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!
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