Another day of fevers. 😔 The Tylenol / Advil have offered Nora some relief, but she’s just not herself. She’s slept lots today, which hopefully is her sweet little body’s way of getting rid of whatever it is she has.

Here is a sweet little video clip from earlier.

Um… Yes, please?

Amidst the concern over Nornor not feeling well, “life as usual” beckoned–dance recital rehearsals, baseball games, and trips to the grocery. We are so fortunate and blessed to have loving, trustworthy and knowledgeable nurses and sitters to help us out when we need them!

I got Greta to her dance studio shortly after 4:30, then buzzed back home to get Gavin to his 5:30 game in the opposite direction. William was able to join me in watching the game before I had to leave at 6:45 to get Greta. While I was still there Gavin hit the ball and made a really great play.

(If you zoom in very closely, to the right of the little white sign on the fence there is a duck in the outfield!)

As Gavin was standing on third base he looked over at us to see if we were watching. He smiled so big, so proud of himself, and instantly welled my eyes up with tears. He’s such a sweet buddy.

I got back to my pretty ballerina just in the nick of time. On our way home we saw a rainbow spot in the clouds.

We both agreed that the setting sun looked like an eye!

William and Gavin arrived home a few minutes after Greta and I. Norns was sleeping peacefully. William sent the kids upstairs to get showers and debated whether or not he should go get Penn Station or go on a run and eat something healthy when he came back. I laughed at him and encouraged him to go out on a run!!

Before long I heard the front door open and close, tired footsteps, and a mysterious peeping sound. As I turned around my eyes were immediately drawn to a gaping tiny yellow beak on a fuzzy little head peeking out of William’s cupped hand.

William found him on the curb of our street. There were no trees and no buildings anywhere close enough that this teeny tiny little bird could have fallen from. Mystery aside, we promptly prepared a makeshift nest in a container, loaded soggy cat food into a little medicine syringe and named him Albert Einstein Yusko. He snuggled up contentedly after I filled his little crop.

Ordinarily birds don’t need to be fed throughout the night, but it was anybody’s guess how long Albert had been hanging out on the curb waiting to be rescued. I responded to his feeble little peeps around 2 am with another helping of soggy cat food and then closed him in the kids’ bathroom safe from the cat. A baby bird stuffed with cat food. You do the math on that one!!! 😬

If I weren’t already so busy with the care of another certain 17 lb. “baby bird”, I would have gladly taken on the responsibility of caring for Albert just as I did my sweet little Ava. I did find someone to take care of him, and hopefully he will grow up to soar the great blue skies.

In his hand is the life of every creature and the breath of all mankind.
(Job 12:10 NIV)

Some of the lab results were back last night with very normal results. Her white blood cell count is right where it’s supposed to be. We have to wait a few days for the IgG results, which hopefully, maybe, might shed some light on things! Another trisomy Mom strongly suggested getting Nora’s IgG levels tested. If the levels are low, they can be treated. It’s made a drastic difference in her daughter’s life by cutting down the frequency and severity of colds and illnesses. If Nora’s IgG levels are low that will at least explain something!! Right now our best guess is that she picked up something viral – a stomach bug… (however she ONLY pukes with feeds, no diarrhea, and no one else in the family or people she’s been around have been sick). We don’t really go out much with her even still, but that doesn’t seem to be making much difference. You’d think we were over here licking the soles of our shoes at Chuck E. Cheese and Waffle House!!!

Closest to a smile I could get from her yesterday

It’s beyond frustrating to have her so sick again so soon after her last illness. A WEEK would have been surprisingly soon – but 3 days??!! Really??!!

As aggravating as this is, at least she’s not in the hospital. At least she’s still eating and gaining weight. Things could always be so much worse.

She was in very decent spirits this morning. I even got some kissy-smiles from her before our morning run/walk.

The big kids came with us on their scooters. I didn’t get pictures for some reason!?

The second the pain reliever starts wearing off Nora is miserable. She’s puked up most of her bottles today and isn’t a very happy baby. Kinda at my wits end.

Wait for the Lord; be strong and take heart and wait for the Lord.
(Psalm 27:14 NIV)

Thank you so very, very much for all of your kind words in your comments, messages, emails and texts!!! We are beyond blessed by all of you, even you silent ones! I feel your prayers and hopefully Norns will soon.

Monday

It was a beautiful Memorial Day ~ perfect weather, happy baby. I don’t ask for much else!

