by Courtney Kruse | Aug 23, 2014 | Blog Posts
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 seizures, but if they come back, we will go back and try to catch them on an EEG and talk medication. For now, we are thankful they are gone!!! “wonderful things.”
AND
After horrible blood draw at the hospital. I asked the nurse what the result was, and she said she couldn’t find the blast percentage. I called Hem/Onc office, and the doctor called back saying the blasts were GONE!!
0%.
We go back in 2 weeks to see if he has reached remission! Big scary Leukemia looks like it is going away all on it’s own!
Whew!
You who have been praying, know that our healer God hears you!
20 Now to him who is able to do far more abundantly than all that we ask or think, according to the power at work within us, 21 to him be glory in the church and in Christ Jesus throughout all generations, forever and ever. Amen. Eph 3:20-21
by Courtney Kruse | Aug 21, 2014 | Blog Posts
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 chunk of time with mr. incredible yesterday- fantastic birthday! I am now thirty….something. If Dave is thirty-ahem, I must be thirty-ahem minus 2 or 3. The years all run together now.
We are going on day 2 at the Epilepsy Monitoring Unit at St. Mary’s. Noah has had no activity, and they want to keep him here one more day to see if this pattern of not having seizures continues. It’s bizarre being under surveillance. The nurse today said as she was watching, she was envious of my snuggly baby as her baby is 1 and not snuggly. The perk of getting to be here is plenty of snuggles!
Based on descriptions, the video, and his blood work, the Neurologist thinks this might be focal seizures caused by a small stroke. The stroke could have occurred any time when his platelets were so low, but just manifested itself in the last weeks. Noah will have an MRI tomorrow morning, and they are going to try un-sedated, well-fed, and swaddled. Typically they would use general anesthesia, but because of Noah’s oxygen requirement, it’s more risky for him to be put under. If he doesn’t cooperate, they will just scrap it, and get an MRI when he gets bigger (and under general anesthesia). It would be awesome to get that information now rather than later. Pray for a sleepy baby around 8am tomorrow!!
He is fairly miserable, but is enjoying exclusive mom and the fun mobile they set him up with.
Looking forward to washing off all the nasty glue on his head. There has to be a baptism washing analogy comparing it to washing off glue, but nobody sleeps at the hospital. Someone with a fresh mind think of something poetic and meaningful;)
by Courtney Kruse | Aug 16, 2014 | Blog Posts
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 closely!
A 24 hour EEG is the only way to get the information they need to determine if these are seizures and whether to medicate him. 24 hours of poking owies all over my baby’s head and body, and they want him to be lying in the crib for as much time as possible so they can get a good reading. My tiny veined baby may also need some blood drawn and possibly an IV. I hate having to be brave for him.
Yesterday he had several “events” last night he had 2 within a 5 minute period. Pray they are not getting worse! (except for during the testing on Weds)
Meanwhile back at the ranch, Dave is in full campaign swing, and all of this Noah drama has been extremely disruptive. He has not had the time to get on the phone and make those important volunteer contacts. So, if you have a couple hours in the next months you can give up, he sure could use you!
2 big boys are taking turns door to door campaigning with daddy this morning. The boys have been boys; getting dirty, playing with frogs, pretending about monster truck policemen with metal brains and blazer guns that shoot green fire (Josiah). Calvin is nearly potty trained all by himself! Dry diapers in the morning for a long time I am so thankful to not be potty training through all this chaos!
I am starting school with Solomon 3 days next week.
With all the constant supervision of Noah and appointments you can imagine, the house has been a mess. When we arrived home yesterday, Solomon walked me downstairs, and Grandma with the “help” of my boys did a super cleaning job! Sheets were even washed! She’s the BEST!
Phil 4:4-7 Rejoice in the Lord always; again I will say, rejoice. 5 Let your reasonableness be known to everyone. The Lord is at hand; 6 do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.7 And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.
There are lots of unknowns. Will this affect his long term development? Will he have multiple, complex long term problems that just won’t resolve, ever?
Praying, and letting God’s peace guard my heart and mind.
by Courtney Kruse | Aug 14, 2014 | Blog Posts
by Courtney Kruse | Aug 12, 2014 | Blog Posts
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. At some point today they will call us with an appointment with a neurologist- pray it is soon! I hate, hate, hate this waiting while he continues to have these little shaking periods! Pray it doesn’t affect his development! He hasn’t been moving his right arm as much, and is preferring to look to the left:(
Yesterday Noah also had an appointment with endocrinologist- the least of his issues, and nothing to report.
It’s one more thing he has to deal with, and another doctor in our “collection,” and I just want it to go away.
Meanwhile, he is happy and growing and doesn’t seem to be troubled by any of this. Blessings.
My wonderful mother in law, Gayle, was on the phone with scheduling at the clinic, and discovered the stranger on the phone has been praying for Noah! AND she reported that there was a group in Australia praying for him!!!! Incredible. Knocked my socks off! In those times when I feel like I can’t pray, apparently Noah is being prayed over by many!
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