Today is another day. The weather is kind of cold and gloomy. Troy said that the forecast shows it clearing off and turning to sunny skies this afternoon. I hope the tide inside our house turns as does the weather. This morning Ky broke yet ANOTHER extensions tubing. The Zevex bags have this red Christmas tree thing on the end that attaches and stays locked in GREAT. Too great. We keep breaking the extensions trying to get them disconnected from the pump bags. We are supposed to change the pump bags daily so even though she is on continuous feeds now we still have to mess with the connection. So not only did the pump leak on the bed so did the contents of Ky’s stomach. Never a good way to start the day.
To change the tubing I have to rip all the tape off the parts that are taped down… she hates that. And mess with her Mic Key button- (gtube button) and that is a penalty worse than death for her it seems. She screams like she has been shot, kicking, flailing, anytime I get near the thing. So I get that taken care of. Her butt rash is a mess, her cathing is down to nothing, and she is in a generally crappy mood today. I noticed trying to get her dressed this morning… her balance is REALLY off today. I don’t know why but I swear to God if I didn’t know better this balance thing coincides with the weather. She couldn’t stand up- fell over three times, then I finally got her up to try and put her pants on and she went to sit in my lap and missed …. she backs into you lap kind of like a mack truck… well anyway she missed and managed to spring forward onto her head… she looked like a pinball bouncing from butt to head. And then I FINALLY nearly 15 minutes of struggle later, get her backpack on and she acts like its the heaviest thing in the world. She is nearly crawling trying to keep upright. It only has 300 CC in so its not all that heavy!
Well I have to run she was just walking down the hallway and fell over on her head… again. Now she is crying… its like her legs just let out from under her. She is really pissed that she cannot get it together this morning. I feel for her.
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Ugh Amber
Eithene totally has these days! On sunday she had a bad one- could barely walk- kept falling all over, could not wear her backpack due to her terrible balance and fatigue that day and was generally the crankiest most unhappy kid. THe next morning she had a rotten PT session- just stared blankly at everything. SHe has these days about 1-2 times every week. SOme days her fatigue and hypotonia are just incredibly worse than other days.
Poor Ky- I know how hard it is to see her that way
Oh, and when did you go on continuous feeds- How did I miss that after all the talking we did about it last week? did she just switch?
ANd here is something funny/scary- when Eithene used to have the long GJ (before the Mickey GJ she has now) I’m sure you’ve seen the long PEG tubes, right? Well once we actually BROKE off the tip of the red zevex tubing INSIDE the long tube connector port! We spent HOURS trying to get it out- it was jammed in so tightly, and finally it crumbled into little bits and went down INSIDE her intestines!!! We freaked, but it all came out ok
I hate the stupid tips of hte zevex bags and how they break. We have broken more than one of them.
ANyway, hope Ky feels better soon. DO you think it could be her Chiari? Shelly Rawlins (another VACTERL mom- do you know them?) always says that her son Danny (who has chiari) always has a hard time when the weather changes. Hope you figure it out!
Jessica
http://www.caringbridge.org/visit/eithenerosehilliard
Yes… I do believe it could be the Chiari. I see huge changes in Ky with the weather. I even KNOW when the weather is going to change by how Ky is acting… its wild. I have MET another child who has Chiari and synringomyelia… and that little girl is the only other one that I have ever seen who ACTS like Ky. Its things I cannot describe like weird little jittery twitches… and never sitting still and always moving and just little nuances that I didn’t realize were so PROMINANT until I stood her beside another kid…. so. I dunno. Our great neuro here thinks I am crazy.. there is no way a 2 year old can be symptomatic of Chiari, Dr. Frim (bow tie man who we waited 7 hours on) believed me but said there is not much we can do about it.
Who knows…
Oh Amber, I hope the sunny skies to come bring more answers and clarity. That Ky sure is a trooper!! So are the rest of your bunch I am sure!! You’re a great mommy!!!!
Mindy – Ellie’s mom