Reflections

Last Sunday night (Sept 2) on into Monday Nora just wasn’t feeling good and very uncomfortable. When the low grade fever popped up we knew another visit to ENT was imperative. The holiday weekend limited us to doing anything except keeping her comfortable with acetaminophen until Tuesday.
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I called to make an appointment with ENT first thing Tuesday morning. They were able to squeeze us in at 1:30 with Dr. C. who we had never seen before. He was wonderful and quickly determined that Nora needed to be on an antibiotic based on the mucus in the back of her little throat. There was no sense in adding to her misery by holding her down to look in her ears with the microscope. We discussed Nora’s upcoming surgery for tubes as well. As I mentioned a couple of posts ago, pulmonology wants a scope done of her airway to get a look at her adenoids. If the adenoids are enlarged and ENT feels that it would be of benefit to remove them, they are going to go on ahead and do that while she is under. Dr. C. as well as Dr. E. are both very optimistic that this would be a relatively simple procedure with minimal recovery time for Nora. I’ve been running it past other families in the online trisomy 18 communities and have received a varying array of opinions from “best thing we ever did” to “absolutely no way”. I’m extremely undecided about all of this right now and am anxious to discuss it further with all of her doctors and specialists.

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By Wednesday, day 2 of the antibiotic, Happy Baby was back in full effect! It is such an enormous sigh of relief when Norns is happy!! We opted for grape bubblegum flavor again which is what she was agreeable with last time.
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Someone really sweet and happy came to visit with her Kelly in Mommy’s office.

“Scyooz me? I’m here for my 4:00 appointment for kisses and loves?”
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“So if I hold down da icons I can move dem around!!?”
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“Wouldja look at dat?! Dats kinda neat!!”
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“Aeaehhh… I’m not sure about dis headband, Sister!!”
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Rainbow spot in the evening clouds ~
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“Goodnighty night!”
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Thursday morning we got our act together in time to walk to school.
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I was trying to push the stroller with one hand and drink my coffee with the other. Greta was busy texting her Daddy with my phone, and taking pictures of me!
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“Dis place looks kinda fun!”
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Nora and I saw a rainbow spot on the way home!
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And three birds waiting for us back home!
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“I hang out here at home and play with all my things.”
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“An just when Mommy thought I couldn’t get any sweeter and prettier, I show up in this pretty headband!”
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“I’m a little lippy at times.”
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“And sassy too!”
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“It’s Friiiiiiiiiiiidaaaay!!!!!!”
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“Not like that means anything anymore though, right Mommy n Daddy? 😉”
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“We’ll just be hanging out here on the couch if anyone needs us!”
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Saturday we went on a benefit walk for Keegan’s Spirit Foundation which is an organization set up in memory of Keegan Southers. They provide hope and assistance to families who have children affected by congenital heart disease. Not only was this for a great cause, but the weather was perfect and Nora woke up happy! We packed it all up and headed out.

Milks in the shade. That’s what she likes.
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All that strolling made for one tired baby cake.
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Meanwhile in a tree…
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Sunday morning baffs are what she likes.
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She’s lippy and flippant!!!!
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“Datsa real cute girl in there!”
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As a face is reflected in water, so the heart reflects the real person.
(Proverbs 27:19 NLT)

I want to remind everyone of the event that Wing Eyecare has so graciously offered to host for Nora this weekend.
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We are still planning on being there with Nora, however it is almost 4 in the morning as I type this. I have been lying in bed staring at the ceiling for a couple of hours worried about the cold and flu season that seems to be already upon us with the colds and what not. In my Facebook newsfeed there are several trisomy 18 kids who are hospitalized right now with pretty serious illnesses. I’m awake thinking about them and praying for them… and worrying. In the news headlines cases of whooping cough are already being reported. Last year, starting in October Nora was in lockdown here at the house. We did not bring her out for any reason other than doctor appointments. We also tried to limit our own exposure to the general public. This weekend is going to be yet another exercise of faith in trusting that God will shield and protect Nora against anything that could harm her. However we have to use common sense as well. I know it’s tempting to want to touch her and pinch her little cheeks, etc. but it’s just too big of a risk right now. Even if you feel “totally fine” and “know you’re not sick” you could still be a carrier. That’s how this junk spreads around. And if you ARE in fact sick, please understand that a typical common cold that might be no big deal to you or your average person has the potential to be very, very serious for Nora, as is the case for any medically fragile child. I don’t mean to be callous and ranting, or rude… I am just a little on edge already. I also don’t mean to transpose this wonderful event that Wing Eyecare has so graciously put together for us into a public service message about germs. I’m so excited about this event and I can’t wait to see and meet those of you who are able to make it out! The weather is supposed to be perfect!

