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!