Without any doubt, I can say that yesterday was the longest day of our lives.
It began with me (Deb) picking up Josh from the airport after he flew back from Alabama. We headed back to Josh's parent's house to pick up Noah and head out to St. Luke's hospital for Noah's MRI.
Noah's MRI took around 3 hours from start to finish. (One of my most precious memories will be of a sweet nurse's aide who took it upon herself to check on Noah in recovery and report back to us. She referred to Noah as "Little Noah Man" over and over again which made me smile.) The technician gave a copy of the scan to us on CD to hand deliver to the neurologist after the MRI.
The neurologist then had the unpleasant task of telling us the worst news we could possibly imagine. (He is probably one of the most gracious doctors I have ever met...he spent probably an hour and a half with us, long after his office actually closed.)
Here is what we know:
1) Noah has a rare genetic disorder that is causing a degeneration of the white matter in his brain.
2) The disorder is likely the cause of the feeding issues he has been having as well as the abnormal eye and head movements and slowed development.
3) The disorder is in a category known as "leukodystrophies" but we do not know yet what specific type of leukodystrophy is affecting Noah.
4) Noah will likely be admitted to the hospital sometime next week to undergo a battery of tests in an attempt to identify the disorder. During this hospital stay, we may have a feeding tube inserted so that we can better control his calorie intake and encourage weight gain.
5) There is no treatment for this condition, only a management of the symptoms as they develop. Life expectancy cannot be predicted at this time but it is unlikely to exceed 10 years.
We are heartbroken. But we continue to place our hope and trust in the God who knows Noah's inmost parts.
Joshua 1:9 "Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the LORD your God will be with you wherever you go."
Remembering Noah
About Me
- Deb
- Tuscaloosa, AL
- Where to start? Josh and I are an ordinary couple who had an extraordinary little boy. Noah was diagnosed with a leukodystrophy that caused abnormalities in his brain. He passed away on August 16, 2008, just 364 days after he was born. This is a story of our journey, the joys and sorrows we encountered, and the faith we relied on as we loved our little boy.
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18 comments:
Elizabeth and I will pray and keep praying, as will Twin Oaks Church.
Noah, Josh and Deb, We are praying to our gracious and merciful Lord for each of you. We are thankful for your faith and knowledge that Jesus Christ is our source of strength, healing, love and salvation. I have requested prayers from hundred of prayer warriors from my church to lift you all in prayer and I cling to the promise that God will be along side you every step of the way! Carol & Tim Travis, Sarah & Rachel
Josh, Deb,
I will keep your family in my thoughts and prayers.
Dear Jesus,
Divine Physician and Healer of the Sick, we turn to You in this time of illness.
O dearest Comforter of the Troubled, alleviate our worry and sorrow with Your gentle love, and grant us the grace and strength to accept this burden.
Dear God,
we place our worries in Your hands.
We ask that You restore Your servant to health again.
Above all,grant us the grace to acknowledge Your holy will
and know that whatsoever You do,
You do for the love of us.
Amen.
Matt R
Josh and Deb,
I am pretty much speechless. My thoughts are with you as you all face these challenges together. I wish there were some magic in me to change everything for you but high hope has always done miracles. Be well.
Josh and Deb, You are two of the most lovely, caring people I know. Noah is so lucky to have you as parents to support and cherish him in these trying times. Your love for him will most certainly carry him through it all! Brielle
We keep up with your blog through the Mohr's... we're praying along as well.
Deb and Josh,
This is Linda Newell, Gail's mother. I have just received your news. I am heartbroken also.
Noah is in our hearts.
Linda and Dennis
Josh and Deb,
I was so sad to hear about Noah. I got the email forwarded to me from my Coach, Sharon, and I couldn't be more thankful that she did so that I can begin praying for you. I know that this is not something to be happy about...but what I am most excited to hear about is how much hope you are putting in the Lord. I know it is one of the hardest things to do, but the fact that you can praise God for this fearfully and wonderfully made, loveable little Noah while you are going through the hardest time of your life, is amazing. God will heal you if you trust in Him. What wonderful news. Again, I am grieving with you during this time, and I will pray for you.
May the Joy of the Lord be your strength.
MC Richmond
I just can't imagine. We're praying...
Josh, Deb and Noah,
I will keep you all in my nightly prayers especially those I pray to the Mother of all Mothers, Mary to keep Noah close as you all journey into this next phase of your lives. You do not know me. I am a mom of two small boys, Jack 3 and Will 8 months. Your friend Jodie will be photographing us in April and I read her blog with requests to pray for Noah. I began to cry as I read your story and saw his beautiful face which resembles my son Will. I will pray for strength for you and Josh and comfort for your precious son. May the grace of God sustain you, Sincerely, Sarah Patton
We are praying hard for you...
Noah, Deb and Josh, We are praying for you all. We love you. Garrett and Sarah Call
Your family is in our thoughts and prayers at Calvary Baptist Church of Tuscaloosa, AL. God Bless you.
Josh, Deb and Noah
Words cannot express our sadness. Noah couldn't ask for more loving, caring parents to be by his side. Your family is in our prayers.
Shelley, Justin and Avery Reed
I can't imgaine your pain. Philip and I are praying and have asked our small groups here in Houston to pray for you.
Josh, Deb, and Noah,
Our hearts are broken with you. Little Jacob was born only four days after Noah and we have enjoyed watching Noah grow via your blog. I got the news from Patrice Mugg yesterday as I was talking to her about the horrific shooting in Kirkwood. Too much horrible news on all fronts. We will continue to enjoy Noah and your family will be at the forefront of our thoughts and prayers.
Love,
The Wagners
Josh, Deb & Noah,
Heather just sent us your email, and we are stunned and saddened, yet uplifted by your words, your hopefulness, and your ability to see the blessings that have and will continue to come your way. We hadn't had a chance yet to say how much you all will be missed at UMSL, and how grateful we are that Josh was with Heather throughout her collegiate career. We have all of you in our prayers. Noah is truly blessed to have you both as his parents.
Dan, Gail, & Josh Nichols-Black Earth, Wisconsin
Dear Josh & Deb,
I can only offer my heartfelt prayers for each of you that there may there come peace of mind, calmness of spirit, wisdom beyond understanding, joy and even laughter to bring healing.
Please know you are cared for and loved.
I am sharing this with prayer warriors whom I know will stand in the gap for you.
Debbie & Ashlee B.
St. Louis
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