Our Amazing Grace

We Are Very Blessed!

2011-07-30T21:48:00.000-05:00

There are a lot of new things happening in Grace's life since I have written last!

In January, Gracie's Ride became a reality! After a very successful benefit, put on by our amazing family and friends Grace got her new van. I don't know how we got Grace from place to place before this van! It is absolutely amazing. It is so easy to buckle Grace's wheelchair down and be on our way. Grace loves her new van as much as we do. She used to hate riding in the car, but now she is more comfortable and happy when riding in the van. She actually smiles and gets so excited when she knows that we are going somewhere! We are forever grateful to all that helped make this dream a reality!

Grace on her way in the van

In January, after a battle with our insurance company, we were able to get Grace a very special bed. It is called a SleepSafe bed. It is fully electric, so that we can easily raise and lower her for dressing and diaper changing. The head of the bed also elevates to help ease Grace's reflux at night. Mommy and Daddy can also crawl in to cuddle and help Grace fall asleep. It is awesome! Grace thinks she is a big shot in her new bed!

All cozy

Such a big girl in her new bed

The biggest change will happen in August, Grace is going to be a big sister. We found out in February that Grace will be a big sister to a healthy baby boy named, Brady. We have been reading her books about becoming a big sister, and she smiles when we talk about her brother. It will be a big change, but we think Grace and Brady will be the best of friends!

I'm Going to be a BIG SISTER!

My brother, Brady

Daddy reads me a book about my Baby Brother

Another big change is that in February we moved into a new home! We love that it is a ranch style, with no steps! Everything is very open, so it is much better for Grace. It is also in McFarland, where I teach and where Grace will start Early Childhood!

And that brings us to a big change happening in September...Grace will turn 3 and that means she will be starting Early Childhood! The best thing about Grace going to school here in McFarland is that my school is right next door...just a few steps away. I know all of the staff that will be working with her, which makes sending her off to school just a little bit easier. We met with the school and all of the people that will be working with Grace. We had her IEP, and some great goals were set for Grace to work on this school year. She will go to school in the mornings for three hours. Beau will drop her off and she will take the bus home...yes that is right my baby girl is taking the bus! I think she will really like her new school and making new friends!

The other blessing that has taken place recently is that we found out that Grace would qualify for some Home Health Care services. We now have a college student, who is wonderful with Grace, coming into our home 4 days a week, for 3 hours each day. She helps will all of Grace's care, therapy, and feedings. It gives Beau and I some time to get things done and run errands too. We are so grateful for this time!

Grace's health has been stable and her kidneys have actually improved just a little bit. We continue to pray that Grace stays healthy and makes strides each day. She has been such a happy sweet girl and gives her mommy and daddy lots of laughs and smiles! She is so much fun and we are looking forward to seeing Grace and Brady together soon!

At the zoo with mommy and daddy

Getting to be such a big girl. So pretty!

Gracie's Ride

2010-12-30T19:56:00.000-06:00

Gracie's Ride began because friends and family saw how hard it was for us to take Grace from place to place in our SUV. In order to take a trip anywhere we had to first load the car with Grace's Wheelchair, feeding pump, suction, and diaper bag. Then put Grace into her car seat, and off we go. Then when we get to where we need to be, we unload it all. It is truly exhausting going anywhere.

So the idea of getting a wheelchair accessible van for Grace came into our minds. After looking into it, and finding out how expensive it would be to get a van with a wheelchair lift, we let the idea go, because it was something we could never afford. This is where the idea for "Gracie's Ride" began.

The planning began about a year before the event. Many of our family and friends spent many hours planning this very special event for our family. We couldn't believe the support from everyone, even people that had never met our family! It was all very overwhelming. We can never thank all that were involved enough!

The day of the event came and oh my gosh, it was bigger than we could have ever imagined! Walking into the benefit for the first time, so many feelings rushed over us...I could only cry. All of the support and love for Grace...she has truly brought so many people together! There were over 300 things donated for the silent auction, tons of food, and great entertainment. Grace was a trooper, she stayed the whole time, just loving all the people and music.

In the end, we were able to purchase our van and we are now just waiting to get the call that it is ready for us to pick up. I can only imagine how much easier this is going to make our lives. We are so excited and grateful to you all!

We all wore Gracie's Team Shirts, pink of course!

The girl scouts helped in the kids corner, they make Grace her own vest!

A very special wagon donated to Grace!

Grace spent the night in the rocking chair

Daddy, Grandma, and Grace

Look at all the people who love us!

Grace turns 2!!!

2010-09-30T14:46:00.000-05:00

I am not sure where the time has gone, but our baby turned 2 on September 7th!!! This year was a much happier celebration for me, not sure why...maybe I am getting used to the idea that Grace isn't the average 2 year old. No that is not it...I will never get used to that. Birthdays bring the reminders of the milestones children reach. Two means, running, talking, causing trouble....but for Grace it means another year of challenges, but we are so grateful for another year! It is hard knowing all that Grace has to go through! I just try not to think about all the challenges, and concentrate on the happy things, and there are a lot of happy things! Grace has made amazing progress this year, and I just look forward to what comes next. Anyway, she was so happy on her birthday! She knew it was a special day. All giggles and smiles this year! We celebrated by having a small party for her. She enjoyed opening her presents and playing with them. The frosting on the cake was good too! She loved looking at her candles and listening to everyone singing to her. It was a priceless day! Happy 2nd birthday to our Amazing little lady! We love you so much Grace!

So Happy to be 2!

Jambos from Mommy and Daddy

I LOVE Elmo!

