Delaware, Part 2: December

  Apologies for those hoping to read my blog in chronological order. We drove to Delaware for the second time two weeks before Christmas, which was the previous post's festive topic. This will be a longer post and *WARNING* there are a few pictures that some people might find a bit gross or graphic (and a little bit sad) when it comes to Emma getting her hip spica cast off, because she had pins in her bones/ sticking out of her legs and I am posting that. This is mainly a medical and informative blog after all. Also, if you have not yet read the post about her getting the corrective leg surgery in October, I highly suggest it: PART I here. 

  After seven weeks in her hip spica cast, we drive back up to Delaware with Emma on Saturday, December 11th. It took us two days to drive there and her appointment was Monday morning, so we knew he had to be in town Sunday night. We stayed in a Home2 hotel in North Carolina the first night. I liked that hotel a lot- definitely my second choice after Residence Inn! (I wish we could be living in a Home2 right now. Read this post to see what I'm talking about.)

  We rode with Emma's regular car seat in the front seat, since we would need it on the way home, but she continued to use the crazy huge Wallenberg chair which we were still borrowing from Nemours hospital while she was in her hip spica cast and could not safely fit into anything else. The chair took up so much space that the front passenger seat had to be set all the way forward. Sasha stayed at the pet boarding facility like last time, this time with her scar from last trip's attack almost fully healed. And they let us upgrade her to a private dog suite for free. Delaware greeted us with brisk winter weather, which was much appreciated, as Florida had not yet received the message that it was almost Christmas. I had been working on some decorations to tape to the window. (I later learned that very cold windows and tape don't mix and spent a lot of time on our last night trying to get the sticky off with warm washcloths!)

  On Monday morning, December 13th, it said in our schedule that we were meeting with Dr. Mackenzie at 10am, but once we arrived they told us that Emma was getting the cast off first. Michael did the best he could to comfort her as the dremel cut through the surprisingly thin cast layer. It was a lot of cotton that makes it look so thick. They cut through that with medical scissors. *HERE IS YOUR WARNING* now. Once you start scrolling down from here, you get to the two "pins in the legs" photos. I don't think it's gross since it's not bloody, but I don't know how many of my devoted readers are squeamish. There is one pin photo in this part:

  The assistant (wearing the black scrubs) was surprised that I wanted a picture of the pin in her leg. "Most people don't even want to look at them." I told her that I have been interested in seeing them for the past seven weeks, and also threw in the bit information about how I write a blog about Emma and her "medical adventures". I often think that I should make new business cards and carry them around for opportunities to share her story like that, but then I forget to make the cards. I often complain that I only have a handful of readers- my friends and family. I want Emma's story to be huge! She has gone through so much in less than five years (so far- you know she has a lot more challenges ahead!) and her medical history and her genetics are so rare.

*SECOND LEG PIN photo below*

  This leg pin is harder to see because it sadly got really lodged into the bone over the weeks. Michael and I both had to hold her down and tell her sweet things for that one- no pictures taken there! "I know it hurts. You're so brave. You're such a big girl. They're almost done, I promise." Colleen, who is Dr. Mackenzie's assistant, held Emma's leg down, while Nick, a resident (?) attempted to pull the pin out with medical pliers. He was having a difficult time, so Dr. Mackenzie pulled on Nick's arm until the pin came out. Luckily the pin in the first picture came out super easily and she didn't cry with that one.

  Band-aids over the pin holes. I was surprised how great her surgery scars looked when the tape was removed, then remembered that they had been healing for seven weeks. Although the scar was longer than I expected, but whatever. It needed to be done, and look how great and properly bent those legs are (but still without knee caps). Off to get more Xrays!

  Emma did so well during her physical therapy evaluation at the hospital, just three hours after getting her cast cut off! This therapist, Karen, said she was surprised with how much mobility Emma already had in her legs, hips, and torso. She told us that we didn't even have to come back for therapy the next morning to see her. We did have a therapy appointment at 2pm, but I told her that was perfect because I was really wanting us to go to Longwood Gardens and Karen highly recommended it, so that's what we ended up doing the following morning (Tuesday). I'll probably make a separate post about that at some point in the future. It was a really pretty place- especially inside the atrium!

 Back at the hotel, I was surprised to see Emma continue with her own therapy and show off some big stretches since she wasn't able to bend forward, backwards or from side to side in the hip spice cast because it came halfway up her body. Also, I didn't get any pictures of the girls from Lawall (prosthetics and orthotics company within the hospital) who made these little splints that went behind her legs, to hold them at a bent angle, but that happened before we left for the day.

