Happy Halloween

Happy Halloween! We spent the night inside with friends.  The weather didn't look inviting for trick or treating. Last year I had big dreams of making our family the Flinstones for Halloween... Well my sewing skills were not up to par, so we ended up with a cheetah print belly shirt for Ri and a big nest of thread. This year I was determined to make a no sew family costume. We went with Monsters Inc so that Rilynn's costume matched her purple cast. 

Had a blast at her bestie, Audrey's, second birthday party!! 

This little duck, Ava, belongs to my childhood friend Leah! So fun to see our girls play together since we were on play dates together at that age.

Cutest little astronaut and birthday girl!

Our first Halloween event was trick or treating at a retirement home with a moms group.

Rilynn, of course, went as Boo! I cut the sleeves off of last year's winter coat, spray painted it purple, hot glued a dollar tree mop to the top, added some pingpong balls for eyes, and white felt for the teeth. 

I spent way too long coming up with how to make Travis's Sulley costume and ended up using an entire thing of teal yarn cut into 6ish inches and spray glued it to a real t-shirt. I used a crochet hook to poke holes in the neck and tie pieces around the colar.  

Goodwill provided our hard hats and I spray painted them blue, printed off the Monsters Inc symbol, and hot glued it on. 

My costume was super easy. Green T-shirt, black, white, and green felt, plus some hot glue. Took about 10 minutes.

2 Weeks Down ? to Go

It has been about 2 weeks since surgery and things are getting easier... not easy, but easier.  She's sleeping much better, less frustrated and grumpy, and we've been able to get out and about a little more thank goodness because staying home all the time drives us all crazy.  Last week, we had to go to Shriners to have her cast adjusted.  This cast is different from her previous casts, which had a gore tex lining making it easier to keep her clean and dry; this cast doesn't have that and by day 4 she was SOAKED in urine causing a terrible smell, skin break down, sores, and her cast was breaking down.  The cast tech made her diapering hole bigger, cut off the broken cast pieces, tore out a bunch of stuffing, added a cloth liner to stop the stuffing from sticking to her skin, and added more fiberglass making her even heavier.  The smell is better, the sores are improving, but the cast is continuing to break down around the diapering hole, so we may need to make some more adjustments. You'd think we'd have the whole cast care thing down by now, we were even told by her previous surgeons that she had the cleanest casts they'd ever seen, but we are failing at it this time.

   Many people have asked when we will get an update, but as far as we know, her next imaging won't be until she's back in the operating room for her left side which should be around December 2. At that point, they go in with a "plan" and do what they can do and then decide on how long the next cast will be on ranging from 6-8 weeks again.  After that cast we get the Rhino cruiser hip brace for some amount of time 23/7 and then for some amount of time just at nights.  

People ask how we are a lot.  Some days are better than others.  We are so thankful for our friends and family who have been SO helpful and understanding.  Our amazing friend and neighbor set up a meal train for us, so we've eaten lots of delicious food.  Rilynn has received so many wonderful gifts, balloons, and cards that brighten up her day.  If you send us something from Amazon, please let us know so we can thank you! 

One of the hardest things to do is keep her entertained.  She watches WAY too much TV, we do a lot of art, but what toddler wants to sit all day?  She wants to get up and run around.  She continues to push on her cast and say, "Mama off", which breaks my heart because I can't wait for the stupid thing to be off for good either.  I've taken her to the zoo, we go on walks and little outings, but there are only so many things she can actually do and watching other kids run around only makes her more frustrated.  

Luckily, she's pretty verbal and can tell me what she wants and doesn't want for the most part.  She's learned to count to 7 (3 and 4 are sometimes missing). Rilynn is starting to get around by army crawling and rolling.  She's learning to pull herself up on furniture, but Dr. Roy said that's a no no putting too much pressure on her leg that could cause her femoral head to slide out of that perfect position.  

 She's started to become resourceful and uses the cast as a fanny-pack.  Over the weekend, she ate some pretzels while watching a movie.  Later that day, or maybe the next, Travis was noticing that her cast was feeling much looser than it had in the beginning and he could stick his finger pretty far up her left leg.  That's when he felt something sharp and pulled out a pretzel.  We've also found small toys and crayons in there.  

