by Courtney Kruse | Oct 14, 2015 | Blog Posts
My boy with an extra chromosome is:
Extra snuggly.
Best snuggler. I not only get to enjoy this sweet stage of snuggles for longer than my other kids, and he is the best of the best. The extra flexibility and low muscle tone makes him melt, (and I melt a little too!). His head rests on my shoulder, and his body relaxes, and I feel his cheek smiling against mine as he says “dadada.” (yeah, we are still working on that).
Extra smiley.
Look at him! You can’t help but smile, and he reciprocates. He shows off all his jack o lantern teeth, and squirm with delight.
Extra beautiful.
Every child is gorgeous. Truly. I have thought this about each of my children, and random stranger children everywhere. This baby is extra beautiful. I could stare into those round eyes all day. Nobody has eyes like Noah. They are all fireworks and sunflowers. “Brushfield Spots.” Abnormality, sure, but breathtaking.
Extra delightful.
If he could talk, these would be his favorite words- “pick me up, bounce me, swing me, hug me, tickle me!” They would be said with laughter. He doesn’t squirm away while being held, he just wants me. I pick him up and he squeezes me around the neck as hard as he can, then yanks my glasses off my face and chucks them across the room. (Stop laughing.) “No, no!”
Extra leisurely.
Every milestone is awaited with bated breath, and sometimes I have to just wait and breathe as I wait. When he does finally say “no!” or sits up on his own, or gets a cheerio in his mouth on his own, or army crawls dangerously to the edge of the steps, sometimes there are happy tears
Extra patient.
His brothers love him. Sometimes it gets to be too rough. Siah knocks him down occasionally, and there are tears and angry cries.
Extra good.
He never asks to be fed. Never ever. He might get tired and rest his head on the floor, but he only really fusses when something is really really wrong. Some people with Trisomy 21 sometimes don’t have as sensitive nerves. So if he is cold or hungry or his diaper is scratching him, it’s no bother. He smiles right through. This is partially why he has low muscle tone, and we are constantly “revving him up” to help him activate. This is also responsible for the teeth grinding.
Extra tough.
For the hundred blood draws he’s had in his little life, he is easily comforted. Sometimes he doesn’t cry at all. He has endured more medical tests and procedures than our entire family combined. Many of them are painful, but he bounces back quickly, and has only just started being leery of people wearing blue gloves.
Extra playful.
His brothers love him. Josiah lays his head in Noah’s lap as Noah whacks his face. They both giggle with delight. There was a time when Noah did not interact at all. He sat. However Josiah with little direction from us or feedback from Noah talked to him, made silly faces at him, brought him toys, hand over hand helped him touch and play with toys. Noah suddenly “turned on” and now PLAYS with his “iah!”
He requires extra from mom too. I have to be extra vigilant as I watch him to ensure he is breathing well as he sleeps. All night long. I have to be extra attentive that he isn’t aspirating his drink at lunch. Extra protective when the boys pick him up or play with him to ensure he doesn’t bend the wrong way. Extra watchful for symptoms that would indicate leukemia or worsening breathing or seizures or new surprise problems we have yet to uncover… Extra scheduling for his next therapy or doctors appointments. Extra organized so I have my concerns written down, research articles filed and ready to discuss with doctors, and collecting and filing of insurance papers. Extra research as I read about his biochemical and nutritional needs, constipation cures, and ways to help his development. Extra cooking as I prepare different meals to accommodate food allergies and sensitivities in the family. Extra coffee when I have spent the night fixing oxygen tubing, and sucking snot from his extra narrow nasal passages instead of sleeping. Extra patience and energy for the domestication and education of 4 boys.
Our family has to be extra patient when mom has to go away with Noah for a therapy appointment. Extra supportive when Grandma or Daddy to give up their day so mom can run with Noah, or take care of him so I can adventure with the big boys. Boys have learned to be extra gentle. They have learned to share mom and with each other.
His extra chromosome has brought extra love.
by Courtney Kruse | Jul 29, 2015 | Blog Posts
There are questions without answers.
People often describe an experience as being “rollercoaster.” Noah has been nothing but a rollercoaster. Not the smooth kinetic kind that we grin through. He is Space Mountain. Blackness interrupted by strobe lights that leave spots in your eyes, piercing shrieks, shocking twists that pop your neck. As the car rolls into the gate (head spinning, stomach swirling), and we prepare to stumble away and sigh relief. The seat belts stay latched, and we ride again.
It’s not all bad. I wouldn’t want to ride that rollercoaster with anyone else.
