“Has anyone seen Nora? No one knows where she went……”
“April Fools!! Dat was me!!”
“I tricked my whole family and da whole community on April Fool’s Day wif my disguise!”
Nora is so tricky!! She really had us going! We couldn’t get much information from this “other” baby in strange glasses! Those teeth looked sooo familiar though!!!
Meanwhile back in March ~
By St. Patrick’s Day, Nora’s cold was definitely showing improvement. Even though she doesn’t have an ounce of Leprechaun in her blood, she was more than happy to celebrate the occasion. Plus it was her 23 month birthday!
Incase you missed this video on Nora’s Facebook page, here she is wishing everyone a Happy St. Patty’s Day with green boogies! Her squeaker was still broken ~
Now that her cold has finally come to an end, we are all literally and figuratively breathing easier!
Here is Nora on a trip into the kitchen in her special chair ~
I sporadically decided to surprise Gavin at lunch that afternoon. He’s my buddy boy! I worried that he might suddenly one day become “too cool” to have lunch with his parents in the school cafeteria. I love this boy!
On St. Patrick’s Day we listened to Celtic music during dinner. If I had the ability to preplan and organize anything in advance – perhaps I would have whipped up some shepherds pie or corned beef? Theme music to accompany the dinner or occassion is very important here at our house. For instance, on taco night(s) we listen to mariachi music (sombreros are on my shopping list). In the picture below we were eating pork chops with red cabbage and spätzle, which of course called for some POLKA. Greta was appropriately dressed with Gavin’s Bavarian hat. What’s the sense in having “normal” dinners, I wonder? ;)
March 18th was Trisomy 18 Awareness Day. Nora and I posted this on Facebook to honor the day ~
With this precious, animated, life-loving baby a part of our lives, it saddens me that the option to terminate her life was presented. I’m not pointing any fingers or placing any blame. It is a part of nearly every family’s story who has been given the prenatal diagnosis of trisomy 18. Some families take that route because they are pressured into believing that they are doing the right thing for their baby. They are misled into believing their baby will not have any quality of life. It is also a decision that is made out of fear. Generally speaking, people tend to fear what they don’t know or understand. With the rarity of trisomy 18, many doctors have little or no experience with the condition. I am not a doctor, but I can imagine that it might be a little frustrating or intimidating (frightening even for them as well?) to be presented with a case that in all likelihood they can’t “fix” or “cure”. I will say that when we made the decision to continue my pregnancy with Nora, my awesome obstetrician was visibly relieved and was fully supportive of that decision.
So here we are with Trisomy 18 Awareness Day, the purpose of which is to dispel the myths surrounding the diagnosis. Here are some general facts and information about Trisomy 18:
- Trisomy 18 is also known as Edward’s syndrome.
- Humans have 23 pairs of chromosomes, for a total of 46 chromosomes. Trisomy 18 is a triplicate of the 18th chromosome. (Sidenote: Down’s syndrome is a triplicate of the 21st chromosome and and also known as trisomy 21.)
- Trisomy 18 affects 1 in 7,000 live born infants.
- Trisomy 18 is not inherited.
- Trisomy 18 is not caused by something the parents did “wrong”.
- The third chromosome can be passed on from the mother or the father.
- Trisomy 18 can affect anyone and does not discriminate by age, ethnicity, or economic status.
- There are no cases of trisomy 18 that are exactly alike. It is unfair to assume that “one size fits all” with treatment plans and options.
- Children with trisomy 18 are so very much more than a diagnosis. They each add inestimable value to their families and to those who have the privilege of knowing them, no matter how long or short their lives.
Does this look like a little girl who has no quality of life?
Heart sightings ~
March 21st we got to see Wicked at the Aronoff. This was a Christmas present to the big kids (including KelKel) and an anniversary present to Nana & Papa. We had so much fun! We saw a sun rainbow on our way across the bridge into Ohio on our way there.
That Saturday we got a special visit from Aunt Em and Uncle Josh all the way from Cleveland, Ohio! Uncle Josh was busy playing basketball outside with Gavin and missed photo opportunities!
“Dat’s my Aunt Em?”
“Yeah. Dat’s my Aunt Em. I love my Aunt Em!!!”
“Tanks for coming to visit me, Aunt Em & Uncle Josh! I sure do miss you and wish you lived closer to me.”
“Oh! Look! Der’s me in my mirror.”
“Holy smokes! Did you guys see all my chins?????!!!!!!!!”
Later that afternoon Greta and I went down for some creek therapy ~
Playing in the creek never gets boaring!