  Emma's like, "Oohh yeahh, that's the stuff!" Next came the bath to wash her legs very carefully. We picked up the recommended Cetaphil wash and put clean band-aids over the pin holes. If you didn't notice in some of the previous photos, Emma's legs were extremely dry from the casts. She was constantly itching them that when we picked her up later, it looked like someone had dropped a packet of Parmesan cheese where she had been laying. Hahaha! Now that is gross. Olive Garden, anyone? So it was good to wash that off and put a bit of lotion on her skin as well, but not over the scars.

   Emma went to sleep with her legs taped to the pillow, but by 4am she had kicked the pillow and tape off. She does roll from side to side a lot when she is sleeping. And especially that she was finally able to roll around again and not stuck on her back, it's a surprise the tape even lasted a whole five hours! Next are pictures from therapy on Tuesday afternoon after we enjoyed our morning at Longwood Gardens:

  Sitting in a big girl chair "the real way" for the first time! If you have suddenly forgotten how her Genu Recurvatum (backward bending) legs looked the first four years of her life, including how she used to "stand up" on the bottom of her femur bones, you can see a bunch of cute refresher photos in THIS post.

  One of the walls at the front of the hospital had a bunch of doctors holding their favorite children's books, so I took pictures of Dr. William McKenzie (second photo) and his son Dr. Stuart Mackenzie who both worked on Emma's leg surgery in October, since I didn't normally get to see their faces without masks on. 

Below, it was so sweet to see how delicately Michael got Emma in and out of the car each time for a couple weeks after getting her cast off. The third picture is funny because she is clenching his shirt. "Don't drop me, man!"

  It was so funny to hear the way the therapists talked about Emma's tiny knee splints. These are not direct quotes at all, but basically the consensus was, "What the heck were they thinking? These are garbage. They are way too small. They need to support her whole leg for them to work. Is this what Dr. Mackenzie wanted? I'm texting Colleen right now." I was literally laughing. Michael and I definitely thought they should be bigger too, so on Tuesday, Colleen had been consulted and we were instructed to go back to Lawall at 2pm on Wednesday, where Emma had new splints made that supported more of her leg. I was so glad that the Lawall appointment wasn't in the morning because we had plans to meet our super good friends (Ryan and her husband Ben, from college/ my roommate and bridesmaid) at the Zoo. You can see them in a few pictures from a couple posts ago.

  Super sweet and patient Meghan at Lawall, and a sleepy Emma. These splints were perfect and are the ones she is still wearing today. She will continue to wear them 24 hours a day (except for diaper changes, baths, and self-appointed "leggie breaks") at least until the beginning of May when we meet with Dr. Mackenize and Colleen in Orlando. Luckily for us, and many other families who live in the Sunshine State, he makes a visit to the Nemours in Orlando once a year. That is where we first met him, and that is where we will have our followup visit with him. However, I am sure he will want her to keep wearing them since she can hyper-extend her knees when she isn't wearing them, and we're trying to avoid that.

  Returning The Beast of a car seat to it's rightful owner. Hurray! And with much practice over the past few months, Emma has now become a master at getting her splints fully off both legs.. and promptly throwing them across the room.

   More on-her-own Thursday morning therapy stretches, before 11am therapy at the hospital. Good girl!! That was her first time pushing herself up like this since getting the cast off. She did it a few times. Our schedule changed a lot during the week. Before we arrived, Emma was scheduled for two or three therapy appointments each day, since each therapist could help her with different things. But since she was progressing so well, the therapists would cancel or move appointments around as they found necessary. This was nice and gave us more downtime to do fun things around town, take naps, and ensured that Emma wouldn't get crabby from having to work too hard. I also ran to Target a few times near the hotel to buy Emma a bunch of colorful leggings, which fit perfectly under her new splints.

 We couldn't leave Delaware without a photo with Dr. Mackenzie -- or Santa!!!

   If you already saw the Christmas blog right before this one, you maaay have noticed that Santa got Emma the therapy toy in the photo above. The happy blue monster with a little round ghost in his hand. His name is Rocket. I was so surprised when that showed up so quickly at our apartment! Reminder- this therapy day was on Friday, December 17th, and the following Friday was Christmas Eve!

  Time to head home- Saturday and Sunday:

  We stopped in South Carolina on the way back because Michael discovered that was more of the halfway point. In October, there was too much driving the second day home. Emma doing her morning stretches because she knows she's in for another eight + hour day in the car. Such a trooper!

  Happy to be back home in Florida, all fresh after a bath, sleeping in her own crib, and already figured out how to kick off a leg splint in the middle of the night! Until the next adventure.