Continued Philly Fun

Dylann and I had a nice time this weekend. Saturday we found a festive in downtown Philly and went trick or treating. 

What a sweet Moana :)

Sunday we hung with our new friend Katee. We watched Moana in the theater and did lots of playing at the Ronald McDonald house.

Today was time to get our last foot cast! We got to be in the fancy cast room!

Cast removal was traumatic again but then got some time to enjoy my legs castless for a bit. Look at those straight feetsies! 😍

Went back to purple/pink casts.

Spent the evening playing with Katee and going to music therapy. Both our besties are gone now so Dylann and I are on our own tomorrow. 

Id be lying if I said I'm not insanely nervous about Wednesday. She's been asking lots of questions about it and I'm sad to have her be in such pain again. Keep her in your thoughts and prayers. She'll be in surgery probably from 7:30am to 2 or 3pm. Thanks so much to folks who have sent her things. We know she's very loved. 😍 Sweetest little one.

Start off to 10th Trip to Philadelphia

It's safe to say at this point that Dylann and I are really good at travelling to Philadelphia. Most of what I had wanted done prior to getting prepared was done, so that always helps. The only main hiccup was getting her rental reclining wheelchair. They told me the week before we left that I wouldn't get it on time after a number of mishaps on their end. I decided to try to find another way and borrowed some options from neighbors of mine. They ended up calling me a few days before I left and said they were going to deliver it that day or the next day and were going to call me back with the time. A few hours later my neighbor was calling me as she attempted to go sign for it and they wouldn't let her and they hadn't called me back with the time so I was still in at work a half hour away. I raced home to find out that somehow our DME company had ordered us an entire medical set up - bed that could raise her feet and/or head, a lift to get her out of bed as well as up and down stairs, a bathroom set up and the wrong size wheelchair. So that all got sent back and was a giant waste of my time. They aren't the most organized place I have worked with.

Anyways, we were able to use what we had for now and can make adjustments later if needed. My aunt and uncle brought us to the airport Thursday. We had a pretty easy flight and Dylann did great. 

 The car rental went flawless and we decided, for the first time, to use Thrifty and the Shriners contact to help coordinate it. I ended up getting $100 off, an upgrade to an SUV for free, and a free car seat for the time. We got in the Ronald McDonald House which is always such a blessing for the amount of stress being there is alleviated. Dylann as usual was spoiled when we got here last night with toys and volunteers playing with her!

Casting went fairly well. She now is very upset with the saw sound so that's a pretty rough 15 minutes for her to get them off. Her new doll kept her happy and she picked new colors!  Sounds like her surgery will be about 6-7 hours next Wednesday.

After casting we ran lots of errands to bank, post office, and grocery store. When we got back to the Ronald McDonald house house just a bit ago we met a new friend who sees our MD. He was in the cast that Dylanns going to be in next week so we went over to chat. He actually had surgery two days ago and is already discharged so that initially made me feel relieved. Well the more I talked to Mom it sounds like it's been kind of horrible. He's still in a ton of pain and begging to go get the cast off 😩. So now I'm nervous again. They are from Singapore and staying here for the month he's in it.  Poor kiddo did not look happy. 

So now Dyl is resting then wants to play with her buddy who we found out is coming today. We plan to do some Halloween events this weekend and relax. Weather is beautiful at 70 and sunny!

Also, lots of people have been asking where they can send Dyl a card so I'll just post our address on here as well. Our plan right now is to head back Monday 11/6.

Phila Ronald McDonald house

ATTN Dylann paradeis 

100 East Erie Street    Room 204

Philadelphia, PA 19134

Halfway through Casts

Tuesday marked the 4th cast meaning we're halfway done with serial casting! Dylann and I went down to Shriners to change her casts. She was less happy then in Philly. Mostly she hates the saw so once ther child life specialist got her distracted, it went ok. She stuck with the puppy paws for one more week. The MD said her one foot was making good progress, the other one medium... that's what I was expecting.

Most of the upcoming trip is planned. We leave in two weeks from today and are there about two weeks. Dyl and I are going first then Jeremy will join us 10/31. Her surgery is 7:30am on wed 11/1. I anticipate she'll be in there for 6-8 hours so that day is going to be horrible. Hopefully only 2-3 nights in the hospital after. The only main thing left to get done is her wheelchair here that we need to rent... the DME provider is being difficult. I'm hoping to have it so I can just fly that one with me instead of the having two chairs to bring back. Not sure the timing is going to work at this point.   Oh and Dylann and I need a ride to the airport 10/26 getting there at 11 if anyone can do that! Otherwise we're ready as we are going to be.

I did get the call this week that her cast removal will be 12/15 at 8:30am!!! So 6 weeks in cast is set and she hopefully can enjoy Christmas cast and pain free! I was worried 😩 the holidays would add weeks on.

She continues to rock all this... the rest of us probably get C+s 😳.

A week in..

.to our 3-4 month journey. Overall things have gone well since we got home Tuesday. Wednesday morning we had an IEP meeting and then she was able to join her friends back at preschool!

Thursday daddy took her down to get her casts changed. Sounds like this was not a good experience for anyone. She's terrified now of the saw to remove the casts. The Mpls Shriners MD had to take a break to let her calm as nothing was helping. They ended up having the social worker come and play with her to keep her distracted. This ended up working and once the casts came off she was her normal perky self. I love the colors she picked... blue puppy paws. Her feet are looking good after 3 casts.

Today she went and saw her favorite Angel for her CST appointment. This always makes her in a better space and can't believe we've been seeming Angel since Dyl was 5 days old! We drive to Lindstrom now to keep things going!

Dylann is sleeping better and complaining of her knee less. Her temperament is so amazing! She spent some time today taking selfies with her grandma and grandpa.

 

Finalized next trip plans so things are falling into place. Delta continues to provide top notch customer service for our needs. Got discounted fares with medical waivers to change anything we need last minute. Plus we now get the TMA Care program that individually helps those with disabilities get through check points so no more stress around that. Got a car booked then got connected with a manager who is giving us a Shriners discount and lots of free upgrades and perks. Finalized with a DME company today for her rental reclining wheelchair that will be here in time to bring with us there. So, today, felt like things were coming together. The last three days have felt like 30 though so this momma plans to sleep 😴 til noon tomorrow...