Friday

“Oh, hi! It’s me, Norns!”

“I like milks and I love my brudder!”

“My brudder is silly!”

Today I got to try some sweet potatoes! I kinda liked them! I do NOT care for pears!”

“I wonder if there’s anyone to play with?”

“Wh.. Is that a… Is that a baby in there????”

“Oooo! Hi, cute baby! Wanna play?”

“My Nana & Papa came to visit me Friday evening!”

“Look at what a big girl I am, everyone! Look at me drink all my milks!”

Saturday

“I went running with my Mommy and all a suddens my brudder showed up, an then I heard my Dad too! And look! There’s Miss Jaime pulling out of her driveway! Hi, Miss Jaime!!”

“Daddy and Gavin were on their way to work and slowed down to harass us for a few minutes. Dat’s kinda funny!”

“It’s important to stretch after a run!”

“An den it’s important to nap! All that running makes me seepy!”

Sunday

“Dis guy is my Dad! I really, really love my Dad! I like it when my Dad whistles random 70s songs in my ear.”

“This is an all time favorite!”

“An I like to go running with my Dad too! I got him some running stuff for Father’s Day!”

“Haha!! That shrubbery in the background looks like it’s Daddy’s hair!”

“My brudder loves me! I think my brudder will make a great Dad someday. In fact, Gavin wanted to be celebrated today too on the theory that SOMEDAY he will be a Dad! I wonder if he’ll try to sneak in on Grandparent’s Day too?”

“Daddy is my #1!”

Wwwoooahhh!! Look at the GIANT fish my brudder caught at Aunt Sarah & Uncle Dan’s!!!”

“Wait! It’s not THAT big! Silly camera tricks!!”

“Everyone had a nice time at Aunt Sarah & Uncle Dan’s celebrating Father’s Day! I had a nice time getting kisses and loves!”

“Happy Father’s Day to all the Daddies out there!!”

As a father has compassion on his children, so the Lord has compassion on those who fear him.
(Psalm 103:13 NIV)

Wednesday

What a beautiful, beautiful thing to finally have Happy Baby back — AGAIN! I am praying, praying, praying that Happy Baby sticks around for a good long while now! She’s such a sweet thing to have around!

In my angst and worry over Nora’s health, I couldn’t see past the fevers, the discomfort and the overwhelming desire to somehow make it all go away. It seemed so unfair, so pointless for her to suffer through this and for us to suffer through it along with her. When you are in the middle of life’s storms, it’s hard to imagine that there will ever be a break in the clouds. But then suddenly there it is. The rain stops, the birds are singing and wisps of steam begin to rise up from the pavement. Had the sun always been shining, it would be taken for granted. Now that Nora’s storm has passed, I am incredibly thankful and appreciative of just having a content baby! So happy that at one point I had tears streaming down my face THANKING God for answering our prayers yet once AGAIN! I wish I could somehow hold onto this perspective a little better when the dark magenta pixels are looming overhead (think weather radar image).

We rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope.
(Romans 5:3-4)

And to each of you who talked to me and wrote to me about your experiences with your own children — did you ever think antibiotic resistant ear infections, digestive troubles, allergies, etc. had purpose? I’m sure that was the last thing on your mind when you were (or are) going through them, but each scenario offered such insight into what might or might not be wrong with Nora. Although there are a few missing pieces, we at least have some of the puzzle figured out.

Nora and I ran a quick errand while the big kids were having fun swimming with some wonderful friends (and perhaps a cat).

(picture from the other day of Kittykins the Incredible Swimming Cat – coolest cat I’ve ever met)

Nora did okay in the car, but would rather I did not stop at red lights or stop signs. [Still considering getting hydraulics on the car to keep her happy.] She likes to MOVE! Nora got pretty upset at one point. The blaring Baby Einstein CD wasn’t working for her, but the next CD in the changer did the trick. It was a CD given to me by one of Nora’s sweet nurses around Easter time that features a choral piece telling the story of Christ’s death and resurrection. No kidding, she stopped crying almost immediately, her eyes were wide and alert and she just listened. Needless to say, we left that CD on for the rest of the way home!!!

