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Friday, January 20, 2012

Michael Update 5 (O2 and Hearing!)

Daniel, Nicky and Levi: Play Day! 
Michael passed his hearing test today with a SMALL Nuk.
I dropped off Daniel and Nicky with their friends Levi and Jade around noon (thanks Joel and Chelsea!) and headed down to see Sarah and Michael.  The audiologists got him all patched up for his hearing test, which evidently you can sleep through when you're 8 days old.  He passed with flying colors.  We learned that people with DS often have Eustachian tubes that are horizontal and not angled and are therefore more prone to ear infections.  Daniel had a million and Nicky had zero...so time will tell.  His blood-oxygen level was much better too, so his pulse-ox monitor was removed from his foot, enabling Sarah to wrap him up a little better.  One less thing that he's plugged into.  And he's eating like a champ still.  Keep in mind, he's currently at 5lbs 2 oz...1 oz away from where he was at birth, but he was down to 4lb 15oz...so this is an improvement. 
Whatever, Dad. 
Our long time friends, Howard and Cherie (Papa Howie and Gramma Cherie to our boys) who lead our church's children's program came by to visit and brought a packet of cards that all the kids made Wednesday evening, welcoming Michael to our world.  They were adorable to read and pretty entertaining to see the personalities match the cards.  We had some good laughs. 

Sarah and I shared a quick meal from Panera, then I kissed half of my family goodbye and headed home for the other half.  I sat in Pittsburgh traffic, which I enjoy for some reason, and listened to K-LOVE, blessed by the words of friends and singing along with their songs.   Well, I listened driving up hills, I lose reception driving downhill when leaving the city because my motorized antenna is broken. :/
Nicky fell asleep on the drive home. Tired and at peace.
Tough times are inevitable.  Being surrounded by love in the meanwhile (especially love that is responding to God's love) makes all the difference.  I'm truly a blessed man. 

36 comments:

Emma McGarity said...

LOVE the "Whatever Dad" photo. :)

What encouraging news that Michael is passing by those milestones. He'll be ready to join you at home in no time!

Definitely encouraging that his O2 sats are good and they felt comfortable removing the monitor.

cara said...

I love your last statement- it is SO true. Praying for your entire family right now. Michael is such a blessing. He is precious.

Krista said...

So glad to hear he is doing well. It's gets better everyday. God grants us the grace we need in the moment we need it. Blessings.

Jenni said...

Your godly perspective and Christ-like attitude are a true testimony to who you are and what you believe. God will reward your faith in him and you and your family will be blessed. Prayers from our family to yours.

stephanie said...

Michael is doing so well!!! He is just beautiful! All you boys are!

Keeping you and your family in my prayers.

Susan Allgood said...

You are blessed!! And you bless so many more than you'll ever know with your extraordinary faith and humility. Keep figthing that good fight!!! God bless Michael. his Mom & Dad and brothers too!!!

one_plustwins said...

Love the pictures and updated, Aaron. Thank you for sharing them all with us.

kzangus said...

You and your family are such a blessing, Aaron. Every time the Lord brings you to mind I pray for your family. Michael is absolutely adorable!!! God is so good! I know He has wonderful plans for you and your family.

kim said...

Michael is beautiful! He'll be home before you know it. One thing I learned with my son: just because kids/people with DS are more prone to ear infections or whatever, doesn't mean anything. Other than a few ear infections (Justin also got ear tubes when he was little), he's the healthiest one in our family! We're praying for him and your family up here in Rochester, NY :)

Denise said...

Sending love and support today. I am the grandparent of a beautiful 4-year-old boy Cooper. He has had a tough journey but is a testament to being a fighter with DS. He has captured all of our hearts and taught us many life's lessons. Praying for your little miracle boy today and always.

Denise said...

http://www.facebook.com/photo.php?fbid=229348853814017&set=a.109753715773532.17594.108593962556174&type=1&ref=nf

I hope you can see this picture. Thought of your perfect little "crayon". Also, I follow Boston DS program for new info

Linnea said...

I just found your blog. I love your music. Congrats on your beautiful baby boy. My husband and I have 5 kids one with trisomy 8 adopted at 3 months old. He has taught us so much in his short 2 yrs here on earth. He is doing so well! God is healing him daily. So much so we have decided to adopt a child ages 2-5 with down syndrome. We are very excited at this adventure God has us on. I recommend you read the book "Gifts" great book that every parent of a child with DS recommended to us. Also there is a new book...only 1.99 on kindle if you have a kindle I would love to buy it for you as a gift here is the link http://www.amazon.com/Dreams-Change-ebook/dp/B006Z2RBE0/ref=sr_1_8?ie=UTF8&qid=1326959523&sr=8-8

Its called Dreams Change. Check out all kinds of blogs they help so much. Thank you for all you do and God really picked the best people to raise Michael. Hugs to you and your wife. Your son is so beautiful. Praying for y'all. Be blessed

Ashlee
http://ourjourneytoadoption.beckfamily143.com/

Braden/Cayman said...