My first Cake

All my cousins were at my party too!!!

Me and Grandma Great

Grace Rolls Over

2010-07-30T21:50:00.001-05:00

Photo and video editing at www.OneTrueMedia.com

Summer Update

2010-07-30T21:48:00.000-05:00

Well, I would say it is about time I updated! It has been a fun but very busy summer! I have really enjoyed being home with Grace this summer. She is getting so big and changes everyday.

Doctors and More Doctors:

So we took Grace to the eye doctor and found out that she has good eye sight. Normal for her age...and let me tell you, not many doctors ever use the word normal when they talk about Grace. But what is normal anyway :)! It was still good to hear. We also made our way to the kidney clinic, which is alway scary because Grace always has to get blood work and a urine sample (they use a catheter, not fun). Neither went well, as they could not get the blood from her. They tried both arms while she screamed and looked at her mom for help...it was a horrible day. We had to go back the following week and they finally got her blood in the first try. The good news is that Grace's blood work showed that her numbers for her kidney function are still stable, which means no transplant for now, we just hope they stay stable for a long time! The kidney doctor is a little worried about her growth pattern. They feel that her growth has slowed down and that she is small for her age. This may be due to Emanuel Syndrome, but can also be linked to renal failure. So she may set up an appointment with Endocrine, which could lead to giving Grace hormone shots daily (we are saying lots of prayers that we don't have to go down that path!) We also saw the orthopedic doctor and found out that Grace's left hip is dislocated and her right hip is also nearly out. It amazes me that she is not in any pain with this and that she still kicks her legs. After talking with the orthopedic surgeon, we have decided to leave them alone...no surgery for her. Grace doesn't tolerate surgery well so it is really the last thing that we would want to do. So for now they will just keep a close eye on her hips. The doctor made us feel better about this when he told us that people with dislocated hips can still do everything that anyone else can do...but it may take longer. We are used to that, so for now, no big deal. Grace had a great visit to her genetic doctor. We have known him ever since we found out that would be born with Emanuel Syndrome. He has been there through it all! He was so pleased with how well she is doing. His words "There were many times that we didn't think she would make it. She has come so far." It is always good to see him.

Some Awesome Firsts!

The first week of summer Grace learned to roll from her side to her back! It was a very exciting moment.

Grace also had her first haircut...which only took about 5 minutes, but was very fun for us!

Sitting Pretty

Beautiful girl!

She also has been very busy teething, which is not fun for anyone. She now has three teeth. Two on the bottom and the newest one on top! Yeah Grace!

FUN this Summer:
Grace's favorite thing by far this summer has been going up to my parent's place on the lake. She loves to watch the trees and enjoys swimming in the lake and the pool! Mommy bought her bubbles and she loves watching them. You can tell she is spoiled because now she has about 2 gallons of bubbles!

Happy 4th of July

Swimming in my pool

Uncle Jared, Cousin Mac, and Grace

Grace and Grandpa John at the lake

The summer is far from over and I am sure we will have many more fun adventures!

It's Amazing How People Come Into Our Lives...

2010-03-28T11:48:00.007-05:00

The story about how we found daycare for Grace is one that has changed all of our lives! You see we found our wonderful Grandma Shirley through Craig's List. I had never even used Craig's List before, but was desperate to find someone to take care of our daughter while Beau and I were working. I started looking before Grace was born, and before we knew that Grace would be born with Emanuel Syndrome.

I sent out many emails to different people on the site and heard back from many off them. Shirley was one of them. When I sent her an email, her name was not on her "add" on Craig's list. But when I received her email saying that she was looking for another baby part time I noticed her name. It was so familiar, I knew that name. My mom and mother in-law had both worked for her when she was a principal in Sun Prairie. We met with her and her husband before Grace was born and it was a perfect fit! A huge relief to have someone we knew to take care of our daughter.

Then we found out that Grace would be born with Emanuel Syndrome, Grace was born, and spent 2 months in the hospitals. We had not talked to Shirley about all of the complicated medical challenges that Grace would have until the day we went to her home to have her meet Grace. We were scared that with all of Graces medical needs Shirley might change her mind about taking Grace for daycare. But that is far from what happened!

After telling Shirley and her husband of all that we went through with Grace after birth, and all that Grace's daily care would entail...Shirley still was willing to take her. Shirley is not only Grace's daycare provider, but she is another Grandma to Grace. She loves her just as much as we all do.

Shirley and her husband, Ting have been amazing to Grace and our family! They are much more to us than just daycare, they are like family!

People come into our lives for many reasons, but I truly believe that Shirley and Ting are angels sent from God for our sweet Grace. We just can't say thank you enough to both of you!

We love you Grandma and Papa! Love, Grace

Grace and Grandma Shirley cheering on the Badgers!

Another Diagnoses...

2010-03-28T11:04:00.002-05:00

Our latest trip to the doctor was to the developmental clinic. It was a busy day visiting with OT, PT, and Speech therapists as well as the developmental doctor. It was a hard day as the Dr. gave Grace another "label"... Cerebral Palsy. The hardest part about hearing this is that Cerebral Palsy is NOT a part of Emanuel Syndrome it is something totally separate.

Cerebral Palsy is from a brain injury, which goes back to when Grace was only two weeks old. She had Mandibular Distraction surgery to extend her jaw out because it was so small. During the surgery Grace had to be resuscitated, which led to multiple problems including her kidney failure, seizures, and brain injury. After surgery, the Neurologist told us that they did not know how the brain injury would affect Grace. We were devastated.

