Wait where did 2012 Go!

Wow what a year 2012 has been! Its so hard for me to wrap my mind around its 2013. Its been so long since I have updated my blog, but I am going to try and be better this year.  
I Hope:)

Joseph is doing amazing, we saw Dr Miller in September and he got rave reviews. He amazes me everyday. He is talking and trying to walk, but we have a long way to go. I can not even begin to describe the love I have for this little guy. I truly have no words.

Jacob is becoming a little man. Joseph and him have a special bond. I see it in their eyes when they hang out together. I love to sit back and watch these 2 and the love they have as brothers and friends.

Joshua well he is still my stinker but I am so proud of him. I watch him with his friends and new people he meets and I will hear him say "DO you have Jesus in your Heart" then he proceeds to tell them how you can have Jesus in your heart like he does. I know God is going to use this little boy to do great things!

Ella Bella well what can I say she is a true princess. Wow she keeps me on my toes. I love this little girl so much. Its so fun to have a little girl to do girly things with!

As we closed 2012 and I looked back on things, I thanked God for my amazing family. It also made be realize that ever since Joseph was born I have truly had a reality check on whats important. Him being diagnosed with Prader Willi rocked my world and my heart like never before. It also made me realize I am stronger then I ever thought I would and could be. I have made some amazing friends through this journey, with doctors, nurses, therapist, and some amazing moms! This community of Prader Willi parents is nothing I have ever seen. From the moment Joseph was diagnosed I was rallied around by other moms who were on this journey with me. There are so many of these Moms I have never met, but we call, text, facebook and we have a special bond. 
These Prader Willi Moms are part of my new family. A family I did not choose to be in, but one I am blessed to be a part of..

Angela XXOO

How can it be that the summer is over and the new school year has begun! Jacob and Joshua I am so very proud of you both. You are such sweet boys (even though Jacob you do not like me calling you sweet) but you are. You both have brought so much joy to my life and I feel so blessed to be your mom.

You two were so excited this morning to start this new year. It makes my heart full that that you enjoy your school. I love that you can go to school a couple days a week and then the other days you are home with me. I love being your teacher as well and I have to admit I am learning quite a bit along the way:)

Jacob its soooo hard for me to think of you in 2nd Grade! Where did my baby go! You are becoming such a wonderful little man. I love you with all my heart!

Joshua, you are in KINDERGARTEN! Joshua you are growing up way to FAST! Thanks for letting me be your mom! I love you to the moon and back.

Jacob and Joshua when you look back on your school years the one thing I hope you always remember is how much I love you and enjoy every moment with you. ( ok when you two are not fighting with each other:)

All My Love,
Mom xxoo

                                                                     Where did my babies go?

                                                                                 All Grown up!

What a difference a year makes!

Its hard to believe a year ago I was taking Joseph to see Dr. Miller in Florida. It all seems like so long ago, yet I can remember everything about the trip. I remember the way I felt as I got on the plane just Joseph and I.  He was so tiny and all I kept thinking was, I got you sweetie and we will fight this together. I remember how I would have him sleep on me so I could take in every breath he took, praying over him every moment I could. I remember also that peace, peace deep in my soul that we would be ok.

Dr. Miller is amazing and she let me see Prader Willi in COMPLETELY different eyes.. Joseph will learn to walk and talk, he will go to school, he will get married, he will have an amazing life .  I know all these things will not be easy but he will do them in his time with us cheering for him every step of the way.

I think many times when things are going well in our lives we put God last on our priorities.. I know I did, I was just going through life! Yes my faith is strong, but I know I did not always put God first. I let life get in the way.
When all this was going on last year I never questioned my faith, what I questioned was why did it take Joseph getting diagnosed with Prader Willi for me to put  God first again.. The biggest lesson I have learned this year is to constantly lean on God for everything.  I will cry out to him in time of needs, but also daily thank him for all my blessings.

Trust in the LORD with all your heart and lean not on your own understanding... Proverbs 3:5

What a difference a year makes!

 

Well not much new on our end! Kids are enjoying the summer in the pool and being with friends.. Joseph is doing great, he is saying Momma and he repeats NO:) haha little stinker.. Ella has been my partner this summer taking Joseph to therapy and keeping me company. Its been fun to be able to spend that time talking to her. She is one smart cookie and so much fun.. Oh and she is starting to have a little Diva come out:) Life is good we are blessed! xxoo

Sorry? No! Blessed? Yes!

I get quite a few people say "I am so sorry you are going through all this with Joseph" I have to be honest YES its been hard but I just can not imagine my life without him. I just know God is going to use my little love bug for amazing things. My kids are better for having a little brother with Prader Willi. They are learning to sacrifice, to rejoice when he accomplishes a task and pray like we have never prayed before for him to be healed. I don't want anyone to ever feel sorry for me or us.. In a way I feel sorry for them, the love we have for Joseph is like nothing I have ever felt. I put my fears to the side and don't take no for an answer. If a doctor says he can't do something my goal in life is to prove them wrong. I don't set limits on what he can do, I know I serve an amazing God who can make anything possible. Joseph is a blessing, a gift, he has helped me to be such a better person and for that I am grateful!

Back on Track!