Forgive me, A friend recommended your blog for reasons which will soon be obvious. My son was also diagnosed with down syndrome abot 3 months ago. I wanted to HIGHLY encourage you to a website called einstein_syndrome. I would encourage you to read through when you have a good chunk of time because their is a wealth of resources, information and references. I am so thankful I found it and I cannot begin to tell you how helpful it has been. Hope you find it just as helpful!

Kayla Henretty-Sniezek said...

We are so happy to hear that Michael is doing better. We will continue to pray for God's touch on your little miracle and pray that he and Sarah can come home soon!!! Your baby is an incredible blessing and I hope that people at Children's will continue to see God's light shine through Michalel and Sarah

Jill said...

You really have no idea what is about to happen to your family.
If you thought you loved your wife before, just wait. If you thought you loved your kids, just wait. If you thought you were a fierce protector, provider, man of God....just wait.
You have never loved, cried, embraced, called out or surrendered like you will in the months and years ahead.
I wish I could go back to those precious days you are living right now!
And yet, I wouldn't trade my days for any in the world.
If a magic pill could take Ds away, I would run screaming the other direction.

Tara said...

Wow! So impressed about being so close to his birth weight. It took my youngest 2 MONTHS to reach her birth weight and she's not my kid with Down syndrome.

Glad you're feeling the love, both IRL and in cyber land. :)

Unknown said...

I am so glad to hear the encouraging news about Michael. I will continue to pray for him and for his family. I pray that you will all be together soon. Thank you so much for the updates. It is wonderful to follow this little miracle. God has great plans. That is why He puts his angels here on earth. -Kris

Emilee Kaye said...

Hhmmm. He is good. Keep singin' praises!

Melody Joy King said...

God laid it on my heart to share my latest blog with you in hopes that it will be an encouragement and blessing to your soul. Love and prayers to you and yours today Brother! If you just click on my name above (in blue) it will take you right to my blog.

ed said...

Aaron,

Thank you for your updates, it's an honor to follow your family's progress. I don't know if you are familiar with the old hymn "It Is Well" but it has come to mind as I read your updates. If you're not familiar with it here's the story behind it http://biblestudycharts.com/A_Daily_Hymn.html. and if you would like to hear it here's a YouTube clip of it http://www.youtube.com/watch?v=T8_EfDqF7YI. Trust me you will never listen to the song the same way again. Your words are extremely comforting, Thank you for taking the time to share.

April Vernon said...

Kelle Hampton is my favorite blogger, and I wanted to share the post she just put up for her daughter's 2nd birthday. Nella just turned 2 and happens to have Down syndrome. Kelle says, "You are everything we wanted. I only wish we had be cool enough to know it then." I have been there, Aaron. I know how scary those first days can be. I just want to encourage you...it won't be okay...it will be WONDERFUL!!!!! If you get a minute, here is the blog post I mentioned from Kelle Hampton...
http://www.kellehampton.com/2012/01/birthday-post.html

supertyler21 said...

Aaron,if you're in Pittsburgh tomorrow stop in children's hospital to see a remarkable DS child named Tyler,my son.he is struggling with an eating disorder but what a fighter. Western pa has one of the best DS support system.

Kim Kush said...

We have a 2yr old daughter who also has down syndrome. We did not know until the delivery room. Needless to say we were very shocked. She is doing amazing. She goes to Sunday school, talks, knows sign language. It's so funny because everywhere we go it's like she is a celebrity. I joined a local support group and it's so awesome to be with other parents who are going through the same things. I pray that he continues to well and can come soon.
Kim Kush

Stephen said...

Aaron, your boys are absolutely beautiful. I am praising God for what He is doing in and through your precious family. We are praying for y'all.
Rhonda and Stephen Janes

Shannon said...

"Tough times are inevitable. Being surrounded by love in the meanwhile (especially love that is responding to God's love) makes all the difference.." Aaron Shust.
Love that...btw this is Shannon, Dale and Linda Goodman's Daughter. We are praying for you hear/here @
Shine.FM

jlordway331 said...