Sweet morning sleepiness

The big kids were still in Cleveland (or on their way home), and Nora was with her nurse. This afforded me a treasured afternoon with my husband. We ate lunch in Eden Park and watched birds frantically bathing on the rocks between two lakes. The still shots don’t accurately portray the frenzied activity that was taking place, but still cute.

We came back to steal some kisses and loves while we waited for the big kids to get back with Nana & Papa.

Then is was time for creeking! We were hunting for bird shaped rocks!

Sweet sleeping beauty

Unfortunately this came out blurry – but what a cute moment, Nora being carried up to the baff by her big sister!

“I like da baffs!!!!”

Tuesday

Just when we thought we were on a roll with Happy Baby, Crabby Gas Baby returned for much of the day.

An early morning walk at least put her back to sleep, but when she was awake she was unhappy. It may have been triggered by a bottle of prune juice that had accidentally exceeded its freshness. I only took the “Use By” date into consideration without noticing (until now) the tiny microprint which stated, “Discard 7-10 after opening.” Oops. Of course expired prune juice would be the likely culprit here, but my fears and worries start getting into a tangled knot in the back closets of my mind. I hate when she’s upset and hurting!!!

A late morning bath was soothing?

Trying to stay grounded, focused and optimistic, I glanced out the window. Of course. Of course. Of course.

Later in the afternoon I got some comic relief with my buddy boy at his orthodontist appointment. He doesn’t need to be seen until next summer! Phwew!

As the rest of the day unfolded Nora started feeling better. William and Gavin made it out to a Reds game with Nana & Papa!

Meanwhile back at home, Nora and I went on a run and met up with Greta who was playing then spending the night at her friend’s house. Nora was so excited to see her big sister!

Tired baby girl after a long, long day!

Wednesday

Today isn’t starting out so great. The moment Nora woke up she was unhappy. After our morning run (that appeased her for a little bit) I noticed she felt a little warm. I took her temperature and lo and behold she has a temperature of 101. She was obviously uncomfortable so I gave her some Tylenol. At that point I may as well have spun her around the living room by her feet and covered every square inch with puke. I had to remove couch cushions during that clean up process.

I am incredibly frustrated. As if her trisomy 18 diagnosis isn’t enough in and of itself we are constantly being bombarded with one setback after another. It’s hard to sit here and “play hopscotch in the driveway” when there’s a big funnel cloud about to come tearing through. I’m so filled with anger and self-pity today. I just want things to be KIND OF “normal” with a happy, healthy baby. It’s so stupid for me to sit here and ask, “Why why why.” I KNOW why, and the reason is astonishingly beautiful. This is just REALLY hard on days like this.

God is our refuge and strength, an ever-present help in trouble. Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea, though its waters roar and foam and the mountains quake with their surging. There is a river whose streams make glad the city of God, the holy place where the Most High dwells. God is within her, she will not fall; God will help her at break of day. Nations are in uproar, kingdoms fall; he lifts his voice, the earth melts. The Lord Almighty is with us; the God of Jacob is our fortress. Come and see what the Lord has done, the desolations he has brought on the earth. He makes wars cease to the ends of the earth. He breaks the bow and shatters the spear; he burns the shields with fire. He says, “Be still, and know that I am God; I will be exalted among the nations, I will be exalted in the earth.” The Lord Almighty is with us; the God of Jacob is our fortress.
(Psalm 46:1-11 NIV)

Saturday

Big morning stretches!

“Oh! Looks like it’s time to wake up!”

“Spinnin’ for the Showcase Showdown! Come on $1.00!!!”

“If I look really closely, it seems to me like it’s running time!”

“Ahh yyyeeeah! This is what I like! I’m all geared up for Harrison’s Heroes next weekend! Could you go just a LITTLE BIT faster, Mommy??”

“I love my Daddy.”

Saturday morning the Big Kids left for Cleveland with Nana and Papa to visit Aunt Em and Uncle Josh. They were very excited!

I was bemused to think about how far and how different technology has grown in just the span of my adulthood (which I guess isn’t as short of a span as I would like to imagine… ). But, even just 12 years ago we were dropping off rolls of film at the Photo Hut booth and having to wait a WHOLE HOUR to get our matte or glossy photo prints back! These moments are now shared with a couple of taps and swipes in almost real time. Pretty amazing to really think about that amidst totally taking it for granted!

Shared moments from Cleveland:

Sunday

Happy Baby still reigns! Prayers have been answered and THEN SOME.

