by Courtney Kruse | Mar 21, 2015 | Blog Posts
Down Syndrome Day was today. I am not sure how to celebrate our first DS day. I am not sure I want to celebrate the thing that has caused so much grief and trouble in the last year.
I hate Down Syndrome.
It has stolen Noah’s health, my time, and dreams.
BUT
I love my son.
He is the fiercest hugger in the family (sometimes they hurt). He grabs fistfuls of my face, and shouts MA-MA-Bob!! He happily hangs out wherever I put him with little protest. He is the best sleepy cuddler, laying absolutely limp on my chest listening to the thrum of my heartbeat, eyes wide open, his tickly hair perfect for kiss planting. I love my squishy baby!
I do not, however, love the part of my son that requires oxygen to sleep, or the part of him that necessitates monthly blood work, just to see if he has leukemia, and the part of him that will cause him to always be striving to catch up to his brothers. Heartache.
If I could separate Down Syndrome and Noah, I would, however there is no chromosome separator.
So this year I am not celebrating Down Syndrome Day. Instead I am taking a break from Down Syndrome. I will take a break from reading books about development, pouring over his labs and searching for solutions, and spending my time looking for the next thing I need to do to help him.
Today, I celebrate Noah.
1 For everything there is a season, and a time for every matter under heaven:
2 a time to be born, and a time to die;
a time to plant, and a time to pluck up what is planted;
3 a time to kill, and a time to heal;
a time to break down, and a time to build up;
4 a time to weep, and a time to laugh;
a time to mourn, and a time to dance;
5 a time to cast away stones, and a time to gather stones together;
a time to embrace, and a time to refrain from embracing;
6 a time to seek, and a time to lose;
a time to keep, and a time to cast away;
7 a time to tear, and a time to sew;
a time to keep silence, and a time to speak;
8 a time to love, and a time to hate;
a time for war, and a time for peace.
9 What gain has the worker from his toil? 10 I have seen the business that God has given to the children of man to be busy with. 11 He has made everything beautiful in its time. Also, he has put eternity into man’s heart, yet so that he cannot find out what God has done from the beginning to the end. 12 I perceived that there is nothing better for them than to be joyful and to do good as long as they live;
Ecclesiastes 3
by Courtney Kruse | Feb 14, 2015 | Blog Posts
Noah has been protected and fortunate that he had not gotten any serious illnesses for the last several months his life! This week Noah’s luck ran out. The boys came home with colds, and last Sunday, Noah got it too. It settled in his chest, and were able to do the nebulizer at home (which sometimes helped, but other times did not), but his cough caused him to lose feedings. We ended up in the ER on Wednesday morning with a very sick baby. He was limp, dehydrated, had high fever, retracting, super high heart rate that I didn’t feel confident giving him albuterol, 2 small wet diapers in the last day, and his oxygen requirement was over quadruple his normal. The ER doc said I could care for him at home because we had oxygen and nebulizer, but would admit him if I wasn’t confident. Good grief! How sick would he have to be for that doc to send us right up to the hospital to get help?! Yes, I am the fool, please help my baby.
By the time we got upstairs, his fever was still raging, because he hadn’t kept down the tylenol. He had really bad vein options for an IV, but the nurses managed to get it on the third try while I held him down and sang birdie songs and lullabies in his ear. We were all sweating when that was over. Noah spent the day alternating between being limp in my arms and crying inconsolably while saline, and steroids dripped into him. The next day it was 2 steps forward and one step back with nebulizer treatments. The fever was gone, he was hydrated, and he was discharged. He had fantastic nurses, and I asked lots of questions.
The pediatricians both remembered us, and were surprised that he hadn’t been hospitalized since leaving the NICU. Silver lining!
Since we are home, he had been doing great but coughed up 2 feedings last night and Dave had to go out for suppository tylenol in the middle of the night. I have never felt a kid’s temperature spike like his did at 4 am today.
Pray he keeps down the milk, the fevers stay away, and for him to breathe easy.
We were just down the hall from where Noah was born, 9 months ago. Thankful for how my broken heart healed. Thankful for the new set of mama bear claws I have grown. Thankful for my sweet snuggle buddy.
by Courtney Kruse | Jan 25, 2015 | Blog Posts
Noah’s appointments 2 weeks ago showed that Noah’s oxygen requirement is now worse! He has BOTH central and obstructive apnea, and his doctor won’t check him for at least 6 more months. We were told he might be done with it before he was 6 months old, but now it looks like he will need it for much longer. (feels like forever!) He now has an appointment with ENT in 2 weeks to see if his airway has any obstruction they can fix with surgery. If it helps him breathe better, we will do it.
It has been a hard several weeks. Noah first assessment from the school district was OK, showing only 1 area of delay, but his “6 month” (which was actually done at 8 1/2 months) showed a severe delay in 4 of 5 developmental areas, and we are watching him for autism, and let’s increase services. I cried. Right there in front of the teachers. And in the shower for a few days.Expectation is tricky. Should I expect? Should I hope for my son to achieve and do great things? Should I lower those expectations? Should I steel my heart to the desire for him to be better? Really, if you have an answer, help me out!
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.
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