We were never really given a clear explanation of why Grace stopped breathing during surgery. There were multiple stories, but to this day, we don’t know the whole story. It was so frustrating knowing that it could have been a mistake on the part of a doctor. I guess mistakes happen, but it should not have happened!

It has always been hard to tell if Grace's developmental delays are from having Emanuel Syndrome, or from her brain injury. I can't help but think what Grace would be like if the surgery complication had not happened. Would she be holding her head up, sitting up...I guess I will never know. It is really hard to just be at peace with it all and to accept what happened!

Our beautiful girl makes it easier, her beautiful smiles are what we need to know that she is happy. Just hard to let go of what could have been...

We were also referred to an orthopedic doctor to look at Grace's spine and hips. He has told us that Grace has scoliosis as well as hip dysplasia. So now we are going to meet with an orthopedic surgeon to see what needs to be done about her hips...another possible surgery :( As for her spine, she may need a back brace, but for the most part they just want to watch it and hope it doesn't get worse!

As for Grace she has had a pretty good winter…saying healthy for the most part. We had one hospital say for RSV, but otherwise way better than last winter! Now that spring is here we are looking forward to spending more time outside and looking forward to summer, when Beau and I are off of work! Oh yeah, and if you know anyone looking for a condo in DeForest, ours is still for sale. We hope to sell soon and move to McFarland where I work. A ranch home would be a dream, that hopefully will come true soon!

Grace's new wheels

2010-01-24T11:00:00.000-06:00

This was a very exciting week for Grace. She got her new Kid Cart Wheelchair. It is a whole new world for her! She really enjoys sitting at the same level as everyone else! Her first outing was out to lunch and to Babies R Us. She loves being out and about in her new chair!

We are planning on doing the Polar Plunge again this year! It is coming up February 20th. If you would like to plunge with us, please sign up on our team…Team Grace. We would love for you to join us. You can also pledge money for a great cause, Special Olympics.

https://www.specialolympicswisconsin.org/pp10/team.asp?id_t=361

About time for an update!!!

2009-12-29T17:25:00.000-06:00

Not sure where my time goes...but I found a little bit of time for an update. Grace is doing so well! She is working so hard with her therapists on holding her head up and communication. They have been doing a lot of supported sitting with her as well as tummy time. She really enjoys sitting and looking around...it's a whole new view when you’re not laying on the floor! She is also working on getting used to her stander. She spends only about 15 minutes at a time in it, but this is a big improvement because she used to hate it! As for communication, Grace has really made some progress. She responds with big smiles to let us know that she thinks something is funny or that she likes it. This melts mommy and daddy's heart every single time (we waited a long time for those smiles!) Her speech therapist is also working on getting Grace to show us when she wants something. This has been pretty amazing. If we stop doing something she likes and she wants more, Grace will kick her legs and sometimes "coo" or make a noise to let us know she wants more. We have also been working on the sign for mommy, daddy, more, and all done. Not sure if she will ever use signing as a form of communication, but it doesn’t hurt to try!

As far as her health goes...her kidneys remain stable, and her blood work is down to every other month! We got some great news from her heart Dr., her last ECHO showed that both of her holes in her heart are now closed! He told us that Grace's heart is no longer a concern, and we no longer have to see him. One less Dr, it was a very great day! Otherwise Grace has been pretty healthy, just colds that we pray don't turn into something bigger. Grace is growing and getting heavier everyday! She now weighs 20 lbs 15 oz! In the 65th percentile for her weight!

Christmas was a lot of fun. Grace LOVES all of the lights. She enjoys doing tummy time in front of the tree, and I have to say, she may be sad when we take it down! She got some new toys that she loves...a monkey from her cousin, that we named Marty the Monkey, a sing along stage from Grandma Kathy, and lots of clothes from Grandma Deb. It has been so nice being home with daddy and Grace this week! Lots of time cuddling with her, it is wonderful. Grace will also be going on her first trip to Wisconsin Dells! We are taking her to Great Wolf Lodge, I hope she likes the water. It should be lots of fun!

Hoping the new year brings more great news for Grace…she is such an amazing girl and has come so far in the last year. We are so proud of her!

Halloween 2009

2009-11-01T08:26:00.000-06:00

Wow, it has been a long time since I have updated! Grace has been doing well and we are keeping our fingers crossed for a healthy winter!

Halloween was very exciting this year, because we were home, and not trick or treating in the hospital like last year! We spent the night with family, which was very nice. Grace enjoyed listening and watching her cousin Mason. He is very funny! We watched Toy Story 2, and Grace watched almost the whole movie!

Of course Grace was a pretty pink princess...no better costume for her! Here are some pictues of all of the fun!

Grace's First Year...pause music below and then press play

2009-09-13T16:52:00.001-05:00

Photo and video editing at www.OneTrueMedia.com

Grace is ONE!

2009-09-07T09:49:00.000-05:00

Hi Everyone,
Today is Grace's first birthday. We wanted to thank all of you for sharing in her life...it has been an amazing journey so far! Your thoughts and prayers have been so comforting. We wanted to share these two things, we have both of them hanging on our fridge. Grace is one amazing little girl, we are so lucky to have her in our lives!

"Why I was Born" Author Unknown...

I was born to learn and love like everyone else. My body is imperfect, but my spirit needs no help. I was born to give to you, with open hand and heart. I'm the strongest soul you know, though I don't look the part.
I was born to teach you hope, faith, and patience, too. I came because no one else can do what I do. So the next time you think of me as broken, damaged, torn, know that I am here to lift you up...
That's why I was born.