Before all this went down 2 weeks ago, Noah revealed a dozen big and little milestones all at once. This is the disney experience I wanted! I jotted them down just so they can smile at me next to my pjs in the closet, and I can smile back with a prayer of thankfulness. It helps maintain perspective of progress, in spite of the wearying work.
The BEST thing he is doing is LOOKING at me. Not just looking, but looking at me and smiling! I had wondered about his eyesight or if he is autistic. Now he delights in being played with, while previously he didn’t seem to care! He seems more like a typical baby now, and we are all enjoying how FUN he is!
This is my happy little illegible list.
I have never had a kid change so much in just a few days!
Regardless of how dark scary his health is, or sunshiny bright Noah’s development is, God’s strength and goodness is my rest and praise.
In the day when I cried out, You answered me, and made me bold with strength in my soul. Psalm 138:3
So I hold tight to my sweet boy, and try to enjoy the ride.
by Courtney Kruse | Jul 28, 2015 | Blog Posts
Testing leads to more testing.
Last week Noah had some disappointing appointments. He failed his first hearing test after surgery, and it seems his tubes are clogged or fallen out. Already. His ENT wants to replace them. His oxygen saturations have been fluctuating between being great, and worse than before surgery. His doctor picked up her phone and scheduled a sleep study for Sunday night.
We survived the sleep study, and the results were good! She said they were so good, we wouldn’t have to use oxygen!!! This is what we were waiting for, right?! Skeptic mom here. A few nights ago, I had to have him on almost a liter to keep his sats up. Noah had a good night in the sleep center. He will have a home study next week, just to rest this momma’s mind.
The study also showed some prolonged “obstructive events” that seem to be affected by the position he was sleeping in. Maybe this explains his bad nights?
The chest x-ray was cloudy.
He had an echocardiogram today to see if his heart is involved. He has an appointment on Thurs with cardiology– a different doctor this time. (Last fall we saw a doctor who was hard of hearing (and maybe in denial). He couldn’t hear my voice, but listened to my baby’s heart tones. He said he didn’t need further testing, because it sounded like the holes had closed. Nice guy, but I want someone who can hear well to listen to my son’s heart.)
Next week Monday he is scheduled for surgery for new tubes, a bronchoscopy (look at his airway), and an overnight ph test to see if there is reflux in his lungs. So we get to do more days at St. Mary’s.
Sleep study = very little sleep for mom.
More on bated thanksgiving later.
by Courtney Kruse | Jun 29, 2015 | Blog Posts
by Courtney Kruse | May 28, 2015 | Blog Posts
The last few weeks have been very busy with appointments and working out solutions in a few different areas. If you care to know the details, I love to chat. There have been questions, praying, solutions, waiting, worrying, rocking, healing, pain, suctioning, sitting, and more waiting.
Noah’s breathing had gotten worse over the last month, and when we saw his ENT doctor, she wanted to do surgery to help his breathing. It was going to be scheduled a month out, but then she called and said she could do it tomorrow. 24 hours later he was being operated on, and 24 hours after that he was breathing so much better!! He has had several free from oxygen nights!
When they sent us home with oxygen a year ago, they made it sound like it wasn’t a big deal. It has been nothing but a big deal.
I will not miss going to “plug in the baby,”
I will not miss untangling tubes and wires.
I will not miss the clink of oxygen tanks when I step on the breaks, or realizing a tank is empty and having to leave wherever we are to get one.
I will not miss those nights I am up wrestling a half sleeping, and desaturating child to keep his cannula in his nose.
I will not miss watching him with one eye as he tosses in his sleep, knowing that the moment I close my eyes is the moment he will pull it out.
I will not miss researching better tape or sleeping solutions.
I will not miss little balls of tape in the laundry.
I will not miss the noise, the noise of the concentrator, or the noise of his squeaky breathing and snoring.
I will not miss well-meaning strangers pitying looks, comments or questions about my son’s medical history.
I will not miss watching my baby sleep worrying he is getting oxygen.
I will not miss bolting out of bed from sleep when the alarms are screaming, as I race dying brain cells to fix the problem.
I look forward to 3+ hours of sleep at a time sleep.
I look forward to going on off-trail hikes with the boys with Noah in the baby carrier.
I look forward to watching my son sleep, memorizing his face instead of checking his breathing.
I look forward to feeling tiny sweet puffs on my neck as he may occasionally nap on mom.
I look forward to letting my vigilance switch to other things.
I am currently sitting in the hospital for the 2nd time after surgery with Noah because he caught a cold and led to aspirating his tylenol, much crying, and refusing everything by mouth. He is on the upswing, and hopefully we will be home soon.
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