, so the doctors don't rush any of their decisions.

LaRae's P/T therapist

LaRae's O/T Therapist Tim Estilow

So we made it through another round of doctor's appointments. LaRae seems to have all the doctors making puppy eyes at her. This set of doctors, I think, wanted to play with her more then anything else. Poor Dr Finkel when he got to see her see was done with it all. All the other doctors had worn her out! She wasn't having anymore of it. So Dr. Finkel wanted to know how "his girl" was doing? Well, let’s say she was a little fussy!

Dr. Finkel

We all went down to Shriner's Hospital. I wanted Quintin and the kids to meet Tracey and her mother Cheryl. We had a great time! Q wants to go back down this weekend and play with the dinosaur that was down there. Adrian is such a teenager - all he wanted to due was play the video games and eat. McKayla just played and hung out.

Tracey, LaRae, and Sharon at Shriner's Hospital

2009-02-25T12:27:00.000-08:00

They love their little sister. She gets lots of hugs and kisses.

Our First Trip to Shriner's Hospital for Children's (Arthrogryposis)

2009-02-15T22:08:00.000-08:00

I took LaRae to Shriner’s Hospital on Wed. 2/11/09. It was an exciting trip down. When I hit North Philly, the car picked the most inopportune time to over heat. I kept saying prayers that we would at least make it the Hospital before it over heated to the point I would be left stranded on Broad Street. I was just a little bit stressed at that point. But, we made made it and with some time to spare. We saw a wonderful group of doctors. Dr. Kozin would be LaRae's main doctor. They were very vague on what they were really going to do at this point in time. Surgeries are an option for both the wrists and elbows. We are unsure of the details of the surgeries. We have to return in 6 months. At that time we will reevaluated her progress and then figure out where to go from there. So for right now I do physical therapy with LaRae 3 times a day and her splints come off and on throughout the day. We go to CHOP 2/20/09 for an ultra sound on the muscle in her arms and shoulders. We still have to go to duPont in Delaware for P/T and for her splints on 3/6/09.

Tracey, Cheryl, and LaRae at Shriner's Hospital for Children.

While we were at Shriner's, LaRae and I had the privilege of meeting a wonderful girl named Tracey, and her mother, Cheryl. Tracey found LaRae through our blog. We have been Emailing back and forth. She's an inpatient at Shriner's right now. We were lucky to be able to meet her! It really help talking to her. She's 21. She has been through a lot and she still has the brightest smile I think I have ever seen. She gives me such great hope for LaRae. I truly believe my little girl found another big sister. I don't think you can ever have too many people that truly love you. Tracey has warmed our hearts. She feels like one of the family. LaRae and I had a wonderful day at Shriner’s in spite of my car. We did make home safely!

Tiny Fingers

Tiny Toes

Tiny Nose

LaRae's 1st Day at Alfred I. duPont Hospital for Children's

2009-02-01T15:08:00.000-08:00

LaRae's wrist and arm spilts.

We took her down to duPont on Friday 1/30/2009. It took a total of 5 hours with doctors and therapist. We learned a lot while we were there. The staff was great there. They took us an hour early. They fell in love with her as soon as they saw her. I wasn't sure she was coming back home with us. The one therapist was almost doing somersaults because she didn't have to see her for her legs and crying at the same time because she wouldn't be working with LaRae either. We found out that her reflux, her arching her back and her red nose isn't a birth mark it is all part of AMC. We will be going back down to DuPont every 5 weeks to be refitted for her splits. They will will keep increasing the angle in the bend in the elbow and straighting out the wrist. Hopefully in 3 weeks she will be able to tolerate the splits being on all night and on most of the day . They are left on 1 hour at a time with 1/2 hour rest all day long. We also have different types of therapies to do with her. The one is call belly time which Q and McKayla like doing with me and the other is to get the arrange of motion better in her arms. I am going to look into other kinds of therapies like water therapies. you can start them pretty earliy and horse back riding therapies. We have great hope that she will live a pretty normal life. DuPont won't be able to due her surgeries so we still have to go to Shriner's Hospitals. But, surgeries aren't going to happen until she is at least 12 month to 18 months. They will only due one arm at a time. They will decided at that time which are is responding the best to therapy. They will do the surgery cast it for several months they we have months of therapy before we know if the surgery has a success. Then they might do the other arm. Then we start all over again with that arm. Let me tell you this was so much information to take in at one time. Brain over load. She will never crawl like a normal kid. She will have a creeper. She will lay on this so that her legs will push her around. It will be like she is crawling. She won't be able to feed her self until the 1st and 2nd surgeries are done. They won't be finished until she is 3 years-old. She will have to were the splits and do therapy into her teens. So we have a very long road. they say it does get easier when they get older. These first 10 years are the roughest. She still has to go to Children's Hospital of Philadelphia (CHOP) for an ultra sound of the muscles. We found out that not only are they under devloped. But, she also is missing some. So we need to go to CHOP to see how bad that is. From my under standing is there is not much they can do to fix this. They need to know which ones aren't there at all. So please keep us in your prayers. I'm (Sharon) going to need them.

Our Miracle Baby Girl

2009-01-22T19:50:00.000-08:00

This is my Miracle she has Arthrogryposis Multiplex Congenita and Amyoplasia Congenita. Due to me being so sick for the last 2 years I wasn't supposed to be able to have any more kids. Well what do doctors know. As my husband explains it, I went from dieing to being pregnant. The scary part is that's really what happened. I beat the odds and surprised all my doctors. I then surprised myself with getting pregnant. She was born with a rare disorder. Only 3,000 babies are born with it each year in the United States. We don't know much about it. She has doctor appt.s at Shriner's Hospital and DuPont Hospital. She has Limited range of motion in her shoulder which rotate inward. Her elbows do not bend. Her wrists are flexed towards the forearm. They say with surgeries and physical therapy she will get better use of her arms. After everything our family has been through in the last 2.5 years. She is a blessing. We love her just the way she is. God gave her to us for a reason. Miracles due happen, you just have to have faith.

LaRae Sianna Lawley's Blessing

2009-01-22T19:32:00.000-08:00

LaRae was blessed on Jan. 28th, 2009. We are so blessed to have been given this precious gift from Heavenly Father. I'm so honor she picked me to be her mother. She completes my family. I finally have all my little angles. She is my miracles. She was never to be.

Happy New Year Everyone!

2009-01-19T13:17:00.000-08:00

Happy New Year to everyone. Where did the year go. So much has happened this year. Since this is our first time doing this we will fill in everyone. I'm ( meaning Sharon) doing a lot better. Seems that my health is better for the moment. I will take that. The last 2.5 years have been very hard for my family and I. But with prayer and faith we got threw it. We were blessed with a miracles baby girl LaRae Sianna Lawley born 11/11 /08 at 11:08 pm. She is doing good. We will be faced with some medical challenges with her. She has been diagnosed with Arthrogryposis Multiplex Congentia and Amyplasia Congentia. She is unable to bend her arms and wrist and has limited arranged of motion in the shoulders. She has been seen at Children's Hospital in Philadelphia and has an appt. a Shriner's Children's Hospital at Temple in Philie in Feb. We aren't sure if they will be treating her or not. We will have to wait and see. Quintin's work has slow down. Hopefully things will pick-up soon. McKayla got a horse for her birthday from a friend. She loves going riding. Adrian is always on the Wii or on the 4 wheeler or dirt bike. Q Is always outside doing something or playing with legos.