Isabelle Bentley

At the beginning of February Izzie went to the ER 5 times in 2 weeks including one hospitalization. She went by ambulance three times - twice from school. All for asthma and breathing issues.  It resulted in a few different inhaler meds and a nebulizer for rescue inhaler. 

It's hard to believe this chica is the same girl that needed to be brought to the ER from her doctor's in an ambulance because she was too unstable to go in the car :( Her school called me to get her because her oxygen SAT level was 95. SO I brought her to her doctor and they couldn't get it up even after two nebulizers so they needed to call the ambulance.  In the ER, she got another nebulizer and steroids. It helped a little but not much. SHe had a scary episode where she needed racemic epinephrine which helped a lot. She had a chest and neck xray and all the swabs for flu and rsv came back negative.  She does not have a fever either. She got admitted over night just in case.

Guess who landed herself in the ER and got admitted? By the way she sorted these in size order a few times.  Luckily it's only dehydration and the stomach flu. She left the next day. I have never been more scared because I was administering the SATs and couldn't leave. She was pale white, no fever, lethargic and vomiting. 

Isabelle spiked a random fever that came on around 8:30 and got to 103.3 so I took her to the ER.  She also has a weird rash and what I think were two small febrile seizures. It could have also been rigors. They checked her urine and concluded it was a virus not bacterial. She left with a 98.4 and hasn't had a fever since. 

Isabelle spent 5 hours at the ER this morning because she was coughing incessantly. They gave her 4 days of steroids and albuterol. 

I am so proud of Isabelle. She's eatin stage 3 chunky food. And she eats all the food we give her off our plates. And puffs and this baby Jax stuff. Some kids with DS have sensory issues and need purees much longer. You may notice that she is in the ER above. Another trip due to her turning dark purple on her hands and feet for a few hours. They did a chest xray. They are clear. Her SATs were 96-100.  They also did an ekg and called her cardiologist. He basically said he's not worried. He said some kids with ds just do this and there is no explanation for it. She had a cyanotic episode.

Aye aye aye. So Isabelle had croup a month ago. It got better and went away. And then yesterday it came back. So I took her to her doctor's offices urgent care and yikes. So, she has these small spots on her upper back called petechiae. You may need to zoom in on this picture to see them. They are broken blood vessels. Most often they are caused by coughing or vomiting. However, when those are the causes - they appear on the neck, under eyes, chest, face and/or inside of the mouth. Not ont he back. And... adding to that, she has them in other places as well, like her legs. It's not a good thing for them to appear below the chest. Add to that that her liver felt slightly enlarged and that kids with down syndrome have a 2-3% chance of getting leukemia and that those are symptoms of it... and the doctor basically said we needed to go to the ER right now. The good news is that her lungs sounded mostly clear and that she has vomited or had a fever. And is eating just like norm...

Izzie's first trip to the ER :( She woke up at 3:40a breathing really hard. Very scary. Luckily, it was just croup. They gave her steroids and sent us home with instructions for how to deal with it at home.

She's back up to 4lbs 6oz. She needs to keep gaining though. I ended up in the ER tonight with massive pain and gallstones but was released - need to get surgery in the next few weeks. HUGE thanks to Amber and Jeff for watching Izzie and Scott's mom and dad for taking Jack. DOn't know where we'd be without help from great friends and family. <3