We have a scooter on our hands!

For the past couple of weeks Maddie has been scooting ALL over the place. That is her way of getting around and I am amazed at how she rocks her body back and forth to get around. One other new obsession she has is strings. I have had to stop wearing sweatshirts with strings because if I take it away or leave the room she flips out. The little things that intrigue her are hilarious! She is doing more and more each day and it such a blessing to see her figure things out! Here is a picture of Maddie on her new mat. You would be amazed how she scoots her little body all around this.Many times she scoots off the mat right into our bedroom. She is so happy that she has figured out way to get around and it is so cute! We Couldn't be more proud of her. I also wanted to let you know she will be getting a new prosthetic on wednesday. The RIC was able to make something much better, so I will post some pictures next week. In the meantime, we wanted to wish you a HAPPY NEW YEAR!!!!!!!!!
We are thankful to ring in the New Year at home and not in the hopsital room, which was the case last year. What a difference a year can make!!!!!! WAHOOO!

Maddie has learned how to go from a lying position to sitting position!

I wanted to post this video to show you how determined this little girl is. She amazes us everyday! We are SO proud of her, and her determination will get her VERY far in life! GO MADDIE!

"ALL I WANT FOR CHRISTMAS IS MY TWO FRONT TEETH, MY TWO FRONT TEETH, MY TWO FRONT TEETH..."

Madeline's first tooth came threw last week just in time for Christmas! Lots of sleepless nights for all of us, but cute to see a little white tooth!!We are so excited for Christmas this year and will be spending it will my Mom's side of the family. A much different Christmas than last year, and we are so thankful to have Maddie with us this Christmas. Much uncertainty last year at this time. I hope you ALL have a VERY MERRY CHRISTMAS!!!!

A Tree, Some Tea, and Two Little Miracles

Maddie in her party wear
The beautiful tree at the Drake HotelMaddie and Anneleise enjoying their tea:o) They were NICU friends across from each other at the hospital. We Mom's really connected and have stayed in touch. Now we are making this a holiday tradition with our girls:o)All of us together. A much better venue than the NICU:o)Our tea time has come to an end. See you next year!!!!!

We have such a joyful little girl, and she is the most special thing in the world. "Bye, bye, prosthetic," She says....At the Sheraton Downtown. She loved this Christmas tree!So mesmerized by all the different textures of the ornaments.

A few more updates on this process...
We have been back and forth, back and forth, with the RIC over e-mails. We have put our foot down and we are not going to put this thing on her. Bob has been great handling this process and looking out for his little girl. I am not sure yet if we will have to wait 8 months, or if we can somehow get them to not bill our insurance since we are going to bring it back. This seems to be a bit of a battle, but we are standing our ground and looking out for what is best for Madeline. She has been fine without it, so if there is something better we will try it, and continue to seek guidance.

Bob and I are VERY passionate about this, and if there are ways to better inform parents of children with limb differences, we will do what we can to get the word out. It is unfortunate we weren't aware of pediatric prosthetis, who exclusively specialize in upper limbs. But now we know, and will use our knowledge for the better.

Lots of updates this week...

If you would be interested in seeing a video of a myoelectric prosthetic on a 2 1/2 year old please copy and paste the link:

http://www.kidscanplay.com/DVD.mpg

This is the place in Houston, TX where Linda Bean is the leading specialist in pediatric prosthetics. In 18 months she made 600 upper limb prosthetics!

Bob and I are a quite disappointed with the prosthetic she currently has, so he is going tomorrow to see if he can "return" the prosthetic. Highly doubtful, but never say never. We thought it would be worth a try otherwise we have to wait 8 months until the insurance company will pay for another one. The cost of a myoelectric is $30,000. Will keep you updated as we work through this process.

On a lighter note, I wanted to see how much the prosthetic weighed, so this morning I headed over to the local marketplace and placed her arm in the scale. I weighed the hand (it screws off), then her arm, and then the whole thing together. I hope no one saw me because they probably thought I was a crazy lady. I guess you will do anything for your child! :o)

Well, I think that's all for now! Thanks you everyone for your Facebook Messages, phone calls, and emails. You are all so encouraging and supportive.

