by Courtney Kruse | Jan 11, 2015 | Blog Posts
Psalm 139:14 I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well.
Psalm 139 played over and over in my mind after Noah was born. That passage was God’s presence. Purpose. Sovereignty. It still comes to mind in these recent months, but with a different emphasis. Isn’t the Word amazing that it can have different emphasis in different situations in life?!
The first is that during the night when my mind is stayed on the little facets of Noah, I am reminded that “Even before a word is on my tongue, behold, O Lord, you know it altogether. You hem me in, behind and before, and lay your hand upon me. 4-5″ And I can rest.
The second thing that keeps playing in my mind is that Noah is “fearfully and wonderfully made.” What makes Noah fearfully and wonderfully made is that he is made in the likeness of God. His Down Syndrome is not the thing that makes him wonderful- it is that he is a child made in the likeness of God. It is the child, not the disease which is wonderful. Noah has shown me how intricate and perfectly created we are. What the medical field really knows and practices is limited.
Creator God is the Great scientist, lawmaker of nature, keeper of all knowledge, and revealer of Truth. I have been reading research articles, and have found some sad and also exciting information. The bad news is that Down Syndrome is a neurodegenerative disease and he will end his life with Alzheimer’s at a younger age than the general population with symptoms starting as early as 20s. Every time I read another article I have been offered the red pill or the blue pill. (Remember The Matrix?) After reading what will happen if I do nothing. I have to do something. The good news is that there are some amazing scientists who out of love for those with DS, have explored, researched and developed nutritional supplements to help slow the process. I have literally taken the “red pill” and now Noah and I (because I am nursing) are on a heavily researched by people much smarter than me, protocol of nutritional supplements. I could go on about what I am beginning to understand about Noah’s bio-chemistry, but it is nerdy. I pray as I am reading and mixing powders and drops that I would discover what is beneficial and True.
A month ago we thought he was almost finished with oxygen. We have a sleep study scheduled for next week which was supposed to be the last one before getting rid of oxygen. I got curious, and watched him on the pulse-ox while sleeping without oxygen, and discovered that he is desaturating. So I call the pulmonologist and for an appointment, and meanwhile have been “charting” his breathing and oxygen saturations. I have lots of questions, and am nervous about “why.”
If I say, “Surely the darkness shall cover me,
and the light about me be night,”
12 even the darkness is not dark to you;
the night is bright as the day,
for darkness is as light with you.
Meanwhile, we are schooling. Solomon has been interested in covered wagon pioneer days, so we have been reading many adventure stories. Josiah (almost 5) is reading simple stories, singing Hark the Herald Angels Sing, and loves worksheets. Calvin’s(almost 3) hobby is scattering toys, games, and puzzles and saying the pledge of allegiance.
Psalm 139
O Lord, you have searched me and known me!
2 You know when I sit down and when I rise up;
you discern my thoughts from afar.
3 You search out my path and my lying down
and are acquainted with all my ways.
4 Even before a word is on my tongue,
behold, O Lord, you know it altogether.
5 You hem me in, behind and before,
and lay your hand upon me.
6 Such knowledge is too wonderful for me;
it is high; I cannot attain it.
7 Where shall I go from your Spirit?
Or where shall I flee from your presence?
8 If I ascend to heaven, you are there!
If I make my bed in Sheol, you are there!
9 If I take the wings of the morning
and dwell in the uttermost parts of the sea,
10 even there your hand shall lead me,
and your right hand shall hold me.
11 If I say, “Surely the darkness shall cover me,
and the light about me be night,”
12 even the darkness is not dark to you;
the night is bright as the day,
for darkness is as light with you.
How precious to me are your thoughts, O God!
How vast is the sum of them!
18 If I would count them, they are more than the sand.
I awake, and I am still with you.
Search me, O God, and know my heart!
Try me and know my thoughts!
24 And see if there be any grievous way in me,
and lead me in the way everlasting!
by Courtney Kruse | Dec 14, 2014 | Blog Posts
Noah is a good baby- an expert snuggler. Be jealous, mommas, my baby would sit on my lap all day just melting. I love that I can squish his little cheek against mine, and sing to him, and he just seems to soak up all the love. Yes, he is good natured, but it is a baby’s drive to DO that makes them develop and progress. For Noah progression in development requires me to show him what he should do next. I am constantly thinking on this as I am caring for my children or home, and Noah is just happily chewing his thumb, but not progressing. There are not enough hours in the day.
Noah has been babbly and spitty the last few weeks. “Ba-da-da-da-da-mam-mam-ma-ba-pffftt.” It is a relief to hear him make these verbal milestones. With this new trick he has learned to spray, and squirt his medicine (hilarious ). If I had an extra hand, I would take a video.
In the last month, he has started a new medication for reflux, and it has helped amazingly! He no longer wakes up in the morning breathing like he is slurping the last of his milkshake through a straw (TMI?). Previous to that he hadn’t gained weight in about 2 months, and I was getting worried (though none of his doctors seemed to be too concerned). I am thankful for hard, cleanable floors and a washing machine. I am still perplexed as to why he didn’t seem to have a problem until about 2 months ago. What changed? He has a swallow study in January and they will investigate more. We shall see…
His Pulmonologist thinks he may be close to being done with oxygen. He has the dreaded sleep study in January, and hopefully the results will remove oxygen from our routine. It was the same doctor who started the discussion about reflux and got us connected with Neurology when Noah was having seizures. I am so thankful for her and good medical care!
He has appointments tomorrow, and for the first time, I am not shaking in my boots over the bloodwork. “Worry fatigue?”
by Courtney Kruse | Nov 27, 2014 | Blog Posts
Thanksgiving Eve is for reflection. I used to be in the practice of thanking God for the good. Lately those thanking muscles have atrophied. What am I thankful for? As I struggle with which answer to give at the table tomorrow, I searched the scriptures for thankfulness. The red thread- the people were thankful to God because He is Good. When it is hard to say “thank you,” I can thank God for His character; Sovereignty, Intimacy, Patience, Goodness, Provision, Wisdom…
Noah is almost 7 months old now. I think the grief of receiving a less than perfect child has passed, but a new grief has taken it’s place. We are now experiencing death of dreams.
Noah has had some great appointments in the last month. He continues to be in remission, and his bloodwork is nearly perfect (in spite of momma worrying)!! His immunity appears that it has rebounded, we are giving him some awesome supplements to ensure he doesn’t get sick, and he will be receiving the RSV vaccine this week. He has had a cold for nearly 7 weeks, and hasn’t gained weight in this time. His Pulmonologist thinks it is reflux causing congestion and cough, and I am starting to think so too. He will have a swallow study in several weeks to investigate this. He has perfect hearing in his left ear, but he wouldn’t cooperate to have the other one tested. His Cardiologist said he doesn’t hear any murmurs, and he will have an Echo done when he is 3 just to see if the ASD is truly closed up.
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!
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