June updates

BE WARNED-- THERE ARE POST SURGERY PICTURES.

Happy almost summer everyone!

Dylann finally had her band surgery two weeks ago. It was pretty easy compared to prior ones. She was back to herself within a few hours. Other than her utter disappointment she couldn't swim with Micah Saturday, it's as if it didn't happen. 

 We got to see the results today and they look amazing!!

Before - you can see the crease mid calf.

After- no more crease! Amazing!

The MD was very happy and said she could swim 4th of July weekend.

Today we also got the wonderful news that Governer Mark Dayton supported the proclamation for June 30th AMC awareness day!! So exciting. 

Two weeks were off to Philly and the dash in August! Then hopefully Dylann's final surgery in September. Lots to look forward to. 

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

April Updates

Its been a busy few weeks. First, Dylann's surgery that was scheduled for 4/2 was cancelled due to her being too congested. This was the one where they were going to correct her amniotic band markings on her right calf. Mommy was ok with this. It has been rescheduled for 5/7 as long as she stays healthy. 

 We had her wonderful event 3/28 with the Tim Orth Foundation and 12 other wonderful families who got some financial assistance towards the medical expenses. It was such an honor to be a part of that event and it was a great evening! Thanks to all of you who came out that day and supported us!!

We went back to check her weight last week due to her not gaining anything in the last 4 months and we were questioning celiac. Guess what?? SHE GAINED 1.5 POUNDS!! We finally have an eater on our hands. So, our MD has no concerns about her growth at this time.

She has been working hard in therapy to try to start doing some weightbaring. She uses a stander during sessions and will be getting one to take home soon. In a few months, they will be working to get a gait trainer from our insurance but want to be sure we get the best one for Dylann. She definately seems to want to stand up. She will also be starting pool therapy after she heals from her May surgery.

We still are planning to go to Philadelphia 7/5 to see the expert. I am not sure if we will continue treatment out there or not at this time. I really want him to see her and let us know what his treatment plan would be for her knees and hip then we will go from there. Other than that, we have just been doing alot of talking and praying about what to do regarding her hip. No matter what doctor we see there are risks. No matter which one we see, the preferred time frame is to do this major surgery between May and November. No matter what doctor we see Dylann will need to be in a full body cast (arm pits to toes) for at least 12 weeks. This will take alot of changes for our family. She will not be able to go to daycare and if one of us takes FMLA to be home with her, we wont be able to pay for her spot to hold it. So, we dont know where our lives will be in the next 3-6 months. More to come!

We're buying shoes!!! :)

Braces are in!!

Dylann got her casts off today. Her feet got stretched back to a neutral position and looked great. She was not a super fan of the nurses today though. They'd look at her and she start crying.

She then had her physical for her surgery in two weeks. She will be having her band markings on her calf fixed on the skin. It should be day surgery.

Then we went and got her new braces!! No more boots and bar. These things are so amazing that she can wear shoes over them! I get to buy my daughter shoes.. for the first time ever! I can't even tell you how excited that makes me. 

Dylann also got weighed and measured today and gained over a half pound and an inch in a month! This is also huge in our world lol.

That's all for now. We are driving to Hutchinson for a recipient dinner for the jam the gym event the 28th where Dylann is one of the kids receiving money towards medical expenses. If anyone's around next Saturday night, come on out to glencoe!

More casts...

Dylann went to Shriners yesterday. They made her homemade AFOs for the day and night that will help her weight bearing but also keep her ankles rotated at night. They didn't like her tightness from being out of the bar so she's back in casts for two weeks. She was not pleased apparently with that turn of events.  She also gets a little walker her PT wanted for us to work on strengthening her legs.  She says ...HELLO..

March updates

The first week Dylann had her boots and bar she cried and screamed all night. Since her left hip is dislocated it was very uncomfortable for her to externally rotate her leg and it was pushing her leg our versus turning it. So we took the bar off and just left the boots on to keep the heel cord length. 

I emailed our Philly doctor and he sent me some pictures of other options for new braces and copied our local doctor. So she's getting those bar-less ones on Thursday. Hopping this will help with some weight bearing in therapy as they're higher on her leg.

April will also be Dylann's third surgery. Her plastic surgeon wants to go correct her deep amniotic band marking on her calf so it doesn't cause regression on her clubfeet or start to restrict blood vessels. While this one should hurt less she will be under anesthesia three times as long.

Lastly we just had Dylann's 15 month visit last week. She's made it back on the  growth chart for height!!! Yahoo. She however didn't gain a thing in 4 months causing her to fall off the charts from 20% at the last visit. While it could certainly be a result of a crappy three months for her with two hospitalizations, a surgery, and a few viruses, were testing her for celiac based on a few symptoms she's had in addition to the growth slowing. We should no more next month. 

March will be busy with Micah and I going to Canada Thursday for 5 days and then Micah turning 5 :( and Dylann's event 3/28 where she is a recipient of a grant from the Tim orth foundation to help cover some of her medical costs. 

Have a great month!