WELCOME TO HOLLAND
by Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Thanks for all your support, love, and prayers,
Amanda, Beau, and Grace

1 year ago...

2009-08-25T06:34:00.002-05:00

It was one year ago today, I was in the hospital on bedrest...it had been 2 weeks so far. We got a phone call at 7am from my doctor asking if Beau was with me. She said she wanted to come down and talk to us about the amnio results. We knew right away that something was very wrong. We waited and waited, and while were were waiting we were looking through pregnancy books trying to figure out what it could be. Nothing could have prepared us for what she was about to tell us about our baby girl. She came in after a long time, with the genetics counselor and my nurse (who was amazing). They started talking and it seemed like forever before they said what was wrong......."Your baby has something very wrong, she is mentally retarded..." That was it I don't remember hearing much else. The worst possible thing was just said...the "R" word. Then I remember, "she may not walk, talk, or ever feed herself. She has Emanuel Syndrome. We have never heard of this before, it is very rare." She handed us some sheets she printed of the internet...yes they didn't have any handouts from the hospital nothing...just from the internet.

They told me I could go home until Grace was born. They didn't need me to stay at the hospital, they wanted me to be with my family at home. The C-Section that was planned that same week was canceled. Both my doctors felt it was important to let my body go into labor naturally, so Grace and I both had the best chance, even though she was breech. Really I wanted to keep the C-Section...lets just get her out, I needed to hold her to see if she would be ok, no more waiting around!

Our families came to the hospital and we packed our things up and left. I couldn't believe this was happening to me. At this point we really didn't even know if Grace would be born alive, or would live long after birth. To be honest, after all we were told we didn't know if we wanted her to be ok after she was born, we didn't want her to have to suffer and have a hard life. So many emotions went through our head. We tried to look information up on the internet, but it was all to much, to horrible to imagine our baby not being healthy. It was like loosing a baby, a baby who was supposed to be healthy and would grow up talking and walking...all of the things kids are supposed to do. We had some difficult decisions to make.

We had a meeting with the doctors at the hospital where Grace would be born. We had to make sure everyone knew what was going on and what we wanted during my labor and after Grace was born. We asked not to have me monitored during labor, we didn't want to know if Grace didn't have a heartbeat, that would be way to hard to handle during that time. We also asked that she not be resuscitated or a breathing tube be placed if she was not breathing on her own. I felt like a horrible mother saying these things, it was a very difficult decision for Beau and I to make.

I was so worried about giving birth because Grace was breech, coming out butt first. But she was small and both of my doctors thought it would be best for me, and an easier recovery with all that I was going through. Two weeks later, Grace decided to maker her entrance. It was an exciting but scary time in the delivery room. I was pretty quiet, worried about the birth and what would happen after with Grace.

All went well, Grace was born, I had no complications and it was great! She was so pale and not responding right away. They cleaned her up and she opened her eyes so big. She needed to be taken to the NICU, but was breathing on her own.

There were many tests done and yes there were things that were wrong, but I had my little girl...and that is all that mattered.

It was all very hard, a nightmare, something I would never wish upon anyone. But the truth is, I would do it all again. In a second. I would go through all of the hurt and pain to have my Grace. She is truly amazing!

Why Can't Life Just be Easy...

2009-07-24T13:34:00.002-05:00

Not sure what is going on with me these past few days, I just find myself so sad. As Grace gets closer to her first birthday I can't help but look back at the last year and think of where we were a year ago. I was going through an up and down pregnancy, getting bad news weekly it seemed. Then to find out Grace would not be born healthy...it was a nightmare. But that was only the beginning...we spent months at her bedside wondering if she would be strong enough to pull through all of the crap she had to go through. Finally at two months old, she came home, and what should have been a wonderful day was not, because I was so scared...how would we do all of this...take care of her all by ourselves. Feeding tubes, more than 8 different meds...and if that wasn't enough stress, Grace had terrible colic. She cried day and night non stop, it was not a fun beginning. But the hardest thing is not any of the medical things...it's what comes with the idea of turning one. Walking, talking, sippy cups...and Grace is far from this. Yes, I know that she may never do some of the things that other kids can do, but that just doesn't make it any easier. Things are still not easy today, but are much better, 100 times better. Grace is smiling and "talking" now more than she is crying. She is working so hard on holding her head up. You just can't help but stare at her in amazement and smile. We enjoy all that she can do and love her so much. So sorry I went on and on, but I feel better now. Sometimes I just with life could be easier...not for me, but for my sweet Grace.

10 Months Old Already!

2009-07-08T18:14:00.002-05:00

Grace is now 10 months old, we just can't believe how fast time has gone. She is getting so big and has done so many new things in the last month. She is now about 18pounds, getting so heavy. Everyone comments on her rolls. We love them! Grace's 9th month has definitely been the best yet. She has started eating baby food by mouth. Even though she doesn't take much, she does a great job with it. She loves sweet potatoes the best! Grace lifted her head for the first time during tummy time. She likes tummy time a lot more too. We hope it won't be long until she has more head control. Grace has been working very hard on keeping her head up. She has become a much better sleeper, only waking once on a good night. She has also become a fan of the rocking chair, and we don't have to bounce her so often on the exercise ball (Thank God!) No teeth yet, but it won't be long now. We can see one on the top and one on the bottom. This teething thing has not been fun for Grace or mom and dad. Her reflux seems worse because she is drooling more, which really sucks. I feel so bad for her when she is throwing up...she hates it! She definitely recognizes her mom and dad. She will watch us when we walk by and smile when we do something funny. This has been one of the most exciting things. It is so nice to see her smiling so much more. We are so excited and proud of all the progress Grace is making. We look forward to celebrating many more new things that Grace will be able to do...