A God sent when I was feeling discouraged

We are thankful that Maddie could get her first prosthetic, but haven't been quite sure if there might be something better for her situation. As I was crying and a bit emotional this morning, I was talking to my mom on the phone telling her my concerns about the prosthetic. It seems heavy, bulky, and I have mixed emotions about it. And the fact that Maddie starts to cry now when I put it on her, SO not worth it! It shouldn't be this uncomfortable, and I will not put her through that.

So after I got off the phone, my mom ended up talking to this women, Linda Bean, in Houston TX who specializes in pediatric prosthesis. She found her on the internet. They are so much lighter in weight, not so bulky, they match your babies skin color, and are also myoelectric, which is amazing! Light weight, under a pound, and they can actually learn to open and close the hand in 2 days. WOW! I feel so much more encouraged than I have felt and that was such a God sent. They are based in Houston and make the prosthetic in one day, which is truly amazing. I have been researching their website for a few hours reading and watching the videos. So we continue to research what else is out there, and pray that Maddie will one day be able to make use of her left arm on her own. We wouldn't be eligible for another one for 6-8 months, but this gives us time to pray and research, and talk to other Mom's who have taken their babies there. I just wanted to keep you updated on the process and tell you where we are at...

The stories Linda was telling me where truly inspiring. What a rewarding job. I also have a couple of Mom's to call who have children with prosthetics from this facility.

If you think of us, please continue to pray for the Lord to guide this situation and that we would seek him in our decision making. I feel much more hopeful than I did this morning. Thanks again for keeping up with Madeline. It means a lot!

Pictures of Maddie's new arm:o)

I love in this picture how she was just studying her arm.Seeing how she did on her tummy:o) Maddie holding her favorite friend Sophie, the giraffe. We don't go anywhere without Sophie.When we got home we practiced a few things. She was so well balanced leaning on the chair. I put a watch on her arm so that she would be more aware of it:o)It was so cute how she could hold herself up with both arms.

Tomorrow is the Day!

Tomorrow we head back to the RIC where Madeline will have her last fitting and will be able to take her prosthesis home. We are still unsure of how she will react to it, but we are looking forward to what she be able to do with it. Madeline's P.T. had recently took a trip there so she would be educated during her PT sessions. She was very encouraging. She saw a video of a little boy who had the same length of arm as Maddie and the baby was able to crawl with his prosthetic. (I also recently had a dream 2 weeks ago of her crawling) That was so encouraging to hear, and we are praying Maddie will be able to do the same thing! She wants to GET GOING SO BADLY! It would be so AWESOME if this would help her move better. We would be so thankful if this would be beneficial to her. I will have more updates for you in the next couple of of days:o)

Thanksgiving Weekend

Maddie Girl is always smilingShe loves to carry things. Here she is carrying a bag of rolls.The next day she picked up my grandma's 5 pound purse and pulled it up as if she was doing a bicep curl. I tell ya, that right arm is VERY strong!Maddie got a lot of love from her uncles this weekend.
A little dazed after the turkey dinner...even though she didn't eat any:o)

Thanksgiving

I hope you all have a HAPPY THANKSGIVING! It was easy for me to think about what I was thankful for this year. Maddie is such a blessing to our lives. I am thankful to the Lord for working many miracles in her life, and creating such a beautiful little girl inside and out.

Psalm 100:1-5

"Make a joyful noise unto the LORD, all ye lands.
Serve the LORD with gladness: come before his presence with singing.
Know ye that the LORD he is God: it is he that hath made us, and not we ourselves; we are his people, and the sheep of his pasture.
Enter into his gates with thanksgiving, and into his courts with praise: be thankful unto him, and bless his name.
For the LORD is good; his mercy is everlasting; and his truth endureth to all generations."