Well I am one worn out Momma:) I just can't seem to get back into the swing of things after our week in St. Louis:) Boys have been in VBS all week and having a blast and Miss Ella has been my parter in crime taking Joseph's to therapy and shopping.. woohoo.. It has been a hot couple of days so we have enjoyed spending our afternoons in the pool, grilling and enjoying our summer. I am one blessed Mom of some amazing kids.. My heart overflows for these little ones.

xxoo

Well 2 of the kids are down and out with Strep! Yuck! Ella I could tell something was wrong, but Joseph he was just more quiet.. That is one thing that really scares me about Prader Willi, they have a hard time controlling body temp so when they do have a fever you should be worried... Lovely. Usually if they have a fever then its usually higher then what it states..Wonderful:) haha... I had the other kids in for their Yearly Well check and just asked her to check Joseph and he came up positive for Strep.. Poor little man, they gave him a shot to knock it out because we did not want him to go downhill quickly.. So my little pumpkins are resting and hopefully will be better soon...

Speech

Well sweet Joseph we are back home and jumping back into all your therapies! You are such a hard worker and I am so proud of you. We had speech therapy and you are so cute and Miss Rebecca loves you. She even texted me last week when we were out of town to see how her Joseph was..You are already a ladies man:) You are doing so great in therapy, Miss Rebecca said because of your low muscle tone it will just take you a little longer. You forget what all is a muscle and how we take it for granted. You are getting stronger and stronger and I know pretty soon you will be talking a mile a minute.. I love you to the moon and back! Mom xxoo

Happy Belated Birthday Post!

Jacob, Joshua and Ella, this post should of been written on your birthdays but your mom is kind of behind.. hahaha story of my life lately. I wanted to let you all know how much I love you! I know this last year has been hard on you with all the therapies and doctor appointments I have had to take Joseph on. You never complain, just say "mom you are leaving again for another appt" and give me that extra hug I needed to get me through the day. Jacob ummm you are 8.. Wow, when did you grow up! Where did my baby go.. You amaze me all the time with that brain of yours haha..That totally came from your Dad! You are a hard worker and I appreciate all the help that you give me with your brothers and sister. Joseph is your buddy, you can make him belly laugh like no other.. You are the go with the flow kind of kid and that has been so helpful this year. I am so proud of the boy you have become, I get emails and calls all the time from people letting me know how thoughtful you are. I love you Jacob and its hard for me to see you grow up so quickly. I remember when you were 1 and you and I would play Thomas the train for hours! Where does the time go sweet boy.. I love you sooooo much! Joshua its so hard for me to believe you are 6. You did amazing in school this year AMAZING! You are so cute you will ask people, "Do you believe in God" I love, love your faith.. I watch you go and lay hands on Joseph and pray for God to heal him of Prader Willi.. Joshua you have the sweetest little heart. You are my wild man but that is what makes you, you and so very special! I love you Joshua with all my heart! Ella, or as you say my name is "Ella Bagella". You are my princess, I love you little lady! Its hard to think you turned 3! I love being your Mom! You keep me on my toes and make me giggle. You are my Target buddy, the boys do not appreciate shopping like you and I do:) Ella you are a beautiful girl, and I love when you tell me "Mom I need a big hug and kiss" and that "you love me." I love you baby girl I love you all so much and I am so blessed to be your mom! Mom xxoo

Joining Together for Joseph

Wow what a weekend! JoeJoe you are loved loved! Our 1st Joining Together for Joseph Fundraiser was a success sweet boy. We raised $10,000 for The Foundation for Prader Willi Research! Yaaaa.. Joseph you are such a joy and my heart overflows with love for you. Your brothers and sisters are the best thing that has ever happened to me.. (well besides your dad of course:) You are a fighter and God will use you for great things. You have so many people that love you and support you and our family. When you were first diagnosed I was so scared and sad. I would lay with you sleeping on me just to hold you and pray over you. God knew what he was doing when he gave you to us:) I needed you Joseph you have changed my life for the better. Yes there are many times I feel like I have hit a wall and I can't take you to another therapy, then I realize Gosh Joseph is actually doing the therapies. You are a hard worker little man. I know there are days you are worn out but you just keep going! I am so proud of you! I love you little man! Love Mom

Joseph's 1st birthday

One year ago sweet Joseph you were born. What a year it has been ..You are the sweetest little boy and I can not imagine my life without you. You have taught me to be a better mother and to cherish every moment with you and your brothers and sister. Jacob adores you he will wake up in the mornings and find you and I always hear him say.."how is my little buddy this morning." Joshua loves to help you to learn knew things, he will sit and read to you and show you pictures and help you point to each of them.. he prays for you every night for God to heal your chromosomes.. His love for the Lord is contagious.. Ella calls you her JOJO and she means business.. Its so cute she will share her blanket with you when we are driving in the car. She loves you!!! Your Dad is amazing Joseph, he is the rock in our family, each night I see him kneel by your bed and pray for you. Joseph we are blessed that you are our son and I do not know what is up ahead on this journey and I can not promise it will be easy, but it is OUR journery together and you will never be alone. I love you to the moon and back:) Love, Mom

Sweet Joseph

Well this post is definately overdue.. umm about 7 months to be exact...

Joseph I love you with all my heart. The time you were in the NICU was probably the hardest, yet most peaceful time in my life. I was so scared yet had this overwhelming peace that God was going to take care of you and no matter what would be there with us. When we finally got the diagnosis of Prader Willi my heart broke, but the overwhelming peace was still there.

I had doctors tell me one thing about the syndrome but a voice inside me was telling me they were going to be blown away at our little boy:) Mr Joseph, you are blowing their socks off, God has used you to open so many people's eyes. God totally opened an amazing door for us regarding a doctor in Florida who tells us the opposite of what the original doctors told us. She knows you are special and wonderful just like we do. You are a true amazing gift to us and I will move mountains for you to make sure that nobody tells you you won't do something. Thats mans eye not Gods.

I do not know what the future holds and I know this road may be hard at times, but you will never ever be on it alone. Your dad and I love you so much, Jacob, Joshua and Ella adore you. God has big plans for you!