“It’s time for milks!!!! I like milkies!”

Thursday

Happy Baby woke up early and put in a request for a run. It was bright and sunny outside, so we wanted to get a run in before the heat kicked in. Greta made sure Nora was safe, secure, kissed and loved before we headed out the door.

As we were running there were several sightings of 3 birds and I even caught a glimpse of a rainbow spot — which is barely discernible just beneath the obvious cloud formation.

Nora was happy and content. I was tired and maybe a little slower than normal, but we were enjoying our run none the less. I took my time up the hills, taking in the sights and sounds of nature…. and then of my phone, “BEEP BEEP BEEP BEEP BEEP!!! (robot voice) Severe. Thunder. Storm. Warning. In. Your. Current. Location.”

“Pffff,” I thought. There were maybe a few distant clouds, and the sun was shining. I had just downloaded a weather app on my phone that CLEARLY wasn’t working properly.

Nora drifted off to sleep and I took my time with lengthy rest periods of just walking.

As we turned down the street leading back to our street the northwestern sky no longer looked so friendly!!

“BEEP BEEP BEEP BEEP BEEP!!! (robot voice) Severe. Thunder. Storm. Warning. In. Your. Current. Location,” my phone pleaded again.

(raised eyebrow) (quickened pace)

Not 10 minutes after we were in the house, the sky unleashed its fury! It was almost dark as night inside with the lights off.

After William and Nora’s recent rain encounter I did invest in a rain cover for the stroller. This time around I think Mother Nature would have jeered and laughed at it before whipping it off up into the sky.

Good thing to know the weather app works!

Nora slept through the storm in her stroller, woke up for a little while longer and then got tired playing.

Later in the afternoon the day was vibrantly brightened by a very special visitor!

We had a great visit together and look so forward to seeing you again soon, S! Thank you for coming out to see us!

I came home from Gavin’s baseball game this evening to Toddlers in Tiaras!! 😳 It’s Itsy Bitsy Boo Boo!

You may say to yourself, “My power and the strength of my hands have produced this wealth for me.” But remember the Lord your God, for it is he who gives you the ability to produce wealth, and so confirms his covenant, which he swore to your ancestors, as it is today.
(Deuteronomy 8:17, 18 NIV)

I was incredibly relieved to hear that Nora had a good night with restful interludes of sleep upon rising this morning. She was still a bit fussy when she woke up. Her fever was registering at 101.0°.

But we did get some much missed smiles!!

Especially Greta!

That baby loves her sister!!!

Lots of prayers being lifted up, topped off with a refreshing baff and we had ourselves a much, much better baby today!

Her last dose of ibuprofen was at 9:45 this morning and we have not had to redose since then! Her fevers have stayed away!

Nora napped for all but 30 minutes for the entire day long. It was the best thing to have her awake and content! For the past 3 days if she was awake she was moaning and groaning. What a wonderful, welcome change and an absolute answer to prayer!!!

Greta had a fun play date this afternoon so my big buddy and I had a creekside picnic and then did some creekin’! This is a rock tower we built!

Thank you again for your prayers, your advice, your kind words and encouragement. We are so blessed by each and every one of you!

Praise be to God, who has not rejected my prayer or withheld his love from me! (Psalm 66:20 NIV)

By Sunday afternoon Nora’s fever had climbed up to 102.1° (38.9° C) and she was miserably uncomfortable.

I talked with her pediatrician and we decided it was best to get her over to Children’s to get some more testing done sooner than later. Plus we “just happened” to have our Sitter Extraordinaire in place to watch the big kids. Another instance of the right people being in the right place at the right time.

Once at the hospital we got right back to a room. The admitting nurse was just blown away that Nora feeds orally and she is as chunky as she is – 17 lbs. 14 oz. It’s in those moments that I am reminded of what a rarity and what a miracle Nora really is.

She had her bouts of fussiness, but we were able to keep her content for the most part. Her sweet little eyes light right up at the sound of her Dad’s voice or his whistling.