And the bird drama continues! As I was driving home from church Sunday afternoon, my eyes were immediately drawn to a bird who’s flight path intersected with a 50 mph car that was heading in my opposite direction. I watched as the bird bounced up into the air and then plummeted down to the side of the road. It was moving, desperately trying to regain stability. My car already pulled over, I ran back to the injured bird. The juvenile starling was absolutely stunned, falling onto it’s beak with each attempt to stand. I slowed my pace as I got nearer so as not to frighten the poor creature into the path of another car. With swift assurance I enclosed the bird in a firm, but gentle grip then wrapped him up in the bottom of my shirt before heading back to the car.

Not even a mile down the road at a red light I peeked in at the bird who bravely saw this as an opportunity for escape. Suddenly I had a starling flying all over my car and perhaps a couple of raised eyebrows in the car behind me, “Is that a… bird???” In a matter of 30 frantic seconds, the bird was securely wrapped up in my shirt again and I was heading back in the direction I came from. I pulled over again in roughly the same spot I had been moments before. I walked over to the edge of a field and opened my hands setting the bird free. I watched as it flew completely out of sight. I would have loved another excuse to visit my rehabber friend, but I was delighted that the bird wasn’t critically injured.

As I drove back down the road, headed for home, I sympathetically identified with the young starling and the mourning dove too. We all must have had those moments when we were just flying along, minding our own business when out of seemingly no where a pane of glass or a speeding chunk of metal obstructed our flight. I knew what that was like to be figuratively lying on the side of the road, dazed and broken, trying to regain my balance, no idea what just happened or how I got there, “THIS isn’t what I planned or expected!!!” I also knew what it was like to be rescued, to relinquish the control over my life that I was so used to striving for. When I finally relax and trust — those big powerful hands wrapped around me are no longer so scary or restricting. They are compassionate and protecting. In them I can find rest.

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.
(Isaiah 41:10 NIV)

We have been rejoicing in the wondrous return of Happy Baby!!!

“Oh, hi! I’m back! This dress is a little tight though, Mommy…. Maybe when I was 16 lbs. but I’m 17 lbs. now.”

Her happiness and contentment now even supersede her good days before she got sick!! She has the intermittent gas pains from time to time, but they are very shortly lived and forgotten about moments later. The squeals and the happy little noises are so so treasured!!!

Yesterday was The Last Day of School for a couple of Big Kids that live here.

And just like that – this was their last time running up to the bus stop as 4th and 2nd graders. I am left behind at the front door wondering how in the world an entire school year just came to pass.

“Bye, Brudder n Sister! I’ll see you when you get home!”

“Here’s me on my morning jog! I really, really like running! Mommy is getting a little better at it. I like to go fast!”

“Mmm. I’m delicious IN the tub…”

“… And I’m delicious OUT of the tub!”

“Mommy thinks I’m delicious too. She could kiss and sniff and nibble on me all day long!”

“I’ll tell ya what else is delicious is SQUASH!

“I got to try a new food today and I really liked it!”

“I had enough of the prunes!! Blechhhh!!!!”

“I’m so happy to be feeling better!!!!”

===========

On Mother’s Day just as we were getting ready to walk out the door to go to my brother’s house I heard the tell-tale THUD of a bird hitting a window. I immediately rushed outside as I always do when that happens and saw an injured mourning dove lying in the grass. As I approached her I saw that she was alive… and conscious. Hopefully she was just stunned, I thought. I went back inside, but was dismayed to see that she was still in the same spot several minutes later. I went back outside again and this time noticed a little bit of blood in the corner of her beak. She reluctantly let me pick her up, and was obviously too injured to fly. We rounded up a box, placed a towel in it and put her in the dark laundry room for the time being.

The next morning we brought the box outside to release her, but she wasn’t able to fly at all. I recaptured her and put her back in the box. After the kids were off to school, Nora and I took a trip with the bird to visit our favorite, amazing bird rehabber friend, Ginger. Ginger is one of the neatest people I know and I think she just might love birds as much as I do! 😉 She was able to tell right away that neither of the bird’s wings were broken. That was a bit of a relief, but only time would tell if there was a brain injury. We just had to wait and see.

I was ecstatic to learn that 10 days later, the mourning dove had made a full recovery after spending some time in the flight cage. Ginger said the dove was ready to be released and we could come pick her up any time.

We opted for Friday–the last day of school. I picked Greta up from school and we headed out to go get the bird.

Greta very carefully held the carrier in her lap and kept a loving eye on the dove as we made our way back home.

Just before release:








She flew off to a nearby tree and sat there for awhile collecting her wits, probably wondering what in the world just happened!! We watched her for as long as possible through the binoculars before it was time to head off to Gavin’s baseball game.

