Thursday, December 31, 2009

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!!!!!

Saturday, September 26, 2009

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!!!

Wednesday, September 16, 2009

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!

Friday, March 27, 2009

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!

Friday, March 6, 2009

A little rough spot, but doing great again!

Sophia had a rough spot, probably brought on by an iv that was leaking and causing her pain, but she is doing great again and is such a tough little girl! Just wanted to share one of my favorite pics of her and Lily!

Thanks for the prayers!



She is already done!!! And did great! Everything went smooth and her dad should get to see her in 45 minutes or so!

I am going to see her this afternoon, so will update you then!

Thanks for the prayers!


Sophia is having T & A today....

So, if you could spare lots of prayers we would surely appreciate it! Her dad said they just took her back and it should be about an hour long. He said she was just smiling and happy when they took her back. Gotta love Sophia! Lily always goes screaming, but guess that is why she is alive today because of all that fight! I will update as soon as possible.

Lily also had ear tube replacement Wednesday and they did a sedated ABR as well. She was under alot longer than I thought about 2 1/2 hours, but she did well. The results of her hearing are right ear normal and left ear moderate hearing loss. Also, she did not have any fluid in either ear, so that should not have affected it. They made a new mold for her left ear and I guess when it is done she will wear one hearing aid! There is a possibility that it is a defect of the middle ear and she could have reconstructive surgery so she could here normal. But, we have to do a CT first, so I guess that is nenxt!



Saturday, February 28, 2009

Friday, February 27, 2009

Once upon a time I shed tears about a day I thought would never come....

it was June 2004 and in one way it seems like a billion years ago while the next it feels like only yesterday. I was sitting in between Dustin and my sister Sue and we were at Melissa's (my neice from my sister Sue) dance recital. I was just almost 20 weeks pregnant and following a 1:10 risk of my baby having Down syndrome I had just had an amniocentisis. I was most excited as I had found out my baby was a little girl - I had always hoped someday after my son was born that I would have a little girl and I could not have been happier. And although I knew no matter what I would not terminate, I surely had not come to terms at that point nor did I want my daughter to have Down syndrome. And all of a sudden all of these beautiful little girls dressed in full ballerina costume came out on stage and my heart just fell, like a ton of bricks weighing me down heavier than I had ever felt. It was at that moment that tears just started streaming down my face as I realized if my daughter did indeed have Down syndrome, then I would never get to see her dance on that stage or any stage like that. It broke my heart in a million pieces as that was the one thing I was so excited about having a little girl. And I just knew if she did have Down syndrome she would never be able to dance.....

Here I am in 2009 and amazed by all that I thought Lily would never do..... Tomorrow is a huge day in not only Lily's life, but in my life as well. Tomorrow is the first day of Lily's first dance class! Yes, Lily is going to dance! And I have to tell you when we went to the studio to sign her up, she was more than mad that she was not going to dance that day! I know come tomorrow Lily is going to dance her heart out! Now she may pitch a fit leaving, but she is going to dance nonetheless!!!! Looking back I can't believe I thought she would never dance, but then again there was so much I did not know and that is ok. I did not know Lily then and all that she would become. I just want others to know out there that may not know yet either, that the possibilities are endless. That our children are only limited by our own limits that we naively believe. Lily has amazed me in so many ways, she is so much more like normal than different. Sometimes it is almost surreal to go back and see what I believed before I had Lily. Not that it is bad - I just believe that until you are there you truly cannot possibly understand. Which may be why I have more tolerance for ignorance than some people. But, I do know until you have walked in shoes that you have never walked in - how could you truly know what those shoes might feel like?

Tomorrow is a glorious day! Just yesterday she was in the hospital and tomorrow she dances.... Who could ever ask for more?