In the radiology waiting area there are two birds on one wall -

And the third on the opposite wall (along with a beautiful dragon fly!) -

They took blood, they took urine, they did a nasal swab, they did a chest X-ray, and an EKG. Each and every test result that came back was completely normal. CBC levels were exactly where they should be. Procalcitonin labs did not show anything and there is nothing abnormal in her urine. The only test results we will have to wait for is the nasal swab.

“This stinks!”

“Is it time to go home yet??”

With nothing really to treat but the fever itself, we were given the green light to head home. We’ve become fairly familiar with the doctor who was attending to us through previous ER visits and admissions. When he was finished going over everything, he asked if there was anything else he could do for us. William boldly responded, “You could pray for Nora?” Dr. D. smiled and said he would gladly do that. Then he asked, “Would you like for me to pray for her right now?” Absolutely!! So there we all were with our hands on sweet baby Nora while this awesome, awesome doctor PRAYED over her. It was truly a beautiful moment!

Was it any surprise when we lifted her up and saw a heart-shaped sweat mark from her hot little head?

We arrived back home around 10:00 that night. It was such a relief to be home!!!

Then along came Monday! Nora had an uncomfortable, restless night and seemed to be starting the day off not so great either. She cheered up a little as the morning progressed and after some Tylenol…

…and milks.

I took some time away this afternoon to offer my condolences to a couple of friends from many years ago who just lost their father. We’ve been in touch through FB and I just felt it on my heart to at least go to the funeral even if just for a few minutes. I had intended to show up before the service started and then leave to allow the family that time together. However, the service was starting JUST as I was walking in. I quickly and discretely took a seat in the back row of seats. Initially I was nervous that I’d be noticed prematurely, that my sudden presence would distract from the matter at hand. But I settled down and politely blended in for the duration of the service that I hadn’t meant to intrude on. As I sat listening to the pastor eulogize this man I had never met in this lifetime, I couldn’t help but think that I was meant to be there to hear what he had to say. To hear Psalms 46 read out loud was incredibly powerful, as was the famous 23rd Psalm. I hoped this grieving family was just as reassured by these words as I was. The hairs stood straight up on my arms when the pastor concluded with Isaiah 41:10 — “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.” Yes, He HAS, He DOES and He WILL!!! K. and C., you and your family are in my prayers and I truly am so very sorry for your loss.

I do wish it were under different circumstances and that I could have visited longer, but I did have to get back home to Nora and her nurse. Back home, things were pretty much the same. Nora was uncomfortable, unhappy and hot. The 102.2° fever warranted another dosing of pain reliever (it was Motrin’s shift), and a lukewarm bath. Slowly but surely her temperature went down and her comfort level improved. Just as we started to breathe a little easier Nora choked up a blob of mucus with a tinge of brown to it. Motrin? Very light orange. Sildenefil? White. Lasix? Clear orange. Could this be blood?? A few phone calls were made and within 15 minutes we were well on our way to the pediatrician’s office with a placated baby girl and a suspicious burp rag in a Ziploc bag.

At this visit we determined that it was indeed blood, but it was such a tiny amount that there was no cause for alarm. It could have been from her sinuses, her esophagus (from wretching), or perhaps the lining of her stomach (maybe irritated by the antibiotic?). It was not fresh blood and could even have been from the nasal swab test which was slightly invasive. Obviously keeping an eye on subsequent pukings.

Also while we were there the nasal swab results happened to come in. (Drum roll without a ‘tada’ at the end…) Everything came back negative. We gots NUTHIN. Again, we are so blessed and thankful that Nora is not suffering from RSV or any of the influenzas, etc. But, as with all the labs, there is nothing showing up, nothing to treat. Just these unexplained fevers.

We plan on paying visits to the ENT, immunologist, and GI to see if they can determine anything.

I probably should call it a night, as I almost squirted saline solution on my toothbrush and stored my contacts in toothpaste.

