Yesterday we arrived home with the news that Noah is still not in remission, the blasts are still present.  So we keep up weekly blood tests and wait.  Statistics interrupt my thoughts. I'm impatient for my lesson in patience to end. Ann Voskamp's blog yesterday was about storms.   She said this: "They can tell you that doctors or debt magicians or some psycho-powder or miracle pill can neatly neutralize your storm, but yeah, we aren’t buying it: All storms only still to the sound of One...

O LORD, you are my God; I will exalt you; I will praise your name, for you have done wonderful things, plans formed of old, faithful and sure.  Isaiah 25:1 After spending 3 days at the hospital, Noah would not perform his seizure trick, and even started moving his right hand normally again!  The doctor thought he probably had a stroke.  Thankfully, the MRI was clear, and the EEG showed only normal activity.  His brain is perfect!  His doctor is now saying they don't know what was causing the...

If you have been praying for Noah these last months, you have grown in our hearts and are family!  We want you to join us for his Covenant Baptism and worship at Christ Church this Sunday at 11am.  Our church meets at Word of Life Church 20013 Stoltzman Rd, Mankato. Now here's an update: Yesterday was my birthday, and since I can't eat dairy or soy for Noah's tummy, birthday cake is not an an option.  Dave saved the day with birthday sushi yesterday.  He makes my heart go pit-a-pat.  I had a...

Visited with the Neurologist yesterday, and after explaining every little thing about Noah, she really didn't have much feedback for what this could be.  Naturally the one hour EEG from Thursday didn't show anything, as Noah didn't shake at all during that time.  He did, however, perform for the resident while she was taking the initial history!  So thankful someone saw it!  The Neurologist set up a 24 hour EEG next week Weds at St. Mary's.  I am so thankful they are following up with this so...

The last 2 days have been spent with regular appointments with Noah's specialists in Rochester.  He had a sleep study overnight to check up on his oxygen requirement.  Noah hated it.  They wrote all over his head, and superglued and taped 31 leads to his head and a few on his body, Then they expect a baby to sleep by himself in a crib.  There was little sleep going on last night.  Taking the leads off was torture!  The tech told me to turn away because the fumes from the acetone is not good to...

Noah has been doing something that (to me) look like seizures.  The pediatrician today had very little feedback for us as to what this could be, only said it doesn't sound like the more common "infantile spasms." He making a referral to a neurologist and is setting up an EEG.  My momma heart is sad that he will have more tests, and I hate helplessly watching him tremble.  They were able to coordinate extra leads during his sleep study tomorrow night which is checking on his oxygen requirement....

After being on an elimination diet for the last week and a half, Noah has less blood in his poop, but it isn't all gone yet.  I am still hopeful it is a dairy or soy intolerance. This week Noah had an appointment with his pediatrician followed by a phone appointment with his Hematology/Oncology doctor.  The labs drawn in Mankato showed 0% blasts, we were told this by his pediatrician.  Tears.  I wanted this to be true!!  A few hours later that day we received a call that that number was...

During the NICU days I spent time meditating on and memorizing this verse: fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand. Isaiah 41:10 There has been much reason to fear these days, and much of my day is spent imagining what it will be like if... This is what's been on my mind lately. "Fear not... be not dismayed" is my part.  I must be obedient in pushing away those fears, but I do not...

Our first appointment on Weds was with a GI specialist.  He said the reason for the bleeding could be 3 things.  The easiest and most common thing is a dairy or soy intolerance.  So, I am cutting dairy and soy from my diet and we are calling back in a week if the bleeding doesn't stop.  I am skeptical, as my diet has been just 1-2 servings/day.  I hope this is the  cause, because the other two problems are big problems.  He ordered an ultrasound of Noah's abdomen and they saw his spleen is...

The last week has been rough. There has been some small amounts of blood in Noah's diaper. On Thursday the first diaper of the morning had a big blood clot, and then subsequent diapers had more blood. Called, had an appointment, and they did a bunch of bloodwork. The bloodwork for the last 2 weeks in a row looks worse. They aren't going to do anything about the intestinal bleeding, except watch his blood work, and transfuse when necessary. We have instructions to go to the ER if the bleeding...