Go, Wolves!!!

That was our eventful Friday. Despite being action-packed, crazy-busy, everything fell neatly into place without so much as a glitch. I love it when that happens!

And we know that in all things God works for the good of those who love him, who have been called according to his purpose.
(Romans 8:28 NIV)

It is with great honor and pleasure that we announce the resurfacing of HAPPY BABY!!!

“It’s HAPPY time!!!”

Wednesday morning was a little difficult. But after our morning jog and a couple of naps and some milks things started finally looking up!


Nora took some good naps with her sitter nearby and I was able to do some painting!

A few weeks ago Greta and I collected some bird- and heart-shaped rocks from down at the creek. We set up a spot for painting in the basement on an extra wide window sill – great lighting and great view! This is something fun and relaxing we’ve been able to do together while listening to music (or Gavin practice the drums).

I sat here today for a couple of hours painting birds on rocks and watching the ones outside who graciously and unknowingly acted as subject models.

I spied a downy woodpecker nest in the hole of a dead tree. With the binoculars I can hear and see noisy little baby bird heads peeking out!

I’m so thankful and appreciative of these moments. I feel like I can really enjoy them when my little Miss is happy and healthy!

As we were going through the mail that evening we encountered a bit of a dilemma.


“Ayyy! Would somebody get me a letter opener already???”

Even the setting sun celebrated the return of Happy Baby!

From the rising of the sun to the place where it sets, the name of the Lord is to be praised.
(Psalm 113:3 NIV)

Monday was another rough day of increased heart rates and gas pains. This was a continuation of a completely sleepless Sunday night. Those are the nights that I am incredibly thankful for the night nursing!! Amy came back again the next night – so at least Nora didn’t run her off!

Nornor did have her moments of contentment and did take a few decent naps throughout the day.

After her morning bath we got dressed up really, really pretty!

And then we got dressed up really pretty again!

Nornor did great through the night and by Tuesday morning she was looking and acting much better. We felt very comfortable canceling her morning appointment with the pediatrician and rescheduling later in the afternoon if need be. So thankful that need never came to be. She only improved!

She didn’t appreciate being left in the living room while everyone was in the kitchen!!

“Dat’s better!!!!”

“I’m a big kid now too!”

“It’s exhausting being a big kid!! I guess I’ll just sleep in the kitchen here!”

I was invited to a breakfast up at the kids’ school that I was thrilled to be able to go to. Nana (my Mom) came to stay with Norns while I was away.

I got back just in time for a session with Nora’s nutritionist and speech therapist. Prunes were the Special of the Day! Nora showed off for them again.

“Oh deez are delishisss!! Look at me! I’m a professional prune eater!”

“Nom Nom Nom Nom Nom Nom Nom Nom Nom…

“All that prune eating got me tuckered out! My Mom’s got me.”

“It felt so good to get a baff after my nap!”

“Eenen’ Mommy took me on a jog to the mailbox and back. Dat was fun! I came back and decided to be good and cute for the rest of the evening!”

I’m so relieved and thankful that Nora is recovering from her sickies. We’ve been getting intermittent smiles and squeals — Happy Baby is making a comeback!

My heart is broken for the victims of the Oklahoma tornado. Yet ANOTHER reminder how life can become so different in just the blink of an eye. Don’t take one minute for granted!

“I am the resurrection and the life. The one who believes in me will live, even though they die; and whoever lives by believing in me will never die. Do you believe this?”
(John 11:25-26 NIV)

Yes.

Neat pictures of the kids waiting for the ferry with Nana & Papa this afternoon after brunch:

William and I stayed home with Nornor who is still feverish and uncomfortable. Her heart rate has been averaging around 160s – 170s when she’s resting. Tylenol seems to be keeping her fever down.

“I just needed a good nap on my Mom!”

“Eeenen’ I felt a little bit better when I woked up.”

“It’s looking like it’s time fer me to get better!!

Praise be to the Lord, for he has heard my cry for mercy. The Lord is my strength and my shield; my heart trusts in him, and he helps me.
(Psalm 28:6, 7 NIV)

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Sorry. For the accidental premature posting last night. If you receive updates through your email you probably didn’t get the full thing!

If incase you hadn’t read on Nora’s Facebook Page we spent the bulk of the day in the ER at Children’s.

Crossing the river

Nora’s heart rate was elevated again early, early this morning and she may have been having some heart spasms. After consulting with her cardiologist later in the morning we opted to bring her in to the ER for assessment. She’s also still having lots of belly issues that are probably being aggravated by the antibiotic.