And my God will meet all your needs according to the riches of his glory in Christ Jesus.
(Philippians 4:19 NIV)

Tuesday

Nornor is definitely making an improvement but still not quite back to herself yet. We’re continuing to give her the antibiotic – which she has made it very clear she does not like. The syringe that we administer the antibiotic is larger than the syringes we use for her other medicines. She sees that one coming and she’ll start whipping her head back and forth trying to get away from it. There is a gritty texture to it and she is NOT impressed with it. We’ve found that if we can distract her with rattles, whistling, lights and clapping we can get it in her belly without gagging and pukes. It is QUITE the production!

“It’s NOT medicine time.”

“Does anyone have any special requests?”

Wednesday

We try to get out each and every morning for a run, weather permitting! Sometimes if Nora is lucky she’ll get to do an evening jog with Daddy too.

She gets herself tired!

She took some long “recovery naps” in the afternoon. We started to see glimpses of Happy Baby when she woke up.

After baff time it is cuddle time.
“I love my sister!!!”

At 3:30 we left for Greta’s dress rehearsal. However, when we got there we were politely and sympathetically informed that this was the matinee cast. The evening cast’s rehearsal didn’t start until 6:30. Apparently my brain can only process so much information. That memo was undoubtedly crumpled up on the floor in the corner of my brain somewhere. I was just relieved that it wasn’t on a completely different day. Fortunately my parents live nearby so we went and hung out there for a couple of hours.

A bird serenaded me on the antenna while I caught up on some correspondences on the back patio.

Eventually it was the proper time for the dress rehearsal. Nana accompanied us!

On my way back home I had some quiet time on the ferry. Greta was watching a movie on my phone and it was the perfect opportunity to pray for some of the people and families on my prayer list. As I was praying, I was also questioning God’s will vs. prayer. Do my prayers really matter, I wondered? What could be more powerful than God’s will? Who am I, who are we, to be able to persuade Him to do something that isn’t in His will? Is prayer just a waste of time? I didn’t pose the question with any true sincerity. I have seen firsthand the absolute power of prayer countless times throughout my life. I was in a sense trying to figure out how it all worked together. I quickly recalled a recent conversation I had with a friend of mine. She related it to us as parents. Without being too specific, her daughter was asking to do something she initially did not think was a good idea. She didn’t think it was anything her daughter was ready to do just yet. However, her daughter was heartbroken. She tearfully explained, without throwing a tantrum all the reasons she wanted to have this request honored. This might not have been her mother’s will for her, but after hearing all of her reasons it was reconsidered. This was not something that would emotionally or physically harm her daughter. All of her daughter’s reasons were earnest and legitimate. If anything it might become a hassle and an inconvenience for the daughter down the road, but Mom would let her figure that out on her own. No harm done, request granted. She even took special measures to honor her daughter’s request. Her daughter was over the moon happy. Had she not asked, it never would have happened. That made better sense to me in that context.

Jesus even explained prayer as it relates to being a parent:

“Keep on asking, and you will receive what you ask for. Keep on seeking, and you will find. Keep on knocking, and the door will be opened to you. For everyone who asks, receives. Everyone who seeks, finds. And to everyone who knocks, the door will be opened. “You parents—if your children ask for a loaf of bread, do you give them a stone instead? Or if they ask for a fish, do you give them a snake? Of course not! So if you sinful people know how to give good gifts to your children, how much more will your heavenly Father give good gifts to those who ask him. (Matthew 7:7-11 NLT)

As I disembarked the ferry and continued on my way home, my contemplations about prayer were interrupted. I suddenly remembered that I needed to stop for cat food. As I was pulling into a parking spot at the grocery store, I noticed a bumper sticker on the car in the next spot: “PRAYER WORKS” it said. ////chills//// Incase I’d had any questions!!

Thursday

We’re getting more glimpses of Happy Baby! Or is this Surly Baby?

“Well, it’s true!!!”

It was a dreary day, so we went over to Flo’ Town to visit Daddy on a job site.

We had to look away while Daddy was welding so as not to ruin our retinas!

Friday

“Hi! It’s me, Norns!”

