quick update. When Noah was born, his diagnoses, my c-section, and the subsequent upheaval of life, caused our time in Rochester to be incredibly emotionally exhausting. Because we knew about and planned for this surgery, we knew a positive outcome would be forthcoming, we are at peace (and exhausted). The first two nights he did not sleep hardly at all, and finally last night he was able to rest, though he kept rolling over onto his owie and waking himself up. Noah’s pain is now controlled,...

In the last episode, Noah was all fixed up. This is the episode in which we buzz around trying figure out his quirks to help him feel better. The first meds they tried with him were unsuccessful. He is like a pain killer connoisseur. He samples and spits, literally as he vomits and figuratively as his body does not respond. They were trying some pretty heavy meds on him, to no effect. People with Down Syndrome sometimes lack enzymes required to break down and use drugs. The tricky thing is...

"Doctor, French Fries." Was the promise we made yesterday as we took Noah to all the pre-op appintments and tests required before surgery today. But in reality, it was more like, "Doctor, Doctor, Doctor, Doctor, Doctor, French Fries, Doctor, Doctor, Doctor, Doctor, Doctor, swimming pool, park." I am thankful for the thouroughness of Mayo and his doctors, but wow. It was gruelling. Through these appointments we discovered Noah has a LEFT ascending aorta. Look up the anatomy of an aorta, it...

Noah is having a surgery Friday to move a major artery that wraps around his esophagus and trachea, affecting swallowing and breathing. God has gone before us, and Mayo has arranged to fly in the international expert for this type of surgery since his anatomy/case is a little different. We are humbled and thankful for this amazing opportunity for medical care while so many in this world don't have access. But isn't it just like God to provide for our needs before we even realize we need to...

Today is World Down Syndrome Day.  I like to think about it as a day to remember "they" are truly one of "US!"  Noah holds physical, character, and personality traits which are more similar to members of our family than to others with Down Syndrome.Noah is just one of the guys around here.  He gets in trouble in all the typical toddler ways.  These are some typical sound bytes: "Mom! Noah's in the bathroom, and the potty is open!" "Drop the legos!!" "No, no grab grandma's glasses." "No...

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...

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...

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...

Last week Wednesday I took Noah to a new Endocrinologist.  His labs have been half great, and half terrible.  When the doctor refused to acknowledge any of his 9 big and little symptoms as being related to her field, because *some* of those labs look so good, and blamed his issues on his Down Syndrome.  When I asked about other treatment options that are available, she said they are being researched now, and we won't have data for many many years.  Well, my baby has this problem now, and we...

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...