Sunday the 23rd we got together with the Familie for a much anticipated Rouladin dinner (incredible, mouth watering, favoritest of favorite German cuisines) at one of the German societies. Gavin & Greta were excited to see their cousins. They partook in some early Easter celebrations – hangin’ with their peeps.
We had some live accordion music to accompany this fabulous dinner! It really doesn’t get any better!
Nora had a busy, busy week after our busy busy weekend.
“How’s dis bunny outfit look on me? I wonder if da bunny will come to visit me?”
The following Monday Nora had an appointment for a renal ultrasound. She gets an ultrasound of her kidneys and liver to detect any signs of something called Wilms tumors that children with trisomy 18 are susceptible to. When caught early these types of tumors are very treatable. Nora has never shown any symptoms, but we choose to remain proactive in her healthcare.
“Hi, Lady! You wanna see some hula moves?”
Later on that same afternoon, a nurse paid a visit to give Nora her very last ever synagis shot (RSV vaccine). As part of the procedure, Nora needs to be weighed to ensure she’s getting the correct dosage. As you can see here, we’ve got a real big girl on our hands. She’ll just go on ahead and kick back on this little tiny scale pretending to be a tiny infant.
“Oh, wahhhh! I’m so so little! Someone swaddle me!!! Waaaaa!!!”
She weighed in at 23 pounds, got a shot in each leg and settled right down in just a couple of minutes because she’s big now.
Nora got a real sweet heart in the mail from her friend Catherine in North Carolina.
“Tank you, Caffrinn! I love you too!!”
“I have loved you with an everlasting love; I have drawn you with loving kindness.”
God is love. Whoever lives in love lives in God, and God in him.
(1 John 4:16)
Here is Nora engaging in some belly time during her physical therapy session. She will tolerate being on her belly a little longer if we can distract her with being in motion — on wheels! She would really like for Living Room Bobsledding to be added as a sport in the Special Olympics.
Ohhhh, look at all that sweet, sweet fuzz.
“Hey! Don’t make fun of my fuzz!!”
Last Thursday morning I placed my phone on top of a pile of laundry in the laundry basket that I was bringing downstairs. I said out loud to myself, “Do. Not. Wash. The. Phone.” Somehow in the middle of making scrambled eggs, sausage, cinnamon toast, packing lunches, unloading the dishwasher, administering antibiotics and vitamins, signing papers, washing bottles, breaking up fights, loading the dishwasher, fixing hair, untying knotted shoelaces and Windexing the kitchen table my phone ended up in the washer as I absent-mindedly tossed in a load of laundry. I had just got the big kids out the door and up to the bus stop and sat down to eat my own breakfast in peace and quiet while Nora was still asleep. I rustled around for my phone to check the weather when suddenly the horrible realization that my phone was in the middle of the spin cycle dawned on me, “Noooooo!!!” (A sprint to the laundry room shown in dramatic slow motion). Yes indeed… There was my unconscious, barely breathing, April Fresh phone. As it turns out, I ran and did the very thing I later learned you SHOULD NOT EVER do after your phone has been immersed in water. I plugged it in to see if that would help, which put it at risk for short circuiting. Oops. Meanwhile I’m FREAKING out that I had just lost all my pictures, calendars, contacts, text messages, ETC. Thank goodness for iCloud – I did not lose anything!!! If you ever find yourself as the unfortunate owner of a waterlogged phone, here is the advice I gleaned in my quest for its revival: leave the phone turned off and do not plug it in. Put it in a sealed container of uncooked rice and some silica gel beads (those delicious-looking and enticing DO NOT EAT packets that come with new shoes, etc.) Or you can use the silica gel capsules that came with your daughter’s hearing aide kit………… Allow the phone to convalesce for a couple of days. After a day or two, hold your breath, say a prayer, plug it in and turn it on.
By God’s grace and mercy my phone sputtered back to life. There were still some water marks visible beneath the screen, so I kept it on rice for a little while longer.
It’s been a little over a week now. The water marks have since faded and all seems to be well!
“Phones don’t like water?? I don’t unnerstand dat one bit.”
She gets a real kick out of things!
Happy Opening Day for the Cincinnati Reds! It’s Nora Rosie Red!
Nora cheered on the Reds from home while Daddy and Brudder were at the game representin’.
And now without further delay, I would like to introduce you to our little standing girl!!
Nora went to Redwood School to see if she’d have any interest in a stander. Not only was she interested, she was downright excited!
She’ll stand corrected!
We should be able to have it for her by next week after all of the paperwork and everything is processed!
For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.”