by Courtney Kruse | Oct 20, 2014 | Blog Posts
It has been a few weeks since Noah has been in remission, and it’s like I have a different baby!! When those blasts went away, he finally started hitting developmental milestones. All at once. He caught up! After starting out almost silent for the first months, I think he might now rival Calvin for being the noisiest boy! He has energy! Previously he slept so solidly all night, he had me worried. Now he has stamina to be obnoxious in the middle of the night. I never thought I’d be thankful for a wakeful baby at 3am!!
This week I was working on all Noah’s appointments. He will be visiting many doctors in the next several weeks. Hem/Onc, GI, Pulmonology, Cardiology(hopefully the last one), Audiology, Neuro-Ophthalmology, well baby check with the pediatrician, and a a care coordinator who I am hoping will help make these appointments clustered. Oofda.
I keep waiting for my older boys to start asking questions, but for them it just “is.” We have a children’s book that is written specifically for siblings of Down Syndrome kids, and it explains what it is and what it means for our family and their little lives. The boys don’t care. They are so engrossed in their own little worlds of paper-folding, lego building, pretend ninja-fireman-skateboarder guy playing. I suppose it will be something that they will understand more as they and Noah grow up. There is some jealousy surrounding when we go to Rochester, but Grandma is amazing at distraction and slight of hand.
We all have had 2 rounds of colds in the last month. Thankfully, Noah only got the sniffles for a couple days when everyone else had fevers and colds. Amazing. His ability to produce white blood cells was down at that time! This more recent cold has been affecting him for over week now, but still no fevers!
With this cold, Noah revealed a new factoid about himself. He has Nystagmus, which means his little eyeballs shake- especially pronounced when he is tired or sick. After talking with his pediatrician and sending a video to his Neurologist, they say it’s probably not a big deal but now has an appointment with a Neuro-Opthamologist. Another doctor’s card to add to the stack, and another appointment on the calendar.
Today- Noah snuggles in the carrier while I work in the kitchen. We both love the snuggle until he falls asleep, and I dutifully have to lay him down and plug him in to oxygen. This always stings. I took for granted my babies who snuggled into my chest in a carrier while napping all over home and town, and occasionally I would even complain about the backache. I wish Noah could have the benefit of snuggling and napping with his momma. I shed a tear, (and mentally stamp my feet and throw a pity-party-tantrum), and put down and plug in the baby. I turn around and pour into another boy.
Just 2 weeks until the election. There have been lies going around about Dave, and at the same time his opponent’s less than loveable words have been glossed over and excused. It is easy to get upset, but remembering “For we do not wrestle against flesh and blood, but against the rulers, against the authorities, against the cosmic powers over this present darkness, against the spiritual forces of evil in the heavenly places. -Eph 6:12, And to put on that spiritual armor so I can be “strong in the Lord.”
A prayer I’ve been praying lately has been for truth to be made known, in spite of what they may read. Praying for many to be compelled to help, and for the Right voters to show up on election day.
God’s Will be done.
Turn down your volume. He is shouty.
by Courtney Kruse | Sep 28, 2014 | Blog Posts
Noah is in remission!!
For the last month his blood work was improving, and on Friday at his appointment the blasts were GONE, AND his neutrophils were UP, AND his platelets were just under NORMAL!!
Whew.
They know the longer a baby has TMD, the likelihood of getting full blown AML is greater. If he had gotten rid of it at 1 month, it would have been a 1 in 5 chance before the age of 5. Because Noah is an outlier, his chance is higher, but we don’t know how much higher. It’s maybe better not knowing. For now, he will have monthly trips to Rochester and will be watched closely. The big scary Leukemia monster is locked up, but not all gone.
Regardless, God is Good, and nothing is outside His control!
Timing of everything has been interesting. Ask me sometime, I’d love to share!
We are perplexed by God’s plans, but being pushed and shuffling forward not really knowing what is down the road. If there was a lesson for the last 6 months, it is “you are not in control.” and “trust, do not fear”
God is Sovereign, and intimately involved in us.
Trust in the Lord with all your heart,
and do not lean on your own understanding.
6 In all your ways acknowledge him,
and he will make straight your paths. Proverbs 3:5-6
29 Are not two sparrows sold for a penny? And not one of them will fall to the ground apart from your Father. 30 But even the hairs of your head are all numbered. 31 Fear not, therefore; you are of more value than many sparrows. Matt 10:29-31
In other news, Noah is doing well. He is growing and doing most things right on time. He is my best sleeper, and sleeps all night without being fed. I won the baby lottery!
by Courtney Kruse | Sep 5, 2014 | Blog Posts
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 Voice.”
and
“Storms can be a stage for epic light.”
http://www.aholyexperience.com/2014/06/how-to-keep-going-when-storms-keep-coming-that-might-rend-you-in-two/
One Voice. The voice who spoke all things into being, also calms my fears with His Word. His Word helps me remember He is the source of peace, comfort, patience. I can trust Him when the clouds seem dark.
You keep him in perfect peace whose mind is stayed on You, because he trusts in You. Isaiah 26:3
This verse makes trust seem so simple. Just stay my mind on Him. Stay my mind on Him instead of the worries and the “what ifs.” Easier said than done.
And this is how to fight for peace.
Noah will be 4 months old tomorrow. He otherwise is sweet, chubby, and stinkin cute!
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.
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