Lily is touring Kindergarten!

Tomorrow Lily and her classmates who are graduating get to go on a field trip to the kindergarten! They will be met by peers who are in kindergarten now who will show them the ropes and show them around! I just found out that the teacher who everyone recommended to me will be Lily's K teacher next year! I am soooooooo excited! I am so hopeful about Lily's future and so happy that God placed us here in DeWitt at the last minute possible! That God sure does have a sense of humor always putting me in his place at the last second possible! Wondering if my dad has any influence on the big man up there, because that would be my dad's sense of humor! Anyway, I am thankful! So thankful for Lily, for Dustin, for my family, for my life and am so very hopeful. Life is truly a great place!

Many many prayers still said for the George family. This has hit harder for home for me than anyone and my heart still breaks for them. Prayers Joanie, Paul and family. No words can express how sorry all of us in the T21 community are feeling for your loss. May God be with you.

Life is so fragile.... I will cherish the life I have and the people who are in it. I pray God will always help me to hold this truth!

Bless you all~

Holding my little girl ever so tightly....

Seems there have been so many deaths around me this year.... And sadly a little girl whom I did not know, but who had Down syndrome like Lily, passed very unexectedly, very suddenly. Although I don't know the family, my heart still breaks for them. I held Lily more than I already normally do - which believe me is ALOT! But, sometimes we wake up and realize that we don't get to choose our time and life holds no guarantees for any of us. I worry all the time about me leaving Lily here way too soon and I know I can't worry about things like that for I will never get to fully live. But, I pray to God everyday to let me and Lily have a long life together. I am sure that is what everyone wants I know. I guess all I can do is enjoy every second of every day and make the most of it. Just sometimes when you hear of so many things that just don't make sense - like an 8 year old dying, like my mom who has stage IV cancer breaking her arm while trying to caregive for my brother who has MS and is wheelchair bound and getting worse - sometimes I want to know why is life so unfair????? I have faith and I believe in God, but I want to know that the people who deserve the good things will get them - not too much to ask for....

I hope that I can blog more..... Lily is getting ready to transition to Kindergarten and I can't believe it. So much to write about.... But, for now..... May God be with the family who lost their beautiful little girl who was so full of life and had the brighteset smile in the world....

May you rest in peace sweet Carly! I pray for your strength for your family as they grieve for you.... No words can express the sadness that is felt all over by such a tragic loss. Please keep this family in your prayers!

Happy New Year's Everyone!!!

Wow, where do I even begin??? 2009 has brought so many good things in my life as well as many losses and bad news. It has been a year of triumphs in my life and sadness as well. I cannot even begin to imagine what 2010 will bring as I am afraid of the lives that may be lost. 2009 brought me so many blessings it truly did! I moved out of Scott's house and into my own house in DeWitt. I was blessed with an incredible new career and beautiful new house. Lily and I have enjoyed being back together in our own space again. We lost our great friend Deb who lost her battle with cancer in May - she will always be missed. She had a way about her that was just full of life. Anyone who knew Deb knew they had been blessed - she lived life to the fullest always and never knew a stranger. There is a void in so many people's lives with her gone. Over the summer my mom was diagnosed with stage IV breast cancer. She is still fighting the beast and I am so amazed and inspired by her strength. I love her so much and it is so tough to be so far away from her! I am having a tough time with this.....

Lily is doing amazing. She has been sick here and there, but have managed to keep her out of the hospital for almost 3 years knock on wood please!!!! She was just diagnosed with asthma - it has been coming for a long long time. So, something we have to deal with.

Well, I am promising to write more and fill you in on our year! But, for now, I should spend this time with my family! Hugs to you all! Happy New Year's to you all!!!!!

