Saturday, March 21, 2009

Update....


Hello Everyone,

We are so glad to be home! Things are going well, although I am quite exhausted with 2 little boys. Thankfully, I have a wonderful husband that takes the weekend shift, allowing me to sleep some. Josiah has been a great big brother and loves to look in on Isaiah.

Ever since our meeting with the doctors last Friday, Isaiah has been eating regularly, according to the schedule they set up. He has been gaining weight as he should. His primary pediatrician was excited about his progress, and says his NG tube can come out in a week if he continues to gain weight. What she doesn't know is I already pulled it out because we haven't had to use it. I'll put it back in only if he needs it.

We have had wonderful support from everyone, and everyday we are amazed. It's been rather amazing to be in the presence of a present day miracle. Chris and I truly believe our little man was healed of the diagnosis of Trisomy 18. We can only attribute that to everyone's prayers. Matthew 7:7-8 says, "Ask, and it shall be given you; seek, and ye shall find; knock, and it shall be opened unto you: For every one that asketh receiveth; and he that seeketh findeth: and to him that knocketh it shall be opened." We asked for healing, and God granted the impossible ("For with God, all things are possible," Matthew 19:26). Isaiah is truly what his name means, "The Lord saves."

Isaiah 65:23-24 says,
"23. They shall not labour in vain, nor bring forth for trouble; for they are the seed of the blessed of the LORD, and their offspring with them.
24. And it shall come to pass, that before they call, I will answer; and while they are yet speaking, I will hear." The Lord knows our needs before we even ask for them. We have seen this multiple times through this journey so far. We have been given so much without asking for a single thing from anyone. This is the Lord working. He puts it in the hearts of others to help.

Our next year is busy and we would like everyone to pray for strength and safety. This week starts our weekly trips to the satellite office of CHOP in Chalfont or to the main campus of CHOP in Philly. I will be making most of these trips alone, sometimes with both boys. I know this will be hard on all of us, but worth it in the long run. Once we have all the appointments scheduled, I will list the dates that we will need help watching Josiah. We would like people to come to our house to watch Josiah, because it will be too much running for me to drop him off somewhere and then drive to Philly.

Thank you again to all who have provided meals, gas cards, diapers, and gift cards. A big thank you to my brothers and sisters-in-law for cleaning and decorating our home, and to our neighbors for cleaning our house. It was so nice to come home to a clean smelling/looking house. Thanks to my fabulous Aunt Liz and Uncle Bruce for all the groceries! Also a big thank you goes to my mother-in-law, Viviane, and sister-in-law, Amy, for helping me take care of the boys during the week. Everyone has helped to make our lives easier, and for that we will be forever grateful. We are trying to thank everyone individually by email or by phone calls, but we know we may not get to everyone. Please forgive us if we forget to call or write.

Our main prayer requests are as follows:
1. Safety to and from doctors appointments.
2. That Isaiah and Josiah continue to stay healthy and grow up to be men of God.
3. That Chris's job remains stable. We completely depend on his income and health insurance.
4. We really want this whole amazing journey to be used of God and to see lives transformed, including ours.

God bless, and enjoy the pictures!

(Left to right, top to bottom)
1. Getting ready to go home.
2. We're leaving. YEAH!!!!
3. My first night in my bed at home.
4. Getting to know my big brother.
5. Josiah seeing if Isaiah is awake to play.
6. Cuddle time with Daddy.













8 comments:

  1. What a beautiful little boy. And such an amazing miracle. :-)

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  2. My name is Tiffany, My service coordinator from MARC (Cathy) gave me your blog today. I started at the beginning and read all the way through - crying the whole time! Your dependence on God is remarkable! God is getting the Glory! I am guessing we live somewhat close by if you are getting services through MARC as well. My son’s (short story) is here http://www.josiahntiffany.com/testimony_Dillon.html
    If you would like to talk more my email is tiffanykuenzi@gmail.com and my phone is 610.737.5965. Your story has been such a blessing/encouragement/challenge to me! Our special little boys CAN bring God so much Glory!

    (The day you got to go home, we also left CHOP - but Dillon was only in for a week this time. We usually have a week or so stay every couple of months...too bad we didn't know each other while we were down there!)

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  3. Oh Joy! He's beautiful! And he's home...I am not one to actually say PRAISE JESUS out loud b/c it's usually just not me to say that (I am more of an inward type person), but PRAISE JESUS!!!!!!!!!! What a miracle Isaiah is! I am soo soo soo very happy for you all! YAY!!!!!!!!! We'll keep praying though that he gets stronger every day. What a blessing, Joy. I can't say it enough! =)

    <3, Jennifer (Mengel) Fanucci

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  4. Joy, We will be in prayer for you all as well. My wife and I both work at Univ of Penn. I tried to find you a while back from friends as Bible Baptist in West Chester but couldn't find you. WE live in Media and go to Chadds Ford Baptist Church. Pastor Griffiths Son in Law. It's a great church. Would love to meet up with you guys. Love to hear about what you are up to.
    Christopher MacKay
    cmackayrn@gmail.com
    also on Facebook

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  5. Hello, We have a baby girl that was born 9 months ago with Trisomy 18. They told us she was going to die and we rushed her home with hospice care to say goodbye. Well she is still here and doing well. It has not been easy and I am still having trouble dealing with it but I love her just like my other children. She is now off hospice care and we want to start having her testing at CHOP. We need any advice you may have for us. This has to be the most difficult thing we ever experienced in our lives. Thank you, Michele

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  6. Here is my email address that I forgot to leave you. Michele (chelbear@aol.com

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  7. This comment has been removed by the author.

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  8. Hello again, I just noticed that we live very close. We are in Jamison, PA. Hope your little miracle is doing well. Look forward to hearing from you. Michele

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