Video Of Cutting Edge Prosthetic Arm

My Mom recently found this you tube video and had me watch it yesterday. The Rehabilitation Institute in Chicago is driving this, which is the place Maddie has been going for all her prosthetic fittings. Seeing this video encouraged us for the future, so Maddie has options if she would want a prosthesis or not. The link is below: You will have to copy and paste the link to watch.

http://www.youtube.com/watch?v=T6R5bm6qx2E

A Few Pictures of Maddie Girl
with the same toy, I can lye downPractice my Standing
And sit:o)Maddie is doing new things each day. She is actually starting to take steps. It is uncoordinated, but she wants to get going!

Second prosthetic Fitting/NICU follow-up appt

This morning we headed to the RIC for Maddie's second fitting. They had bits and pieces of the prosthetic done, so we could get an idea of how it will would fit and look like. We saw all the different positions the prosthetic could be placed in for Maddie to use it. Below is a "rough draft" of how the prosthetic will look. It's being held together by tape, which won't be the case when we take it home:o) The cable that you see sticking up will be much shorter, but that will allow us to lock her arm in many positions. Right now the arm is a clear material, but will either be made flesh colored or I could do some kind of a fun fabric. The arm will fit around her shoulder and will strap around her chest. You won't see all the metal, but most will be covered when the arm is finished. The hand right now looks a little bigger than her other hand, but they do that so there is room for her to grow. Mainly this will be a device used to help her with all the daily activities that babies do. Will help her balance, stand up on furniture, and scoot or crawl. I am not sure she will crawl, but I did have a dream 2 nights ago that she was crawling. That was pretty neat and feel so much peace that she will in some way figure out how to do everything! God has been right there through all of this giving me all these encouraging dreams about Madeline. We will take her arm home the monday after Thanksgiving!

So right after the fitting I walked across the street to the 680 building for Maddie's NICU follow up appointment. She was evaluated for her cognitive, motor, and verbal skills. I was thrilled to hear she was in the average range or ahead of average for all! She was able to see her P.T Elizabeth, from the NICU, who we just loved and she loved Maddie. She worked with Maddie twice a week in while in the hospital and was just thrilled with how well she was doing. So Thank you Lord. Just to hear that she is ahead and right where she should be was music to my ears. WAY TO GO MADDIE! Here is a picture with Maddie and Nurse Elnora. Elnora has been there for all our appointments, and it had been a LONG time since we had seen her, so good to see her again! I was glad we were there today for a follow up and not an eye exam. Thank goodness those kind are over! She will need a follow up eye exam when she is 12 months, but just praying they aren't like the ones she had before. Those gave me BIG anxiety. I don't have any right to complain though because those doctors are on top of everything. We couldn't have had a better experience those 3 months and everything to follow up until now. We are so thankful for Northwestern hospital, and all the WONDERFUL Doctors, nurses, neonatologists, O.T, P.T's, and Prosthetists! Thank you!
1 Thessalonians 5:16-18 " Be Joyful always;pray continually; give thanks in all circumstances, For this is God's will for you in Christ Jesus." Amen.

A Year Ago Today

About this time last year we were headed in for our ultrasound to find out if we were having a boy or a girl. We were very excited to find out! We arrived into the room and they started to check all the measurements and make sure everything looked healthy. I remember feeling a pit in my stomach when the tech looked very concerned looking at the screen. I remember asking is something wrong? She said, "I can't seem to find part of her left arm?" I remember us thinking that can't be and it must just be hiding. At that point I just thought they had missed it. Then that tech went and got the head of the U/S dept and she said that our baby girl was missing part of her left arm. Something called amniotic band syndrome. I didn't even understand what she was saying and we were in total shock. I felt this is so unfair it was supposed to be a happy day finding out the gender of our baby and my joy was totally stolen from me. They left us alone for a bit to process what they had just told us. Bob began to pray as I was balling and so confused why this happened. I remember like it was yesterday.

