Better – – – Again

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°.

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But we did get some much missed smiles!!
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Especially Greta!
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That baby loves her sister!!!
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Lots of prayers being lifted up, topped off with a refreshing baff and we had ourselves a much, much better baby today!
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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!!!
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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!
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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)

Sunday Afternoon Fever

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

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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.
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In the radiology waiting area there are two birds on one wall –
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And the third on the opposite wall (along with a beautiful dragon fly!) –
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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!”
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“Is it time to go home yet??”
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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?
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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…

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…and milks.
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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.

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I probably should call it a night, as I almost squirted saline solution on my toothbrush and stored my contacts in toothpaste.
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And my God will meet all your needs according to the riches of his glory in Christ Jesus.
(Philippians 4:19 NIV)

Tuesday thru Birthday + Recital

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.”
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“Does anyone have any special requests?”
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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!
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She took some long “recovery naps” in the afternoon. We started to see glimpses of Happy Baby when she woke up.
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After baff time it is cuddle time.
“I love my sister!!!”
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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.
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Eventually it was the proper time for the dress rehearsal. Nana accompanied us!
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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?
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“Well, it’s true!!!”
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It was a dreary day, so we went over to Flo’ Town to visit Daddy on a job site.
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We had to look away while Daddy was welding so as not to ruin our retinas!
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Friday

“Hi! It’s me, Norns!”
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“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?”
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“Party at Nana & Papa’s house!”
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“Go, Mommy, it’s yer birthday!”
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“Someone get me some milks!!!!”
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“I want to hear that Happy Birthday song again. I kinda like that tune!”
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“I got to go see some ducks!”
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“And then Mommy told me some secrets about how sweet I am!”
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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).
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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.
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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!
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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!
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Rejoice in our confident hope. Be patient in trouble, and keep on praying. (Romans 12:12 NLT)

Harrison’s Heroes

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

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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
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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!
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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!
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And they’re off!
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Duck-faced self portrait, while running, seconds before I SUPPOSEDLY tried to “off” Kate into a ditch!
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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:
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Checking in on Norns from my parking space.
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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.
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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!!!
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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!!!”
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They did a 4K 😉…. Well… William did.
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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.
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“Whuuuu!! That deserved a baff!!!!”
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Sunday

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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.
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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.
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“I love my Brudder n Sister!!”
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“And baffs too!”
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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.

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After her nurse arrived I took the big kids to the library and watched them play chess.
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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!
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“Who? Me?”
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“Yeah. I’m cute.”
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“And kinda sleepy!”
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Nora. A dear, a female dear.
Ray. A golden drop of sun.
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G. A name, he calls himself.
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Lah. A long long baff to take…
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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)