Grace, you are such a fighter. You work so hard and have come so far. We love you baby girl!
Mommy and Daddy

A fun 4th

2009-07-08T18:07:00.003-05:00

We had a fun 4th of July weekend. We went to Grace's first parade...she only lasted about 5 minutes and then fell asleep. We went over to our neighbors for a cookout. We also went up to Lake George camping at my parents trailer. Grace had her first dip in the lake and enjoyed it for a little while.

Grace's Morning Talk...So Happy

2009-07-02T08:39:00.004-05:00

Grace was having a lot of fun this morning...(Pause the music below to watch)

Grace's morning talk...

Fun in the Sun

2009-06-27T17:26:00.005-05:00

Today we went to a friend's pool. It was Grace's first pool experience and she loved it! We put her in her raft and she spent most of the time just floating around. By the end of the day she was pretty tired. I can't wait to take her swimming again soon!

Look at me...two firsts!

2009-06-03T18:06:00.006-05:00

It has been an amazing week for Grace...today being the most exciting! I had my first taste of food last week...rice cereal, sweet potatoes, peas, and applesauce. I have been eating a little each day. Mom and Dad are so excited and so surprised with how well I am doing so far. We will just take it slow. I'm not eating a lot, but enjoy tasting new things!

Today I had my PT and Speech therapy. I worked on rolling over with a lot of help and tummy time. I am really enjoying tummy time now. My PT, Sue put my arms up a little closer to my body than I am used to...and then I did it...I held my head up for the first time! My mom and dad were so excited. I didn't just do it once...I did it 3 times and held it up for awhile! So exciting! My therapists also brought me a new chair to use, and I love it.

What a day! We are so proud of you Grace!

An Exciting Dr. Appt...

2009-05-26T14:31:00.003-05:00

Today we took Grace to her renal appointment, to check in with her doctor about her kidneys. Her doctor was very pleased with how she is doing...she is growing and gaining weight which is very important for Grace. She now weighs 16 lbs 8 ozs. This is great considering that every time she gets a cold (which seems like every other week) she can't seem to hold down her food. Her kidneys are also stable and have been for many months now. They are still only functioning at 25 %, but they are stable! Her doctor also gave us the OK to start some solid foods with her. We just have to record what she eats and be careful not to give her foods with too much potassium. I am so excited, I can hardly wait to get home and try some cereal with her! We were not sure Grace would be able to have any solid foods because of her renal failure and strict diet, so we were so happy to get the go ahead! I don't have my hopes too high, as Grace does not do well with things her her mouth (bottle, nuk...) she tends to gag, so we will just start very slow and see how she does! Also, her Dr. told us that kids with renal failure tend to not be very good eaters and not very good at taking things orally. This may be true for Grace, but I am just excited to try, and if it doesn't work...Oh Well! I will let you all know how it goes!

An Article about Grace

2009-05-12T14:28:00.001-05:00

This article was written about Grace!
http://cambridgeenews.com/main.asp?SectionID=2&SubSectionID=135&ArticleID=1502

Enjoy!

'Hope for Grace' a hit - Lifestyle

2009-05-12T13:28:00.000-05:00

'Hope for Grace' a hit - Lifestyle

Here is an article about the benefit that UW-Whitewater had for Grace. We appreciate all that they have done for our family!

Busy Busy

2009-05-03T18:04:00.006-05:00

No time to blog lately, but finally a little time while the little lady is sleeping! We have had an exciting couple of weeks. UW-Whitewater had a sand volleyball tournament benefit for Grace "Hope for Grace". It was a lot of fun and it was a beautiful day! We appreciate all of their support!

Grace also got her first ear infection. She had tubes put in her ears when she was two weeks old and they have been working great until now. She is not feeling well and not getting much sleep at all. I am hoping the meds kick in soon and hopefully in a couple of days things will be better.

Grace is getting her hearing aid on Thursday and I am so excited. I hope she doesn't hate it! I also hope it makes a difference for her.

Today Grace had her first trip to Lake George. My parents have a trailer on the lake there. I grew up with my parents taking me there every weekend, starting when I was only a week old! It was a special day taking Grace there today. Hopefully it will warm up soon and then we will be able to go swimming and for a walk!

Grace will be 8 months old soon, where does time go? Here are some 7 month pictures:

Home and Doing Well

2009-04-20T11:49:00.006-05:00

So with lack of sleep I haven't had time to update...We got home from the hospital last Wednesday afternoon. Grace had the worst night ever (sleep wise) last Tuesday night (while still in the hospital)...we got 3-4 hours of sleep, she just couldn't fall asleep! The good news was that she was feeling better, just couldn't sleep. Finally at 6 am she feel asleep. Then I heard her fussing at 7 and couldn't believe she was already up. When I looked a Doctor was by her AHHHHHH! We had had enough so when the pediatrician said, "What do you think, are you ready to go home or do you feel more comfortable staying one more day," the choice was easy...I couldn't get the words out fast enough...HOME! The grandma's stayed through the day on Wednesday so mom could get some sleep, poor dad had to work! The last few nights were much better. We all got some sleep and feel a little better. Grandma Kathy stayed home with Grace the rest of the last week so mom and dad could finally made it back to work.

Last Friday Grace had an appointment to get her ear mold for her hearing aid. We are pretty excited. It was a long wait for medicaid to approve it (over a month of waiting), but now we can finally go ahead with the ear mold. She should get her hearing aid in 2 weeks. Mom got to pick out the color which was fun, pink with pink glitter. I really hope Grace likes pink because she doesn't get much of a say...mom loves it and that is the way it is! We hope it helps and hope she doesn't hate it too much!

