Preparing for Philly

Happy Monday!

Things have been somewhat quiet at the Paradeis household the last few weeks. Dylann's Dash went so awesome! Thanks again to everyone who helped, contributed, and participated! It was an amazingly heart warming day! I can't wait to watch this grow year to year!

Our trip to Philly is coming soon. We will be gone Thursday 10/8 to Tuesday 10/13 for her first visit. This is for her casting redo on her feet. Micah and grandma will be tagging along too. He wants to see his bestie Alayna and I know he's starting to Feel a little left out of things.

The only issue were running into is me trying to get FMLA. I've gone around and around with our vendor and get nowhere. They've only approved my time in Philly but don't seem to feel the same concern for her recovery time in the cast when she can't be at daycare. We will make  one last attempt when I go out on October and can get a MD letter and 4th version of the form. Otherwise it looks like I'll be in the market for hiring my own PCA or in the market for a new job.  I'm working on locating potential candidates.

So knowing this might happen I spent the better part of last week trying to get medical assistance for Dylann to get PCA. Well apparently they are not too interested in giving us that with our income unless I pay a hefty parental fee for MA tefra. To even be considered for that she has to be certified disabled by Hennepin county's SMRT process. That's unlikely. The Hennepin county SW I talked too did tell me that I sounded somewhat intelligent so I could probably figure out the 30 page application and really anyone who was somewhat "intelligible" could do it.  That brightened my day. :). I'll private pay :).   So, if anyone knows a PCA looking for a new job, send them my way!

Going back to Philly....

Things have been busy this week! Dylann has been so excited to practice her walking behind her walking toys with our help. SHe is so motivated the last few weeks! We got great news that the Tim Orth Foundation is going to help cover our costs to travel to Philly this Fall which is so awersome! That takes one major weight off our shoulders! Its amazing. We got the call today.. dates are set. We go to Philly October 9th to the 13th to do a few casts. Then we go back November 12th to November 23rd to get a few more casts and her hip surgery on November 18th. So Miss Dylann will spend her second birthday in Philadelphia getting casted :). Poor Dylann. Ill try to take her somewhere fun that night. When I got that call, it was a mix of feeling calm that I now have a plan but then anxious because now it is more real. I filed my FMLA claim so I can be gone from work on and off those three months. Its going to be busy and hard but I feel much better knowing that this MD is the one who is going to do her surgery. Now, just to tell our MD here that... We have spent this whole week outside of work getting Micah ready for Kindergarten and finalizing all the Dylanns Dash stuff. Hope to see everyone there!

PHILLLLLLY!!!!!!!!!!!!!

So, we made it. Almost missed the flight due to horrible 4th of July weekend traffic coming from up north, a bag that was 7 pounds too heavy, and confiscated juice for the baby.. but we made it. 

 Saw Dr Van Bosse this morning after our 11 month wait!!! It went well, much like all the other appointments we have had meeting with a new orthopedic MD and they do a full exam then tell us the recommendations. Although, today even hearing stuff all over again, it felt much different since I knew I was talking to someone who I trusted to treat things. I will say, the list was longer then I expected. 

 For her feet - he said she did have some good degree of movement, however he doesnt feel they are perfectly aligned. He recommends another 6 or so casts and possibly another heel cord release. We talked alot about if we should do a cast today then another one friday before going home but he really wanted to be able to have time to make her some new braces and I cant stay into next week. So, we utimately decided not to cast today. 

 For her hips - her left one needs to be re-located which isnt new news. He likes to do them as close to 18 months as possible, dylann is 19. He talked to his nurse while I was there and discussed his surgical schedule flexibility. When I made this appt 11 months ago, his surgical wait was 2 years so I assumed the earliest she would be able to see him for her hip would be next spring. He said they are working to get her in for October! He also said her right hip, while not dislocated, is tight. He would like to do a tendon release around the same time as the hip surgery to gain some more motion. 

 For her knees- he said that he doesnt do surgery until kids are 4 on knees. He would like to make her taller braces after her feet are realigned that help stabalize her knees in the mean time. The surgery would be to release the tendon on her left and then on her right, he would add some plates that would impact the growth plates so that as she grows, the knee will naturally align and then they remove the plates when the knee has gained some straightening. Amazing. 

 We spent alot of time talking about how this works for out of state folks as I know many of his clients travel very far to see him. Recently I heard Peru. He said once the surgery date is picked, he can do 2 casts during a 5 day stay, then maybe two more in MPLS with my current MD, then do 2 more while we are out there for her hip surgery. That would be a 1.5-2 week visit then. He said she could go home after her IP hospitalization until her 6 week follow up where she would come back to get her body cast changed.

 Dylann also saw the upper extremity specialist just to make sure they didnt have any recommendations. They didnt at this point. She still has mild affect to her fingers and wrists but that effect is still better then what they can usually correct for anyways. she suspects the little issues Dylann does have will just continue to get better as she uses them and strethes them. 

 Dylann was a trooper but by the end when someone new walked in, would just yell "bye bye". :) She feel asleep waiting for our cab ride back and didnt wake up while I transferred her into the cab, out of the cab, and into her crib then to wake up soon after pretty exhausted. spent much of the night laying on me until she asked to take a bath. Finally just now got her down for the night. 

 So obviously Jeremy and I have alot to talk about to see how we can make this work. I initially thought I would be considering one or two visits for her hip next year.. now its a discussion of probably 3-5 visits between September and November of this year. I really want him to do it. I know he is the best. I know we will find a way. 

 Dylann and I will be coming back Thursday so just plan to do girls trip for a few days. Having dinner with a coworker tomorrow who works in the Philly office. Got to see Cari and her sweet Jamis today as they were in the clinic too. Some of you met her at Dylanns dash last year. They live up by Morris and her AMCer is a little younger than Dylann and also sees Dr V. Making a little AMC family!  

Ok, time for sleep!

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!