I didn’t get a chance to put a post up last night because a certain little someone in our family decided that she wanted to stay up very late. Then the threatening weather was upon us. I gathered up all the necessities lest the electricity should go out and then attempted to get some sleep once Nornor fell asleep. Just as I started to doze off, a deafening crack of thunder nearly caused me to snap my spine in half from jumping up off of my pillow at 100 mph. If William wasn’t already sharing his bed upstairs with a hyperventilating 7-year-old little girl, he certainly was now!!
About an hour later my sleep was once again interrupted by my phone making some weird emergency alert sound that I’d only heard it do once before. Upon further investigation it was indeed an emergency alert: TORNADO WARNING IN YOUR AREA. SEEK SHELTER IMMEDIATELY.
Um… Okay then!!! Looking around at everything I needed to bring down into the basement, I decided I needed further information and turned on the TV. Fortunately we were in no immediate danger as we were not in southern Boone County. As a courtesy I DID text William upstairs that there was a tornado warning (question mark) and went back to sleep.
It figures the night that Nora sleeps great that that the weather would freak out!
Yesterday night Nora was exceptionally crabby and it proceeded on into the next day. I became a bit nervous when I monitored her oxygen level and saw that it would drop considerably when I put her oxygen flow back down to an 8th of a liter. We’d boosted it up to ½ a liter or sometimes ¾ liter when her boogies were at their worst – just to make sure something was getting through. She didn’t seem so congested anymore which is why I experimented with lowering back down. We wondered if her oxygen saturation had anything to do with her unusual fussiness and felt that an assessment by Dr. Bolling was in order.
Of course we got there and Nora made a total liar out of us. She was happy as a baby in a bath tub! She had lots to say to Dr. Bolling and didn’t have any obvious symptoms that raised any red flags. The oxygen desats are very typical with a cold, and she does still have it. We surmised that Nora missed Dr.Bolling and just wanted to come in to say hi! He did prescribe some amoxacillin as a preventative measure on the off chance that her ears were giving her trouble, or if there was some sort of sinus infection going on. Her ear canals are so tiny, it’s almost impossible to see if there is anything going on in there. Sigh of relief and a big fat reminder to STOP WORRYING!!!!
Also yesterday we were excited to hear of another little girl that lives locally with full trisomy 18. She is EIGHTEEN YEARS OLD! Our mutual contact is going to see about putting us in touch with one another! I’ve been so excited to hear about this! Of course I have talked with several other families online or on the phone with children who share the same extra 18th chromosome as Nora but I have never met any of these children in person. Before Nora was born I had never even heard of trisomy 18 / edwards syndrome. I love how there are groups and organizations focused on children with downs syndrome. It seems like these families get to join another great big precious extended family. So many of these awesome families have befriended me even before Nora was born and I am so incredibly blessed by that. While there are some similarities with these extra chromosomes, such as the heart defects, they’re still different. Not knowing any other trisomy 18 children in person can be a little scary. They are so rare to begin with, but also rare that they survive. (I logically realize that and do NOT like or need to be reminded of that.) To hear of a girl locally who is EIGHTEEN gives me so much joy and hope. Obviously this child has been cared for by doctors and specialists throughout her life who were eager and ambitious despite her diagnosis. We definitely have been bestowed with like-minded doctors. I am wowed by the prevenient grace that God has heaped upon us – that we live 20 minutes away from Cincinnati Children’s Hospital, one of the top children’s hospitals in the nation. We never knew a child of ours would be dependent on unprecedented medical care. But God did. And here we are.
From one man he made every nation of men, that they should inhabit the whole earth; and he determined the times set for them and the exact places where they should live.
(Acts 17:26 NIV84)
That is wonderful to hear!!! I cannot wait until you meet this precious girl. Such encouraging news!!!
