LaRae at Lehigh Valley Hospital

LaRae is a trooper. She is enduring another hospital admissions. She was admitted to Lehigh Valley Hospital Monday night Nov 26, 2012. Her pediatrician said since this was her third episode with vomiting in less then a month we had to take her to the ER. She was admitted late Monday night. The doctors aren't sure if she has a virus or not. Her sugar was really low, her blood work was off and she was dehydrated. I was hoping we would be able to go home today. It looks like she is staying another night. They are running more test. Hopefully LaRae will feel like eating soon.  Her color is a little better then this morning.  

 

 

 

LaRae is watching a Tinker Bell movie in the ER on an iPad.

Dance

LaRae had her first dance recital. We are so proud of how far she has come. It just amazes me what she overcomes on a daily basis. Nothing ever seems to bother her. She just goes with the flow. There are four things she loves to do dancing, singing, swimming and horse back riding and she is only 3 1/2 years old.

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

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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.