Neuro & my sweet niece

Yesterday was a rough day for us. Autumn started running fever at 3:30am. By morning she had no fever & we had a long day planned so off we went. She had therapy & was measured for a brace to help her core strength in PT. I also discussed bracing with the rep & she is going to brainstorm what would be best. During both therapy sessions, Autumn needed suctioning constantly & either her vent of oxygen to keep her sats up. She would go into the 30's...I was already tired by 11am. We came home for a quick lunch & for me to call her wheelchair company. I had to get angry with them because we still have a broken wheelchair & it's been over a month. By morning they did not know how much longer but after my fit...I got a call at 4 pm that they were ready to schedule her chair to be fixed Fri or Mon. I could go on a long vent about this but I won't because I am sleeping right now. ;) We then headed off for our 2pm neuro appt. I swear we suctioned Autumn every 2 mins for over an hour...it was crazy! She also had to have oxygen on or she would desat. After waiting & suctioning for over an hr we finally got called back. I told neuro about the increase I have seen in Autumn's staring speels so they increased her seizure meds a little so hopefully it will help. Autumn's suction machine almost ran out of battery by the end of the appt & we headed home. By the time we got home at 5pm, Autumn was pale, lethargic, & running a temp. She started having chills as well. I got aggressive with breathing treatments. It seemed to help..she ran a low grade fever today & was tired but started perking up by the end of the day. I think this week just did her in from all the appts we had & the sleep study may of pushed her a little too hard & then the slight aspirating from the swallow study probably did not help.

I want to about my sweet niece. She wrote a report for school about Autumn. It talked about her Monday on spring break. She said how we went to the Arboretum together & how Autumn started crying. She talked about how Autumn has spina bifida & she can not walk or talk & probably never will. She told how she even eats & breaths different than we do. She told how Autumn is almost always happy & cheerful. She talked about how that night she got a torn in her foot & it hurt really bad. She said she thought about how Autumn probably goes through the same or more pain than that. She said how we complain about the tiniest things and she is not sure about you but she wishes she could be more like Autumn. Yes, I cried when I read it. To know Autumn's little life is having an impact & influence on my 10 year old niece makes my heart so happy! My niece was also asked to read her report to the class which makes me proud her words can now impact the thoughts of her classmates.