Chills again! Isn’t it crazy to see that as your life unfolds God put you and others exactly where they were meant to be. Oh and even though God doesn’t want us to worry, mommy’s are just wired that way. I always think you should have a healthy amount of worry. Enough to make you go to the doctor to ease your mind and keep you from finding bigger things to worry about.
Hugs to the whole family!
Your blog is encouraging to me too as we wait for the birth of our precious granddaughter who has Trisomy 13. Adalyn also has hypoplastic(sp?) left heart, but we are praying for miracles for her! Watching Nora gives me hope and joy!
You certainly aren’t the only one that was bothered by weather alerts via their cell phone last night. I live in Campbell County, and granted while the alerts weren’t for my county, I have it set to go off for Boone, Kenton, Campbell, Pendleton, and Bracken…so I was getting the alerts. On would go the tv…and then I’d watch it for a few minutes, alert was cancelled. Then it was back about 10 – 20 minutes later! So back on went the tv! Thank goodness it wasn’t too bad and didn’t last too long. I’m so excited to hear about a young girl with Trisomy 18 who is 18 years old! One day after thinking about Nora, a few months ago, I did some investigating and stumbled on a support website of some kind, and I was focused on finding these memory pages made for children who were still here. Lastly I wanted to comment on the picture of Nora sleeping on your lap! Too funny! Can she just sleep anywhere?
I live in western Clermont county and our weather radio went nuts last night. Was so relieved when I saw it was south of us! Glad all are safe… And what a gift to find a 18 year old! 🙂
Its put a big smile on my face to hear about the gril that lives close to you and that she’s 18!!! What an amazing thing for your family to hold on to. Sending your family a little prayer and a big hug!
I love that little chub on her arms 🙂 Thank you for always being so positive and hopeful. It is such a great reminder to me that even with the challenges I face each day, there is always someone so hopeful right around the corner. You are such a good sweet Momma. Hugs
This is so awesome! I hope your meeting is blessed and delightful. I’m glad you all are here, I’m glad I know you. You have an amazing family, I hope to hang out with Nora again soon!!
What a precious gift to find a teenager living with Trisomy 18. I always look back with gratitude and thanksgiving that when we were given our Trisomy 18 diagnosis we were also told that our child would get the excellent prenatal and postnatal care possible. I can’t imagine not having access to such great medical care. Looking forward to meeting Nora’s new friend!
SO GLAD TO HEAR THAT YOU GET TO MEET THE 18 YEAR OLD GIRL. I KNOW SHE IS GOING TO LOVE LITTLE NORA. I DO NOT KNOW THIS 18 YEAR OLD, BUT I AM SO HAPPY FOR HER. SHE HAS BEEN BLESSED, LIKE WE ALL KNOW LIFE IS UNPREDICTABLE FOR ALL OF US. SO GLAD SHE LIVES CLOSE AND THAT YOU ALL ARE PROBABLY GOING TO GET TO KNOW ONE ANOTHER. WHEN YOU MEET HER, PLEASE LET HER KNOW THAT SHE TOO WILL BE IN MY PRAYERS. I LOVE THE PICTURES OF NORA LAYING ACROSS YOUR LAP. SOMETIMES THAT WAS THE ONLY WAY I COULD GET MY BOYS (MEN NOW) TO BURP. SO HAPPY NOTHING WAS WRONG WITH NORA, BUT A STUFFY NOSE. MAYBE THE ANTIBIOTICS WILL HELP HER CLEAR UP FASTER, SURE HOPE AND PRAY THEY DO. GLAD THE BAD WEATHER WAS NOT IN YOUR AREA. GOD IS WATCHING OVER HIS “LITTLE PROPHET” AND HER FAMILY. LOVE AND GOD BLESS.
18? Awesome! But, unless you meant months not years, that is no little girl but a young woman well on her way to adulthood.
Hey Aleisa, I am a nurse and would worry also. So, don’t be too hard on yourself when you worry about little baby Nora. You are just being a good mommy!
How could you NOT worry about that beautiful little face! LOVE HER! Prayers are with you, Mommy!!