Surgery Updates

The blog post views have significantly went down in the last few months so maybe people arent as interested in getting updates through this venue anymore. I kinda find it cathartic so I am probably going to keep doing it anyways even if no one is reading it LOL! 

 Dylann had a big week. First, we scheduled her hip surgery for Monday September 14th. This may change after we see the Philly specialist but wanted to get it on the calendar. We are still trying to exactly work through how the fall/winter will look with her being in a body cast for 12 weeks. It would be much easier to do it here for that reason but if it feels like doing it in Philly is better, than that is what we will do. So, we are planning for the potential that one of us may not be working for a bit. So, many of you may already know this, but we put our house up on the market a month or so ago. This is our first step to try to work one of us out of working for a while until we can ensure Dylann has what she needs and for many other reasons. We have other plans if that does not pan out. We do not want to move micah mid kindergarden year so not much time is left for a sale to come through leaving enough of a window to allow for the move time. Debbie, if you are reading this, it is probably ok to advertise our house on Facebook now :) The cat is out of the bag and was one of the things I was referencing in my posts last month where the Paradeis family is working to make good changes for our lives. 

 So, enough about me :) Scheduling that surgery was hard. The nurse told me it had "to be a day that had a respiratory therapist would be available due to it being potentially a day long surgery". That made it hard to concetrate the remainder of the day. I know it is the next needed step but is very scary to thinking of your child going through that. I guess we kinda have a trial run next Thursday which will be our 3rd attempt at her amniotic band surgery which will be about 2-3 hours.

 She had 3 appointments today so daddy was busy. First she had her surgical pre-op then PT at Gillette's. While I am not a super fan of the orthopedic department at Gilettes, their PT/OT dept is top notch!! Dylann came home with a gait trainer today. While she pretty much hates it, she did manage to go backwards a few times between cries!!

Then this afternoon we went back in for our re-weigh to ensure there are not concerns for not growing. Well, as momma argued last time, it is situational when she is stalling growth (hospital stays, sickness, etc.) She grew an inch and gained a pound in the last 3 weeks! she is 4%height and 5%weight now which is the highest she has ever been! I would say, all in all, we had a good day today :)

May updates

Hi everyone,

Things have been a little busy this month so thought I'd write an update.

Dylann was supposed to have surgery May 7th. This was the one where they were going to do some plastic surgery on her amniotic banding on her calf. It was our second attempt. On our way down there, she threw up. Ugg. We called and they said to still come and they'd assess when we got there. By the time we got down there she was pale and yellow and lethargic so they canceled it. About two hours later when we got home and she ate, she was back to normal. Lol, oh miss Dylann. She's a smart one. 

Over that weekend she seemed fine then Sunday and Monday she started not eating and waking and screaming at night. I brought her in Tuesday just to make sure she didn't have an ear infection or something. They concluded teething! LOL. Another strong parenting moment. They did however start to talk about weight concerns again. Apparently she lost a little weight since the month prior. There was again talk of failure to thrive and want us back in a week or two to decide if they'll do the full battery of tests. The girl is 2% height and has 9 month old size feet, I'm not sure how heavy they expect her to get. Well see. She's been eating well and sleeping again. 

Got a call today and the third attempt at surgery is set for June 4th. Fingers crossed.

Otherwise we've been planning our Philly trip and the second annual Dylann's dash. Dylann and I will be leaving to see dr Vanbosse in Philly Sunday July 5th and will stay there till Thursday or so. After that appt we will decide on hip surgery plans. I also want a plan for her right knee.

The 2nd annual Dylann's dash registration has officially opened!! Save the date or better yet, SIGN UP.. August 29th in eden prairie. Www.dylanndash.com