Other news...we got the report back from one of Grace's therapist. She did an evaluation before Grace had gotten sick to see the progress she has made since she came home from the hospital in November (she was 2 months old). Developmentally Grace is at 2-3 months, even though she is now 7 1/2 months old. It is hard to hear, but we know that Grace will be behind other kids her age. It is hardest when we are around other babies Grace's age...your mind naturally wonders thinking Grace should be doing those things. But we take one day at a time and are so happy with all of the things that Grace can do. We are so proud of how far she has come since we brought her home at 2 months old in November. We have seen huge improvements in the last 5 months...she is much calmer and is able to calm herself when she is upset. She is also babbling non-stop...she has so many stories to tell. She will give us little smiles and I cry nearly every time she does! She is working at holding her head up and is getting better. And new this week...Grace started tummy time and doesn't mind it too much! YEAH! We are so proud of Grace for all she can do and continue to get excited for every little thing she learns!

So for now...thank you for all of the prayers.

Not Home Yet

2009-04-13T21:49:00.001-05:00

We have not made it home yet as things got worse before they got better. We had a terrible night; Grace was up crying nonstop. She was so miserable and there was nothing we could do to help her. She finally fell asleep around 5 this morning. We are all so tired. She was coughing nonstop and was just exhausted. This morning was bad too, but now she seems to be doing a little better. She is still on oxygen, but really only needs it when she is sleeping. We are in no rush to leave; we feel more comfortable being here with the Doctors when she is this sick. They have now called this sickness RSV which we hope she never gets again. I told Beau we are not ever going to let anyone near her...maybe that way she will stay healthy :). We are thankful that Grandma Kathy could come up today and take care of Grace while Beau and I got some sleep. We also got to go out for dinner while Grandma and Grandpa Harbort stayed with Grace. Grace had her first tornado drill tonight too...you have got to be kidding all the kids had to go into the hallway. Grace was sleeping until that happened! Hope tonight is better! We have a great nurse tonight and are thankful for that!

Not So Happy Easter

2009-04-12T15:01:00.003-05:00

Poor Grace...it seems that whenever a holiday comes around we are at the hospital. Halloween, Thanksgiving, a couple weeks before Christmas, and now we find ourselves here again on Easter. The last four days or so Grace has been battling another cold. I spent some time at home last week taking care of her but things got worse on Friday and we took Grace into her pediatrician. He diagnosed her with bronchiolitis. He prescribed steroids to help and said things should get better. But things only got worse and Grace's cough was so bad that she would turn bright red almost purple and not be able to catch her breath. We took her to the ER yesterday and spent 5 hours there until they admitted Grace to the hospital. She got their attention fast when she had a coughing fit and was having a hard time breathing. The first assessment was that Grace had pneumonia. I was terrified knowing that for kids with Emanuel Syndrome...this could be very serious. After coming up to the room different doctors took a look and think that her x-ray does not show pneumonia...they felt it looked more like RSV, because the symptoms get worse before they get better...but that test has come back negative. She had also had the RSV shots to help prevent RSV... So for now she seems to be a little better and the plan is to get her off of the oxygen today and go home tomorrow. The Easter Bunny did bring a basket to the hospital with candy for mom and dad, and a book, sleep sack, and little lamb for Grace. The hospital is always so great! I also hear that the "grandma and grandpa bunny" stopped at our house and left a surprise! Grandma Kathy and Papa Tim came back from their vacation in Florida and brought Grace the cutest princess outfit and sweater...she will look so cute in it! Mom and Dad's friends...Pete and Jenna brought candy for mom and dad and a cute bunny for Grace...so thoughtful! So it has been a pretty nice day after all, but still can't wait to get home and for Gracie to feel better! Hope everyone has a great Easter.

Hip Hip Horray, I am 7 Months Old Today!

2009-04-07T19:14:00.012-05:00

I can't believe that Grace is 7 months old...time flies! To bad she was sick with a cold. Mommy got to stay home with her and is glad she is feeling a little better. Grace is doing a few new things. She is constantly babbling which is so fun to hear and watch! She continues to work on holding up her head...and today she even laid on her tummy and lifted it up for a short time. She used to hate her tummy time! Sleeping has some sort of pattern...usually. She gets to sleep by 10 and then is up by 1am. Awake for an hour or two. Then up around 4 or 5. So we do get some sleep. Car rides are better! She has learned to fall asleep which makes for a much more relaxing ride. Although Grace still loves to bounce on her exercise ball...we don't have to use it much anymore. We usually bounce her to sleep, she still won't fall asleep on her own yet. Grace loves bath time! We are looking forward the weather warming up so that we can take her swimming! Grace is concentrating on people more and watches us when we walk by or walk away from her. She is also starting to act like she wants to roll over...arching her back and raising her arm way up...so cute! Take a look at Grace's new bib mommy got her...so true!

Dear Grace,

You have been through so much in your short little life. You are such a fighter. There have been some very hard days but mommy always said...life gets much better. We are so happy that you are finally able to enjoy being here with us...you are our angel! Happy 7 months! We are so proud of everything that you can do and we love you!

