Preparing

Reality has started to set in. I booked our flights back to Philly. We leave in three weeks then four weeks from tomorrow she has her hip surgery. Return flight is set for the Wed before Thanksgiving so really hoping something doesn't delay that.

The last few days have been sort of up and down. Sunday afternoon I took the kids grocery shopping. Dylann is starting to have more toddler moments and this day was no exception. She was screaming and throwing a tantrum for most of the 20 minute visit. Usually that wouldn't bug me too much but for some reason it feels like people look at me different then with Micah. I get lots of stares when she's casted. It quite possibly is all in my head but i worry people are judging me like I contributed to why she's casted. Here I'm holding a screaming child and she has huge casts on her. So, it stressed me out. I'd prefer people just to ask me. Two individuals in Philly asked and it was much better. 

That visit to the grocery store just brought to light a lot of realities of how hard the minor day to day things will be in a month. She won't be able to sit in a cart at the store. She's hard to carry and multitask with the weight of casts today so can't imagine the upgrade. Can we even travel much for holidays? I started to really worry Sunday night as I ran through scenerios and didn't sleep much. Then the realty of flying this poor girl in a full body cast. It was just too much.

Monday I called our care coordinator and contacted a few people in the FB support groups who've been through it. That helped. I got three main messages/themes... It will be hard with some days almost impossible AND the anticipation of it is much worse then going through it AND she will remember none of it.

So, I calmed and just booked the tickets :). One step closer. She continues to amaze me each day with her resiliency. She's so happy the last few days and sleeping good. She even figured out how to climb the stairs. She tried hard a few times to stand today which frustrated her a bit. Each day we are a little closer to her standing. :). She's got this! We got this!

First Philly Trip

So we're almost wrapping up our first trip to Philadelphia.  We got in late Thursday evening after a plane delay. Flight went well but then everyone was tired so getting to the car and the hotel had most people in tears. 

Friday we went to our appt at 1130 and ended up being seen about 230. Sounds like that's kinda normal so we had lunch and played in the big play room.

Dylann pretty much hated every minute of the casting but that's been all the previous ones too. Dr Vanbosse used the hard casts instead of the soft ones were used to so she weighs like 10 pounds more now lol. After casts we just walked around downtown Philly for awhile and visited Reading market and LOVE park. Then we got caught in a rainstorm so headed home. 

Yesterday we drive out to see our friends the Prices and their new house. I'm partial to the one that was across the street from us but it was nice ;). We then went with them to Hershey chocolate world! It was a cute town and fun thing to do! Kids loved the ride that taught us how the make chocolate then grandma bought then a bear and some chocolate.

Today we went to Diggerland USA so Micah could drive a backhoe. He was pretty pumped. Now Micah and grandma are swimming at the hotel while dyl and I relax before another appt tomorrow.

Dylann's having a harder time with her casts then usual.  She hasn't slept more then 2-3 hours straight without waking up crying. She's pretty upset. Grandma has done a lot of the night duty so we could keep Micah asleep as much as possible. I'm sure our hotel neighbors haven't gotten much sleep either.   It's really hard to see your kid in pain and not be able to do anything about it... And there's not really an end in sight. She will be in 5 more casts until her surgery then her spica. I talked to the doctor a lot about the hip plans. He said his outcomes are much higher then what I was told in Minnesota .. Good news. He told me cause he's trying to correct her feet and knees a bit too she will need the full body spica instead of the 1.5 I was hoping for. She will look like the picture below for 12 weeks starting 11/18 but likely in more of a frog pose with bent knees... Bad news.

Sigh. After seeing her cry most of the last 3 days it makes you stop and think if it's really all worth it. I was thinking last night that we are 2 days into 124 days in casts.  I feel like we need to do what we can to give her the best chance at walking and getting her joints in the right position... But I hope that's the right decision. Maybe the pain trade off isn't worth it. I'm not sure if she will sleep fully normal again until February. She cried so hard today cause she couldn't go swimming with Micah. Just breaks your heart. 

Cast change tomorrow then maybe a little more sightseeing and home on Tuesday. Have a good week everyone!

October updates

Just starting to get packed for our first Philly trip! We leave Thursday after work. Micah and grandma are coming along to keep Dyl and I company. Dylann will be put back into her ponsetti casts Friday. Dr Vanbosse wants to redo her feet since they've regressed a little bit. Over the weekend we are going to visit our friends the Prices!! We are also going to Diggerland which Im told is a fun place where Micah can drive a backhoe and other construction equipment. Then Monday back to Shriners to get another cast on her feet and home Tuesday.

I've been feeling a little down the last few days and today I think I finally put my finger on it. I'm nervous. I know that starting Friday Dylann will be in casts for 4 straight months. I'm sad. After all this progress she's made starting Friday she won't be able to stand or practice her walking for a long time. I know it's all worth it but it is still hard to see your toddler restrained and frustrated and in pain. So.. That's what I know. Wish us luck!

My awesome cousins did help me recreate this awesome photo I saw that makes me think of Dylann!

Good evening!

Hi ya from the Paradeis household!

Just a few updates. We leave for Philly in two weeks so getting things ready for that. From that point on she will be in casts for 4 months straight so were getting our swims and play time in where we can!

I got good news last week that my FMLA was supported. Fourth time was the charm! I plan to be in the office two days a week and then working from home a little the other three days. I just met with an awesome gal from church who is hopefully going to help me 10-12 hours a week during those three days so I can have focused work time set aside!! Dylann loved her!

All in all a pretty good week!

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!