“I’ve been hearing rumors of some sort of party or something this evening. It’s my Mom’s ’21st’ birthday I think I heard her say. I wonder what I should wear?”

“Party at Nana & Papa’s house!”

“Go, Mommy, it’s yer birthday!”

“Someone get me some milks!!!!”

“I want to hear that Happy Birthday song again. I kinda like that tune!”

“I got to go see some ducks!”

“And then Mommy told me some secrets about how sweet I am!”

Unfortunately, Nornor fell asleep and missed out on her favorite song being sung. Which was just as well as I didn’t need to be sung to more than once! It’s a big birthday and I tried to slide under the radar undetected with this one, hid my birthday on FB and everything. But I guess the proverbial cat was let out of the bag!

Saturday

It’s hard to look forward to the weekends anymore because usually there is nothing relaxing about them. I am finally sitting down after a frenzied morning of laundering baseball uniforms for the team pictures and leotards for dance recitals, while trying to soothe, feed, medicate and bathe a very fussy baby – and myself (minus the medicate part).

OF COURSE as I am literally about to walk out the door to bring Greta to her dance recital, we figure out that the very unhappy Nora has another fever of 101.4°F. I had given her ibuprofen earlier in the day because she just seemed uncomfortable. Obviously it was not helping. I even packed the girls up and made a mad dash to the grocery store to get some teething gel incase it’s her teeth that might be bothering her. For some reason this grocery store did not have any and Nora was on her way to freaking out. Thank you, Tiffany for saving the day and running to another store for me. I wish I could say the teething gel was the golden ticket, but it’s not. I have no idea what the problem is now. Is the antibiotic not working again? Is it something else altogether?

I absolutely hated leaving Nora, but I knew she was in very, very good hands. I talked to her pediatrician just before the recital started and we just need to continue treating her with Advil and Tylenol. We went over several different theories and plans of action, which I won’t elaborate on right now. Hopefully what ever this is will GO AWAY!!!!

Here are pictures from this evening.

We “snuck” over to Nana & Papa’s while they weren’t home to get a Lego kitty cat that Greta had left behind last night. We borrowed their backyard for a pretty picture (and put it back exactly how we found it). We did unleash some cleaning fairies in the basement to tend to the mess the kids had left behind!

We were happy to get back home to see Norns. She seemed a little happier, but still a little fussy. Please pray her through whatever this is! PRAYER WORKS!

Rejoice in our confident hope. Be patient in trouble, and keep on praying. (Romans 12:12 NLT)

Now that the big kids are out of school I’ve discovered my allotment of time and energy is MUCH to be desired. I know you understand, but I apologize anyway for the infrequency of my posts! Here’s the past three days ~

Saturday

Last year I had the pleasure of meeting Emily & James Mummert. The pleasure was tinged with sorrow as they had then very recently lost their son Harrison to trisomy 18 on May 29th of that year.

Just over a year later they put together an amazing event in memory of Harrison in the form of a 5 and 10 K race. Over 500 people (!!!!!!!) showed up to celebrate the short yet mighty life of Harrison James Mummert. Because this little boy simply existed there are people that otherwise would not know each other who can now call each other friends. Because of Harrison $8000 (!!!!!!!) from this awesome event will benefit the NICU at Dayton Children’s Hospital to assist other families who are faced with weighty hospital bills on top of the already stressful experience of having a medically fragile infant.

Carry each other’s burdens, and in this way you will fulfill the law of Christ. (Galatians 6:2 NIV)

Pictures from the race:

Emily (and Baby Marshall due in a couple of weeks 😊), me, and James

It was absolutely awesome to meet Harrison’s Nini & Poppi, his Nana & Papa, as well as some of his aunts, uncles and cousins. I even got to meet some of you awesome prayer warriors who also came! You’re all awesome!

Awhile back James wrote a poem about their loss and asked a good friend to set it to music. These friends performed the song live and I don’t think there was a dry eye in the parking lot. Kate R., who came along with me, pointed out the three birds that flew over the tent during the song. Of course!