Love,

Mommy and Daddy

A Wonderful Weekend

2009-04-05T18:06:00.003-05:00

We had a fun weekend. It was Grace's cousin Mason's 1st birthday. We had to drive to Menomonee Falls for the party. If you know Grace, you know that the car is one of her least favorite things. But lately, around 5 months, Grace has changed. She is doing much better on her car rides. But we were still worried because this ride was going to be about an hour and a half! AHHHHHHH. We are excited to report that Grace had no tears...NONE. She slept and looked all around both ways. It was so exciting for us! She sure has come a long way. That was not the only exciting thing that happened! Grace doesn't smile too often, so when she does it is very exciting. Grandma Great caught a smile on her camera! It was so great. What a fun

day!

Spring Break for Grace and Mommy

2009-03-28T14:39:00.003-05:00

Well it is spring break and we are staying home. Hope to get some rest! We were supposed to spend this week in the hospital for Grace's surgery for her malrotation in her intestines, but we have decided against the surgery since we got some new news about her kidneys...We found out last week that Grace's kidneys are only functioning at 25% and another hit would be a disaster. It was a hard and tearful week for Beau and I, as we know that at some point we may be faced with some very difficult decisions. For now Grace is stable and just needs to continue gaining weight. We enjoy everyday and take one day at a time, trying not to look too far ahead. Grace is 6 and a half months old and now weighs 14 lbs. 6 oz. Getting to be such a big girl! She is much happier and doesn't need so much attention from mom and dad. She enjoys laying on the floor kicking and looking around. She has gotten a lot better at riding in the car and even falls asleep now! Nights are still not too good. It takes a long time to get her to sleep, then when she wakes up, she may be up for 3 hours AHHHHHH. Hopefully this will get better soon! Hope to add some new pictures of the little lady soon!

Grace's Story

2009-03-17T13:17:00.026-05:00

The day we found out we were pregnant was the happiest day of our lives, but following a very eventful and scary pregnancy we got terrible news. While I was on bed rest at the hospital we found out that our daughter would be born with Emanuel Syndrome. Here is her story...

The Day We Found Out:
Even though I had been in the hospital on bed rest due to low amniotic fluid, it was to be an exciting week. It was Monday and in a few days...Thursday our Doctor had scheduled a C-Section because Grace was breach. We had done an amnio 2 weeks before for some piece of mind because there were so many complications during my pregnancy. During this time is when I was admitted to the hospital, I had low amniotic fluid. The results came back a few days later...everything was normal! We were so relieved, even though our doctor told us the full results wouldn't be in for 2 weeks, but that the tests that come later are problems that are very rare. Well 2 weeks later our doctor called down to our room in the hospital. It was very early around 7am or so. She had asked if Beau had left for work yet, when I said no, she told us she wanted to talk to us about our results. My heart sank. I knew something was wrong and while waiting for the doctor we went through all of my pregnancy books looking for what it might be. It seemed like forever when the doctor and a genetics counselor walked into the room. Our nurse also sat with us. They told us that they tests came back and there was something very wrong. All I remember hearing were the words "your daughter will be mentally retarded (I HATE that word!), may not walk and talk..." They told us most babies that have Emanuel Syndrome miscarry and that they had never seen this before. That there were only 200 or so documented cases. They were not even sure if Grace would survive after she was born. I lost it and the rest is a blur. It was like losing our child we had hoped for. Our dreams of a healthy girl were gone. Your mind goes right to the future...no sports, no college, no hearing your baby say MaMa, or DaDa... It was the worst day of our lives. After the doctors left we just felt lost. They told me I could go home because they now know why I was having so many problems. They wanted us to have time to be with our families. My doctors both (high risk and OBGYN) advised me that even though Grace was breach, she was small and for my health they thought I should have a vaginal birth. The thought of this scared me! I just wanted to keep with the plan of the C-Section. No more waiting around. Let's just have her and find out if she is ok or not. Looking back I am so thankful that I listened to my doctors advice! We went home. Beau and I talked about everything. We tried to look up information, but turned the computer off because it was all too hard to handle. We went through every emotion. We were thankful to find out the news before Grace made her entrance to the world. It gave us time to comprehend what might happen and how our lives were about to change. Looking to our faith, but not knowing what we should pray for, finally we put it in God's hand...whatever his plan...that is what would happen.

She is Here:
Before Grace arrived we spent some time talking to the Genetics doctor, my doctors, the NICU team and I am not sure who else. We came up with a plan, it was the hardest decision Beau and I had ever made in our lives. If Grace was born and needed resuscitation, and had to be on a breathing tube...we just wanted to let her go and comfort her and hold her and enjoy the short amount of time we had. To even say these words crushed me...I felt like a terrible mother and just hoped Grace couldn't hear all that Beau and I had talked about in the past weeks! Otherwise we would just take a day at a time and see what happened. The day came on September 7th. We went into the hospital at around 3pm and Grace made her entrance at 9:21pm. There were so many mixed feelings waiting for her to come. I was excited and terrified. I had her and she came out butt first! She was very pale and not making a sound so they took her right away to do an assessment. I was praying the whole time for her to be ok. I couldn't see what was going on but Beau was with her. It took a second and then I heard a cry. I remember Beau's smile saying, "her eyes are wide open". I was relived. I got to hold her for a shot time before they took her to the NICU. Later the doctors came in to tell us that so far she was doing fine. She was on a very little bit of nasal oxygen and that was it. He told us that she had a very small jaw and a cleft palate, also called Pierre Robin ...they would do more tests in the morning to see what other problems there may be. We got to go down to the NICU to see her and spend a little time with her. It was so sad to leave her there...I just wanted her to come back to the hospital room with us.