I was listening to KLOVE and they mentioned the new addition to the family and that prayers were needed....so I did a search for Aaron Shust and found your blogspot. Not realizing where this was going to take me, I began to read. Then the tears began to flow like rain down my face. Not because I was sad for you, not because I felt sorry for you, but because I was overcome with joy! Why? you may be thinking...I know the heartache you will encounter, the pain and question that will come, then there is the exciting journey you are both beginning!! My 20 year old daughter, Morgan, has DS and had open heart surgery at 3 months old. God doesn't make mistakes! He gave you Michael exactly the way he is to reveal His perfection. I pray that God opens your hearts and eyes to see the world through Michael's eyes. When I look at the world from my daughter's perspective, God reveals to me Heaven is here when we allow ourselves a chance to see it.
I'm praying for healing of your little man's heart and that God WILL guide the drs. to give the best to your son. God bless your family
your sister in Christ, Jodi

Tom and Alicia said...

Aaron,
I'm a long time fan and have met you several times when you've come to Oregon. Your music has blessed and encouraged me more than words can say. A deep and sincere congratulations on your new arrival! What a precious gift you've been given! I have been blessed enough to know a dear child who, as Kelle Hampton says, "has almond eyes and that little something extra".

I am so thankful that the Lord has given you Michael. Fasten your seatbelt for more joy and love than your heart can hold. :) While this isn't a group you and Sarah had planned on joining, I know the Lord has an amazing path ahead for you.

Kelle Hampton writes a secular blog and she is two years farther down the road. Her little girl turned two yesterday and her post was so well written describing the road she's been on for the last 24 months. From the initial shock and grief to the immense joy...and how she wouldn't change a thing.

http://www.kellehampton.com/2012/01/birthday-post.html

Many blessings to you.

Carrie T. said...

I look forward to your wonderful blog and new pics each day, it is so encouraging to see the progress Michael is making with each new day! He will be home with all of you in no time. Give him a big snuggle from me, he is such a litle cutie!

Kathy said...

Hey Aaron - was just thinking about you and your family so decided to just let you know. Our family is praying for your precious Michael, for you, your wife, and family (and all of the medical professionals too)! Prayers that you may see God's special blessing as you journey through this time.

Kathy (Mom to Joshua and Kara who has DS/Autism)

Nina said...

You and your family are so blessed to have precious Michael! You will see what God has planned for you, through this little miracle! We have 3 girls with DS (8, 8, and 3/2 - including one bio and 2 adopted). They are blesings for sure! You have a beautiful family and your sons are just adorable. I pray that Michael continues to eat and get stronger for his heart surgery. My bio daughter with DS also had open heart surgery and other life threatening problems, but she is recovered now. Love to you all, Nina Clark

Franchesca said...

I heard about Micheal on my radio station today. It hit close to home. Two years ago 9/13/2009....my sister was told the same thing. They were pretty sure her baby had Down Syndrome. She was horrified to think that something she had done had caused this. I am a nurse and knew that she had not caused this but Honestly i didn't know much more than that. I was determined to find out all that I could, not only for me but for her and our entire family.
Who knew what a life changing blessing my nephew would be. We have had more than our share of hospital stays....he too had open heart surgery. Through all the chaos and pain he continued to melt the hearts of the hospital staff with his smile. During this time our family became closer than ever. God came back into my life and we knew he had given us a miracle.
Marcos is now the center of attention at all times. I come from a huge family and a plethora of kids. I myself have three but this kid is SPECIAL.
Everybody fights over him....no joke. My mother and I have an ongoing competition. He is so funny, daring, smart, sweet and nosy! We took sign language classes as a family. We participate in the Step Up Walk, every year. I now volunteer with MHDSA and Global Down Syndrome. We have been blessed with this little guy and have grown in so many ways. I will send prayers for Micheal and your family. Take advantage of the support out there and just breath......God is there by your side.

My name is Sarah said...

Baby Michael looks so cute. Love, Sarah.

Hello Aaron and Family, Congratulations on the newest addition to your family. You have been blessed beyond measure. He will add such richness and joy to your lifes. My best advice is to simply enjoy every precious moment.

I noticed you mentioned reading the Holland poem. I have a post on the side bar of Sarah's blog titled Revisiting Holland you might like to read one day. It looks back over her 22 year life span and the beauty of it all. God Bless you always. Joyce

WCTL said...

We are keeping all of you in our prayers at WCTL. We appreciate your updates. It is encouraging to see how God is working in and through your situation. Your faith continues to be an inspiration to us all.

barbara wright said...
This comment has been removed by the author.
GODSHEALING24 said...

Aaron, please read this story with Sarah. What an awesome gift to share with other people.

http://noahsdad.com/story/

Hope you are all doing well. Love your sister in Christ, Starla

Penny said...

Just found your blog today. Love your music. :) Congratulations on your newest bundle. He will bring more joy into your life than you or Sarah can imagine. You have three of the most beautiful little boys I've ever seen. God bless.