And they’re off!

Duck-faced self portrait, while running, seconds before I SUPPOSEDLY tried to “off” Kate into a ditch!

Many Multiple Marathon-Runner Kate probably could have run circles around me (which is why I tried to get rid of her around the first bend – she makin’ me look bad!!), but she kindly opted to stay at my “arduous” pace. I was amused that she was able to converse with me as if we were simply sauntering down a grocery store aisle. I would respond in sentences with 30 seconds between each word, meanwhile trying to coordinate my pissed off heart and lungs! “WHAT…. are…. you…..doing…. to…… us???!!!???!!!!???!!!” they demanded.

Considering this is the first time I have ever continuously run such a CRAZY distance (3.1 miles!) I’d say I made pretty good time! I was rather pleased with myself and now I know I can actually DO that! Now if I can only convince the rest of my body!

Kate’s fancy runner’s watch:

Checking in on Norns from my parking space.

We had planned on bringing her with us, got her acclimated to the jogging stroller for this and everything. She still wasn’t feeling her best and stayed home with her Dada.

Meanwhile back in Kentucky – a boy and his Papa. Papa was able to take Gavin to his baseball game. This picture made me smile. I love their sweet relationship!!!

Once I got back home Nora and her Daddy did their run for Harrison. Look who got Bib #1!!! What an honor!!!

“I’m number ONE!!!”

They did a 4K 😉…. Well… William did.

It started drizzling and I got a phone call to come to the rescue. I got Norns in the car, but there was no room for the jogging stroller, so William just ran home with it in what had become a bit of a downpour! Incase you were one of the witnesses who were befuddled and confused first at the sight of “some idiot running with a baby in the pouring down rain… No wait… There’s not even a baby in the stroller!? It’s empty!” as you passed by in the comfort of your dry car, my hubzbind is not crazy. He wanted you to know.

“Whuuuu!! That deserved a baff!!!!”

Sunday

Nornor still isn’t quite back to par yet. After brainstorming with Kate on the way up to the race Saturday, gleaning advice from the trisomy 18 online community, and speaking again with Nora’s pediatrician Saturday evening this is all looking more and more like an ear infection that we’re dealing with. The last Dr. B was able to peek into her mouth her throat looked a little red. She has mucus that she’s coughing and gagging up that must be coming from somewhere (ear drainage?). That’s triggering her gag reflex which is causing the vomiting. It’s seems likely that she had the ear infection with her previous illness which involved lots of upper respiratory junk. She’s on her back a lot, which of course would increase the likelihood of it migrating to her ears. We put her on the Augmentin which eliminated some, but not all of the bacteria. After 4 days of being on the Augmentin she started feeling better and we had Happy Baby back for a few days.

The remaining bacteria had a few days to regroup, start up some club music, disco ball, dry ice, and began breeding again. Then we got Sad Baby right back. I wish we could see into her ears, but as we’re not able, this seems to be the likeliest of scenarios. She is on another different antibiotic called clarithromycin which will hopefully do its job!

In the mean time we are keeping her comfortable with ibuprofen, Tylenol and extra special loves.

“I love my Brudder n Sister!!”

“And baffs too!”

Monday

Nornor definitely seems to be making some progress. She still had some fevers going on in the morning, but perked up after some Advil.

After her nurse arrived I took the big kids to the library and watched them play chess.

After the game abruptly ended over a conflict about the rules I told them to pick out some books. I had to explain to Gavin that a DVD and Sports Illustrated didn’t count as books and ended up picking something for him as he was busy pouting.

Back home Greta invited a friend over while Gavin went up the street to play. The girls and I went creeking!


“Who? Me?”

“Yeah. I’m cute.”

“And kinda sleepy!”

Nora. A dear, a female dear.
Ray. A golden drop of sun.

G. A name, he calls himself.

Lah. A long long baff to take…

The Lord will guide you continually, giving you water when you are dry and restoring your strength. You will be like a well-watered garden, like an ever-flowing spring.
(Isaiah 58:11 NLT)

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)