LaRae's bedtime story

"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

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.

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

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

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

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

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

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

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

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

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.

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

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.

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

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

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

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.

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.