They brought us in another room to meet with our OB and started explaining what they thought caused this. I don't even remember what she said, but I do remember her saying in the state of IL you are able to terminate up to 23 1/2 weeks if you don't want your baby. I couldn't believe what I was hearing. We said absolutely we would never do that, but in my head wishing my baby had all her limbs, and all these fears started floading my mind- How would she do things with one arm? Would I love her differently? how would people look at her? Will she date and one day get married? my mind was racing with fear wanting to already protect her. We were both so scared and fearful.

After 4-6 weeks of grieving I was coming to grips with the fact this was how God made her-Perfect. Maybe not our version of perfect, but God kept telling me I don't make mistakes just trust me. All we could do was wait and trust that God has a big plan for Madeline. 6 weeks after we found out about her arm I went into pre-term labor. In the hospital for 3 weeks, there was so much uncertainty and a chance of a possible still birth. Maddie came 3 months early at 2 pounds 1 oz, and amazed us from the moment she was born. Fighting her way through the NICU, working so hard to stay alive, she has amazed us ever since. We cannot imagine life without Madeline. All those fears I had a year ago have turned into joy and excitement for the things she will do and is already doing.

If you are grieving or going through something that seems difficult or impossible, God is there to help you every step of the way. His plan is WAY better than ours, and is perfect. God didn't promise an easy rode, but uses those hard times for us to draw near to him because he loves us that much. Luke 1:37 "For nothing is impossible with God."

Prosthetic Approved by our Insurance!

If anyone was praying for approval thank you so much! I received a call from the RIC last week and we were approved by our insurance company and are ready for the next steps. Maddie has an appointment on November 11th for another fitting. We won't get to take her arm home this day, but will have to go back then again for a discharge appointment. I think it has been interesting how she has started to use her left foot to bring things toward her. It's almost like she knows there is supposed to be something on her left side. She is already learning to compensate. It will be interesting to see how she reacts to the prosthetic once she gets it. I seriously am filled with excitement to see all the things she is going to do!

As someone recently told me, "Two arms are over-rated." Everyone has been so encouraging and so supportive! We are going to teach Maddie she can do absolutely do anything she puts her mind to. I trust the Lord is already using her life as a testimony.

Here is a picture of how strong Maddie is getting. She reached onto my parents kitchen island and grabbed this heavy pumkin right off. I think she was a little shocked herself:o)

Strawberry Kisses

Maddie was a strawberry shortcake for Halloween:o)
Excited to start trick or treating and meet some of our neighbors!Maddie quickly learned that Halloween was all about candy:o)All girls love chocolate, right?!

Life of a baby

I love to eat as you can tell by how much I have grown! I was eating blueberries and apples here and I licked the bowl clean-literally.Mmmmmmmm! I love to play with my toys, and look around at everything. I like to splash in the water and get all fresh and clean!!!

Madeline's Prosthetic Fitting!

Hi Everyone, 

I had been thinking of ways to keep everyone updated who was on our carepage list, and this was the best way I could think of.  The Title- "Fearfully And Wonderfully Made" is from a verse in the Bible, and this was how I thought of Madeline before she was born after finding out about her arm. She is truly wonderfully made in the image of God.  I have never been a huge fan of blogs, but this was an easy way to explain the progress that Maddie is making and all the new advances to come- E.G. her prosthetic! YAY!!!

Today we took a trip to the Rehabilitation Institute of Chicago for Madeline's appointment. She was evaluated by a team of O.T.'s, P.T.'s, and Doctors. They were absolutely amazed at how well she is doing and said she is way advanced! Thank you Lord! So, after the evaluation process, we headed upstairs to the prosthetic lab where they would cast her little arm with plaster. She was smiling the whole time and thought the plaster was her lunch! So, now we wait for everything to clear with our insurance, and praying that in a month or month and a half Maddie will have her new arm! We picked everything out today- As far as what it will do, look like, and so on...

It is truly amazing what they can do there at the RIC! Thank you for continuing to show interest in Madeline, and I will do my best to keep you updated this way! 

1 Corinthians 12:9 Says, " "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me.

Just arriving at the RIC excited about her prosthesis!
Getting evaluated by Dr. Gabler
Casting her arm and smiling away!
All done:o)