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.
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.
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.
Someone really sweet and happy came to visit with her Kelly in Mommy’s office.
“So if I hold down da icons I can move dem around!!?”
“Wouldja look at dat?! Dats kinda neat!!”
“Aeaehhh… I’m not sure about dis headband, Sister!!”
Rainbow spot in the evening clouds ~
Thursday morning we got our act together in time to walk to school.
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!
“Dis place looks kinda fun!”
Nora and I saw a rainbow spot on the way home!
And three birds waiting for us back home!
“I hang out here at home and play with all my things.”
“An just when Mommy thought I couldn’t get any sweeter and prettier, I show up in this pretty headband!”
“I’m a little lippy at times.”
“And sassy too!”
“Not like that means anything anymore though, right Mommy n Daddy? 😉”
“We’ll just be hanging out here on the couch if anyone needs us!”
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.
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.
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)