Our little minion has been to a pumpkin patch 3 times already this season. 

Nothing like a little baby Jason snuggle time to cheer a girl up.

Best friends make everything better.  We see Audrey at least 3 times a week and if we haven't seen her in a few days (or even hours) Rilynn yells, Audrey! Where Audrey?

Cast or no cast, she's still our little sour patch kid.  Have you seen the commercials?  "First they're sour, then they're sweet." That sums up Rilynn.  She'll have a huge tantrum or throw something at us.  And a minute later she gives us hugs and kisses.

Update from Shriners

We survived the first night. Rilynn slept pretty well despite all of the nurses and doctors coming in and out of our room. She started off Thursday pretty well, but a fever slowly crept up and put her in a grumpier mood. Her diet was restricted starting late Thursday night since she was being sedated for her MRI. She had a terrible night of sleep Thursday. Having her epidural removed Friday morning was probably the worst thing We've ever witnessed. Although the epidural itself wasn't painful to remove there was a lot of tape and tape that went under the cast making it hard to remove. After waking up from her MRI she was in a lot of pain and we had to get that back under control. Her MRI showed that her femoral head is in the correct place, there's just not much there to hold it in place so we have to be VERY careful with her. Her cast is extremely tight; much tighter than previous casts. And the diapering hole will make things interesting because it is tiny!! No pictures from today. She doesn't look like herself and we don't really want to remember her looking like this. But here are some from Thursday. 

She's got all of the essentials... Elmo stickers in her bracelet, binki, Minnie Mouse, Baby, and a braid to keep the hair out of her face. 

At least her toes are pretty!

View from our room

Took a while to get her to leave the IV alone. 

Right Hip Femoral Osteotomy

The gray area of medicine has come in many shades for Rilynn's hips. Plans change constantly and we are learning not to expect anything. The plan for today was to check in at 9, for a 9:30 surgery start. We checked in at 9 and said good-bye to our loopy drugged out girl at noon. The previous case was more complicated than expected. We were very understanding because we've been those parents. Keeping Rilynnn distracted, since she hadn't eaten since our night of fun at 6 the night before, was our priority. She watched a lot of Frozen! We were planning on both hips femoral and pelvic osteotomies. At 1 we got word that the incision had been made. At 1:45, Rilynn was "doing fine". 3, still fine. Then at 4 we heard they were still on the right side. We knew that probably meant things weren't going as planned. At 4:30, we learned he was not attempting the left side. At 5:30, our doctor, who is amazingly knowledgable and experienced in deformed hips, came out to give us the low down of what went down in the OR. We started with the right side because that's the side that was previously operated on and he knew the scar tissue would be challenging. Once in there, he did a femoral osteotomy, breaking her femor, shortening it an inch (which he seemed to think was a lot), and putting in a plate. Then, he tried to think of how he could do a pelvic osteotomy to build more of a cup shape, but since her "socket" is shaped like a plate instead of a cup, he couldn't do anything. So, he positioned the femoral head in the plate, tightened her ligaments around it, and put in the purple cast. She will have 3D imaging to verify the position later this week. Then, she will be in the cast for 8 weeks. At that time we will do this again on the left side. It will be easier to get to since that side does not have scar tissue, but he anticipates it will look the same. We are hoping that with her femoral head in the right place, her socket will form into a cup and that's that. The first 6-12 months is the most crucial in growth. After that, we can see if she needs the pelvic osteotomy done. Her socket will have grown enough that, hopefully, there is something to work with if needed to create a socket. 

We are disappointed that this will be a long recovery and that she's not out of the dark yet, but we are so grateful that we found a surgeon as experienced as he is. He has done HUNDREDS of the surgery he doesn't normally do and has been working on hips for over 35 years. AND you can actually have a conversation with him and understand what he's saying. 

We are happy about the purple cast. It's been something we've asked for 4 times and the other hospital was always out of purple. Maybe it will have magical powers to help that socket grow properly. 

1 free leg! 

Watching a movie

Can't wait for the day we can squeeze her thighs again and have her run into our arms!!