On Dec. 12, Levi ended up in the hospital with difficulty breathing. An ER trip led to an ambulance ride to Kosair Children's Hospital in Louisville, which led to a few days of Levi staying in the hospital on oxygen. I had a flight out of the Louisville airport to do a teacher training, in case you're wondering why we chose that hospital (we usually choose Cincinnati Children's).
Wes stayed with Levi while I was gone on Friday and Saturday for work. I arrived at the hospital again Saturday evening, and Levi was discharged Sunday afternoon. Sunday, after we were told we were going home, Santa visited and brought Levi a gift. All was merry & bright, and I asked if Levi's ears could be checked.
We had a flight to Texas the next day & they said Levi was fine to fly, but I sure didn't want to get him on a plane if he had fluid in his ears. When he gets congested, he can get ear infections quickly. Apparently there was wax blocking the doctor's view & she couldn't tell if he had fluid in his ears or not. the nurse irrigated his ear to clean it, then the resident came in and used a tool to scoop out wax...and while I was holding him down, the doctor accidentally punctured Levi's ear drum. I was so upset. First of all, I almost passed out from watching that blood pool up in his ear as he screamed and arched his back in pain. Then I was so angry I didn't even know what to do. I was silent when the doctor came in to apologize.
The good news is it was actually better for him to fly with a punctured eardrum because there was no pressure for him to deal with, but I couldn't get it out of my head that my sweet guy was hurt, and I let it bother me for a few days.
The boys were troopers on our flights to Texas. They were so well behaved & really enjoyed themselves.
We stayed in Rosenberg, where Wes & I lived when we were first married, so I was grateful to have help with the boys. I had a fun work party to attend the day after we arrived.
After my work party, the boys & I headed down to Corpus Christi to visit my parents. The next morning, Levi slept much later than usual, was extra clingy, and fell back to sleep by 10am. During that rest, his breathing was rapid, & I got a pulse ox reading of 86. Once he woke up & I got him to the ER, he was struggling less & his pulse ox was higher, but each time he fell asleep, it would drop below 90 so he was admitted & stayed 1 night but didn't get to leave until after 7pm the second day we were there.
This is my brother visiting us while Levi was awake.
And here is Levi shortly after he fell asleep.
We did get to see the ocean from his room & had a relatively good experience at the hospital (minus the ridiculous discharge procedures). The doctor in the ER really wanted to know exactly what Levi was dealing with. They did several tests and found out he had RSV.
And we got to visit with my dad & brother even while they were working since they both work at Driscoll Children's Hospital.
They gave Levi an oral steroid that he hasn't taken before, and it made him as grumpy as could be. It was awful. He would play for just a few minutes and then nothing could make him happy. He would slap me, push me off his bed, and then be crying for me to hold him a few minutes later.
Those two days seemed to be much longer than they were, and once he got out of the hospital, he had 3 more days on that steroid. Not fun.
Wes was determined to see me on our anniversary so he drove 20 hours straight once school let out. He had a cousin ride along to keep him company. They had a fun trip & his cousin flew home from Texas. I was glad Wes wasn't alone on that long trip, and really needed his hugs after the last few days I'd been through.
Wes, Adam & I all seemed to have the same virus Levi was dealing with, but I felt good enough to take my niece out for a mani & pedi while everyone else rested. Can you tell I was happy to be out?
We didn't get to do as much on Padre Island as I had hoped because of Adam's cough, but the entrance to this souvenir shop was one of the highlights of his trip. When people ask about his trip, he tells them he got to fly on a plane and climb on a shark's teeth. Look closely to find him in this picture.
This picture of my Dad & Levi is one of my favorites from our trip.
Although the trip wasn't what we expected because so many of us felt bad (my brother's family & parents included), we were all so happy to be together.
In case you haven't seen "Fireplace for Your Home" on Netflix, it is a great way to enjoy a crackling fire when you are a mile from the beach & it is really too warm for a fire.
Levi understood Christmas this year & loved delivering (and opening) gifts.
Adam was determined to have special PJs for Christmas Eve (which is when my family has always opened gifts). He didn't want PJs with Santa ON them, he wanted PJs that made him look like he was wearing a Santa costume. I was so happy to find some online, and he was so excited when he found them sitting out for him after his bath.
Adam had his heart set on getting a Dream Lites Pillow & a Flipeez Hat. Last year he wanted those Stompeez slippers where the animal's mouth opens up with each step. This year, he'd ask for the Flipeez Hat (after apparently seeing a commercial) and say, "Mom, they're from the people that brought me Flipeez!!"
My brother's favorite gift was this lamp. He keeps the 24 hour marathon of "A Christmas Story" playing every year, and he opened his gift just as the lamp scene in the movie was on. If you look closely through the glare, you can see the lamp on the TV screen.
We had a happy and memorable trip.
And it was only the first "leg" of our holiday travels. More posts to come.
Saturday, January 4, 2014
Wednesday, December 11, 2013
What I Don't Have to Say
I keep wondering why I don't blog as much as I have in the past. I think it is partly because Facebook is faster and easier. Another big part is that I don't have much to say...and that is a good thing. When I started really doing some intense writing here, it was because I was navigating my way through this new world of parenting a child with Down syndrome. I had causes to support. I had beliefs to share. I had a mission of sorts...to let everyone know that we were going to be okay. The more I shared that, the more I felt it and believed it in my heart. Maybe I'm not blogging much anymore because I don't feel like I have to prove that we are okay. We really are okay.
I am not sad about any milestones Levi has yet to reach, because I am even prouder of the way he makes people feel and the way I see him light up people's eyes when they talk about him. I am not overwhelmed with all the doctor's appointments because the doctor's and nurses are also crazy about him, and I've become accustomed to the busy schedule that comes along with Levi's health issues. I am not worried about his future, because I am okay with whatever the future holds for us. I am not pushing complete independence for him in his adulthood because in all reality, he may always need some sort of support. That has taken a huge weight off my shoulders because I no longer feel like I am failing him if he can't do every single thing other people his age can do. It is just our reality, and it is okay. Each day I am with him, the more I want to hold on to him forever, anyway!
Lately we have been doing some home improvements and decorating. I have been having fun with trying to get my wardrobe updated, and have actually put some Pinterest ideas to use. I hope to make my blog more about me and add some variety. Maybe a few informational posts here and there like I used to do, but I want to break away from the mother-of-a-kid-with-Down-syndrome box. Maybe I'll blog more and feel less pressure to do what I've always done in this space.
Big brother is enjoying all things Christmas. I have been waking up to his conversations with Chip, his elf, and I am savoring the magic. We have a lot of fun ahead of us.
| Levi in his Bible class |
Lately we have been doing some home improvements and decorating. I have been having fun with trying to get my wardrobe updated, and have actually put some Pinterest ideas to use. I hope to make my blog more about me and add some variety. Maybe a few informational posts here and there like I used to do, but I want to break away from the mother-of-a-kid-with-Down-syndrome box. Maybe I'll blog more and feel less pressure to do what I've always done in this space.
Big brother is enjoying all things Christmas. I have been waking up to his conversations with Chip, his elf, and I am savoring the magic. We have a lot of fun ahead of us.
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