The Day of Tests:
The following day Grace was so busy. She had many tests done and to tell you the truth I can't recall them all. The information that we got after the tests were all over was that for the most part all of her organs were fine. She had some heart abnormalities including an ASD, VSD, left Superior Vena Cava. We couldn't believe the good news, FINALLY! Another problem was that Grace was not able to take much for food from her bottle. They ended up putting a NG-Tube in her nose to help her take more. We continued to try and bottle/breast feed her, but it wasn't working. She would also make choking sounds while eating and get very upset. We decided with the doctor's advice to have a G-Tube placed in Grace's stomach. This way we could take her home and continue working on her bottle feeding. The same day we had decided on this surgery, a plastic surgeon came to see Grace's palate and small jaw. At first she wasn't too concerned because she wasn't having any "blue" spells and seemed to be breathing just fine. Then she watched her struggle to take a bottle and a very concerned look came over her face. She told us that she thought Grace should be transferred to the American Family Children's Hospital in Madison, WI right away to have her jaw lengthened.

Grace's Jaw Surgery:
The surgery was called "Mandibular Distraction". During the surgery the doctor would make two small fractures on both sides of Grace's jaw. Then she would put in the distractors (screws that turn to lengthen the jaw). Twice or three times a day for about a week they would turn the screws and Grace's body would make more and more bone...lengthening her jaw. During this time Grace would be in the hospital (about 10 days) and she would be on a ventilator most of the time. It all sounded so awful, she was only 2 weeks old. When she explained what could happen to Grace if she didn't have the surgery, we knew we had to have it done right away. The G-Tube surgery was canceled for now. After two weeks in the NICU Grace was transferred to the PICU at the Children's Hospital and the surgery was scheduled for the next day. The surgery was on September 24, 2008. The surgery did not go as planned! Grace came up from surgery, she was so pale and swollen. We felt so bad. Then the doctor told us what happened. Near the end of the surgery something (we have heard two different stories) happened in the operating room and Grace's heart rate dropped. They had to to CPR to get her heart to beat normally again. When they told us about this the first question was what will be the result from her lack of oxygen during this time? The told us that it was such a short amount of time that they didn't believe there would be any complications. Boy were they wrong!

Grace's Kidneys Shut Down:
In the next few days the doctors realized that Grace was not producing any urine. They told us that during the complication in surgery her kidneys took a hit and were not working. We just had to wait and hope they would come back. It was a long wait. Each day standing by her bed staring at her catheter hoping for pee. A little came but it wasn't enough. Grace's little body was swelling up with fluid due to the toxins that her kidneys could not get rid of. It was horrible. They couldn't wait any longer and hoped that putting her on dialysis would help her kidneys. She went back down to surgery on September 26, 2008 and the doctor put in a catheter that was too big for her...because they didn't have any small enough to fit Grace...babies usually don't need dialysis! We were crushed, scarred. We didn't want her to have to go through all of this and the thought went through our minds of how much is too much for Grace to handle. We couldn't imagine her having to be a dialysis the rest of her life. Luckily Grace only had to be on dialysis for 10 days and they they turned it off and Grace was able to stay stable on her own. Her kidneys are still not healed, but stable for now.

Seizures Start:
As if this wasn't enough, Grace also started having seizures. She had two seizures that we could see, but the others were going on and we didn't even know it. Seizures can be a part of Emanuel Syndrome, but in Grace's case, this too was all due to the surgery and lack of oxygen to her brain. Doctors started seizure meds which seemed to take care of Grace's seizures. Grace had a continuous EEG for about a week. I couldn't wait to get all of the glue out of her hair! When they felt the seizures were under control the took the leads off and did an MRI to look at Grace's brain. We met with the neurologists about her MRI, they found that she has a small cerebellum, which is related to Emanuel Syndrome. He told us that it may or may not cause some motor difficulties...but this is not any new news to us. They also noticed some areas that were injured due to her surgery...they may get better with time and he just wants to watch these. A second MRI would show that Grace had some severe brain damage from surgery and the neurologist was not sure what the outlook would be for her developmentally. So she had two strikes against her; brain damage and Emanuel Syndrome.

The Ventilator Comes out,Then Goes Back In:
After two weeks of a machine breathing for her, the doctors felt Grace was ready to try on her own. The ventilator was scheduled to come out at 11am. It would be the first time in 2 weeks that Beau and I would get to hold her. I couldn't wait. After it was finally out we held her all day, but something didn't seem quite right. She seemed very uncomfortable, but the nurse assured us that it was just because she was not used to breathing on her own. When the doctor came in, he immediately had a concerned look on his face. He had blood drawn and the results were not good. Her oxygen levels in her blood were so bad that the room filled with doctors and nurses to quickly put Grace back on a ventilator. We were standing in the corner of the room. Suddenly alarms were going off and we could see Grace's oxygen dropping. It was the scariest moment...which seemed like forever. We found out that she had a collapsed lung. Finally they got the tube in and she was breathing much easier! We felt lucky we got to hold her for a short time, but now had to wait until she was strong enough to breathe on her own. It was another week and they tried to take the tube out again. This time it was successful, but the doctors put her on C-Pap just to help her out a little. Grace hated it. It wasn't long until I took matters into my own hands and tore that thing right off! She was fine and didn't need any more help! HA, sometimes mother knows best!

Getting Better:
Once Grace was able to breathe on her own things slowly got better. She had one last surgery to place her G-Tube and take out her dialysis catheter. After spending her first 2 months in the hospital, Grace finally got to go home. It was an exciting, but scary day. Grace came home with her G-Tube and used a feeding pump, which we just needed to get used to. She also had a lot of medicine that we had to give her twice a day, including a shot that we still give her once a week. It only took a few days and we had the hang of it!