Gifts 2

I just recently received my copy of the Gifts 2 book... I cannot begin to express how honored I am to be a part of such an amazing, inspiring book! I hsve been so blessed since having Lily in my life that I can only hope others out there who are just facing this journey or just finding out they have a prenatal diagnosis will be inspired to choose this journey! I know firsthand how devastating it can be when first finding out, but I know once you get past this you realize what a blessing this truly is... I hope to reach out to anyone and everyone and make a difference. Anyone out there reading this just facing this please feel free to contact me and I will surely mentor anyone as others have done in the past for me.

I will surely miss A and S when I leave this place and move on to my next journey. I hope I have made a positive impact on them and we will still see eachother often! I love them both so much and it will be weird to not have them around!!!

So, go out and buy the Gifts 2 book - it is a truly amazing book that should inspire all!!!

Talk about some Magical Miracles....

Quite a few months ago, I prayed to God that he would guide me to the direction I should be taking with my life. Not just any direction in life, but the one he wanted, the one that would fulfill my need for a career and my need to move on from here. Well, God answered my prayers. While I did not get the original job I had hoped for, I did indeed get an even better one! One that could not have been more made for me if I had tried! I am so blessed!!!! I thank God for blessing me and bringing great things in my life and giving me the ability to trust in him that what was presented to me was what he wanted me to have, where he wanted me to go and how he wanted me to fulfill my destiny.

Although, I will be sad to leave Scott and the girls, I am also excited about my future and then next part of my life! I accepted a job offer last week that is so amazing! I will be working for the State of MI through Children's Special Health Care Services as a trainer/outreach liason to the health depts, educational system, advocacy groups and even medical professionals. I will be out there speaking to people and educating them on all of the programs and scholarships that are offered through CSHCS! I feel so lucky to have landed such an incredible job here in MI when so many peop;le are out of work.... So, needless to say Lily and I are moving!

I have been blessed to be here for the last two years for Scott and the girls when we all needed eachother most. Yet, it is time to move on and I am so excited to be back in m own place with my own stuff and free to do what I want to do! Don't get e wrong - it has been wonderful here, but it will also be really wonderful to just have me and Lily in our own space! It will be a good thing all the way around for everone!!!!

More to write, but, I am sooooooooooooooooo tired!!!! I promise to write more!

Updarte post Sophia's T&A and Lily's ABR

Sophia did incredible, I really cannot believe how great she did... Once we got past the first week she was great! I really think she has such a high pain tolerance though, Scott thinks so too and said Anne was the same. But, we kept up with her pain meds like everyone recommended and I am sure that helped. She and Lily were kept home today though due to I think they are both getting colds, although by the way they were bouncing off the walls tonight, one would never know!!!!!

Last week was Lily's ck up with ENT post ABR and we were to get her new hearing aid for the left ear. Unfortunately, we did not get it. Her ENT first came in and checked and said that both of her ears were clear and open meaning that most likely her moderate hearing loss in left ear is due to some type of defect in her ear that she was born with. So, instead of starting her back using the new aid, he wanted to do a CT of temporal bone and said that if it is a defect he feels he can surgically rebuild or correct it and that she has a great possibility of hearing normally. We went for CT on Wednesday and am awaiting results. A part of me hopes it is something that can be corrected surgically, although I know it is not going to be just a 10 minute surgery and they will have to make an incision along the bone behind the ear. But, gosh I hate it that she may have to have another surgery as well! The dr. at the hospital where we had the CT was very uneasy about sedating her without intubation, due to the DS, small airways, previous possible asthma, pneumonia and lung issues - to the point that I was so scared once I said let's do it I cried! I understand the issues and I guess I am happy they were more cautious than less.

Lily's teacher has said since the new tubes her speech is just amazing! We have too noticed it and are so excited! She is so cute as anytime she does something she isn't supposed to she says "I sorry mommy!" melts my heart everytime! Also, has just started going to the potty all by herself, in fact got so mad at me when I opened the door the other day and yelled at me "I go potty" GO mommy! I guess she might have learned something like that from me when she has busted in on me and I have frantically yelled to close the door! LOL!

John McGinley speaks out against the "R" word...