Maybe more for my own reminding:

Don’t be afraid, for I am with you. Don’t be discouraged, for I am your God. I will strengthen you and help you. I will hold you up with my victorious right hand.
(Isaiah 41:10 NLT)

7 thoughts on “Reflections

  1. Woohoo , you’re back !!. You can’t imagine how much I’ve missed my daily fix of Norns. I was beginning to think I had some sort of addiction to this blog, haha.

    Regarding what you say about your Facebook news feed on other children with T18, I’ve read about some of them who are on the ” Praying for Nora” page , and as I became sad and worried, I’ve decided to pray for them without reading the details. Every child is different even if they all have the same syndrome as a syndrome is a spectrum, so you can see everything from children that don’t make it at birth to children that have an amazing quality of life. If it has happened to baby X it doesn’t mean it’s going to happen to her. Norns, despite the trisomy, has an excellent quality of life , mainly because her different system functions are doing wonderfully. After the first year that is the most uncertain, you can look to the future with confidence, because we couldn’t ask her to be doing better.

    I’m pretty sure the ear tubes will work wonders ( I’ve seen that in other children) and fall and winter doesn’t mean a perspective of lockdown again ( thinking of that makes anybody feel depressed). So, SuperMommy, just take a day at a time. Now that the mistery of her fussiness has been solved , you have all the chances to win the battle, with the help of God, who takes care of her every day.

    Muuuaahhh 🙂

    P.S.: I’m afraid Apple has won another fan!!. Have you tried the ipad with her?. There must be some app suitable for babies, I guess…

  2. Hello Darlin’! Couple short thoughts: I had my tonsils and adenoids removed and tubes put in my ears all at the same time when I was a small child. I recognize that everything is different for a child with additional medical needs but thought I’d share that I had no issues (according to mom and dad).
    Thank you for the reminder about how “dangerous” I could possibly be for a child who is medically fragile. Sometimes its easy to forget how a simple wiggle of the toes or pinch of the cheeks can be harmful to others. Sometimes a hug of the heart is the best way to show our love.
    Lot’s of love, prayers and fondness surround you and the entire Yusko family. That’s my hug of the heart. Hope to see you Saturday (a girl can never have too many shades).

  3. Thanks for the reminder about germs when my temptation to touch little ones at the grocery store or wherever I see them in a cart. My grandma instincts sometimes overtake me. I thought of you and the family this morning when I was doing some errands. I looked into the sky at an overhanging wire and there were 3 birds sitting there and my thoughts were of you and the family.

  4. getting tonsils/adenoids out is difficult short-term because of the healing. When we had it done for our son (was age 2) it was indeed awful for about 5 days because it was hard to get him to take the pain medicine/tylenol, but the long-term result was good.

  5. NORA ROSE GETS PRETTIER IN EVERY PICTURE THAT IS POSTED. LOVE HOW HER HAIR CURLS. I NEVER PAID ATTENTION TO THREE BIRDS UNTIL NORA’S BIRTH AND THE SYMBOL OF THE THREE BIRDS CAME TO BE. NOW I SEE THREE BIRDS AS MUCH AS I SEE THE CARDINAL. I EVEN SAW THREE CARDINALS ONE TIME AND THAT WAS VERY EXCITING. I CANNOT BELIEVE IT IS FLU SHOT SEASON AGAIN. I WAS IN BLANCHESTER THREE DAYS THIS WEEK TAKING CARE OF MY NIECE’S DAUGHTER AND SON. THEY WERE SO GOOD FOR ME AND WAS SAYING THANK YOU EVERY TIME I TURNED AROUND. THEY ARE REALLY APPRECIATIVE OF EVERYTHING I DID. I ENJOYED TAKING CARE OF THEM. SO GLAD THAT NORA IS HAPPY BABY AGAIN. BLESS HER LITTLE HEART SHE HAS SO MANY UPS AND DOWNS, BUT SHE IS DOING REALLY GOOD. I LOVE YOUR FAMILY SO MUCH. HAVE A GREAT WEEKEND. LOVE AND PRAYERS TO ONE OF MY FAVORITE FAMILY’S. MAY GOD BLESS EACH ONE OF YOU ALL.

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