Just to make sure there wasn’t anything going on with her digestive tract, they did X-rays of her abdomen. That all looked normal, which kind of surprised me. I almost expected them to report back that there was a fanged, tentacled, gastastic monster camping out in there!

Her EKG results didn’t show anything out of whack either.

On the advice of our cardiologist by phone we had them do some blood work to see for sure if there were any bacterial infections going on. We hated to get her poked and prodded, but it was a necessary evil. The first attempt didn’t take – grrrrrrrrrrr – so they had to stick her TWICE. Fortunately the second time went smoothly.

We really were not sure what to expect, but were delighted when a very shorter than anticipated time later the doctor came back and told us that her labs were all clear!! The only thing that needed to be treated was her fever which was probably brought on by her cold. We could do that at home with Tylenol. The fever, undoubtedly was causing the tachycardia.

While we were at the hospital she never had any drastic drops in her heart rate to indicate any heart spasms, but if that had been going on earlier, the fact that she was able to bring it right back up was reassuring and doesn’t give too much cause for alarm.

Once we were back home, Nora rested peacefully.

While she and I were resting on the floor, a sweet and special big sister snuck in with a rose for us. We know it was from her because there was a note taped to it that said, “From Greta” She sure is sweet!

Beautiful reflection of the sunset in the northeastern sky ~

Goodnight, Brudder!

Goodnight, sister!

I am blissfully thankful to be writing this from the comfort of my own bed, being serenaded by a distant train whistle instead of alarms and beeping while shivering on a plastic fold out couch. Nora is in the loving care of her night nurse in her familiar living room / bedroom, free of any leads and wires. Please, please, God, let this be the end of these hospital episodes for awhile!!

Thank you so very much for all of your prayers today, and for your comforting words. We were so very touched and moved to tears at this outpouring of love from so many people! I’ve wondered what it must look like if you could physically see all of the prayers going up for Nora–how beautiful that must be.

I’m off to Sleeptown, USA. Now boarding….

“Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.”
(Matthew 11:28-30 NIV)

I’ve been awake since 3:00 this morning – so if I start rambling in a collection of typos and grammatical tripe, I’m going to go ahead and blame it on that ahead of time.

Nora did not have a good night last night, which continued on into the day. Belly troubles were her main complaint — prune juice not doing its job. She’s also had a lot of rattling in her chest and sinuses. Two of Nora’s nurses were able to hear some wheezing in her lungs but then it would go away when she was repositioned. To add to our worries, Nora was weighing in at 15 lbs. – which was a drastic drop from the 16 lbs. 6 oz. she weighed in at with her dietician on the 30th of last month. I know there can be a discrepency from scale to scale, so I immediately called Nora’s dietician who was ever so gracious to drop what ever it was that she was doing to come all the way over here with her trusty scale. On her scale, Nora weighed 16 lbs. 2 oz. There was still a 4 oz. loss, but that could be explained by her cold(s) and was not the cause for alarm that an entire pound would be! That was such a huge, huge relief. Thank you, thank you, Susan!!

We decided it would be best to have Dr. B. take a look at Nora and get his opinion, so Nora’s nurse and I packed up and headed out with William on his way to meet us there. At one point on our way there it was as if a trio of birds were flying along with the car. My eyes welled up with tears. I saw so many instances of the three birds that it was far past any kind of coincidence.

Dr. B. agreed that Nora sounded rattly and it was hard to get a good listen to her lungs with all of the mucus mayhem. The plan of attack was to get her started on an antibiotic incase she had something going on with her ears, as well as her lungs. He then sent us over to Children’s Outpatient for a chest x-ray. Despite Nora’s discomfort and the impending possibility of pneumonia, we were feeling incredibly blessed and thankful. How lucky were we?! We had a 2:20 appointment 20 minutes away from our house. We were immediately seen by the doctor, then sent across the street to another top notch facility for x-rays, on our way home by 4:00, and then a diagnosis of NO PNEUMONIA by 5:30. In William’s words, “Please don’t ever let us take this for granted!”

Nora seems to be a little more comfortable this evening and hopefully she will get some much needed rest throughout the night. Poor sweet girl!!!

I am perpetually grateful, thankful and blessed for all of your prayers today! Your texts, comments, and messages really pulled me through this day.

“I’ve picked you. I haven’t dropped you.’ Don’t panic. I’m with you. There’s no need to fear for I’m your God. I’ll give you strength. I’ll help you. I’ll hold you steady, keep a firm grip on you. (Isaiah 41:10 MSG)