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!! 

Toddler Tales

I was talking with some other mom friends this week and we were saying how crazy it is that our kids are less than 2 and we are already forgetting things.  How little they were, their favorite foods at early eating stages, and just little quirks they had for a short period of time. At this rate, how will I remember anything when she's 18?! Th blog helps me record some of my favorite precious memories I want to hold onto. 

There's no sound I love waking up to more than Rilynn yelling, "Dad! Daddy! Daaaadddyyyy!!" Haha not it! 😉 But in all seriousness, I love seeing their little bond.

Favorites:

Minnie Mouse, Elmo, pears, wearing her silver sparkle shoes from Petra, making art at her easel with crayons or stickers, singing Frozen's Let it Go, dancing (specifically to Whip and Nae Nae), and babies (dolls are fun, but she prefers the real deal. My friend has a newborn who Rilynn calls "my baby") 

Least favorites:

Getting in her car seat, being told no, eggs (unless they are hard boiled), when baby Jason leaves. 

We love hearing her vocabulary grow. It seems like she's adding new words every day. When she wakes up in the morning she asks for a smoofie (smoothie) and awful (waffle). At bath time, her new thing is to say "off" meaning she wants us to turn the lights off and then she lays down in the tub and says nigh-nigh.  

Potty training: we bought Rilynn her potty hoping we could get her going before her cast so that it was easier for us and a good transition. She was doing great peeing on the potty, but regressed lately, and #2 is still a work in process. Let's just say I use a lot of disinfectant on our floors. I think we are heading in the right direction though. 😬 

She's a dirt lovin' gal! Mud pies coming up!

She loves "awfuls" and "smoofies"

Black Butte is the best for adventures!

Audrey and Rilynn could have their own TV show. They wrestle and giggle non stop!

Picking pedals off of flowers

Wild and crazy on a walk in the woods behind our neighborhood.

She has chores... She sweeps and puts away silverware. Still working on perfecting both chores but she likes feeling helpful. 

First time bowling! She was engaged for half the time.

Petting zoo at the farm with Grandma

Say "cheeeeese!"

We'll put this one in their wedding slideshow! 😉

Unfortunately

Unfortunately... I've grown to despise that word. It is the polite way of saying, brace yourself, I'm about to give you bad news. It is the way doctors have started every conversation with us about Rilynn's hips. "Unfortunately, both of your daughter's hips are fully dislocated.... Unfortunately, the harness didn't work.... Unfortunately, the MRI shows that after just 3 hours in cast 1, her hips already fell out again... Unfortunately, her right hip has shown no improvement so we need to postpone  the next surgery... Unfortunately, the surgery failed and she will be coming out of the cast with no progress... And the latest, unfortunately, we won't be able to do Rilynn's surgery until October. Disappointed again. We can't wait for the conversation that begins with fortunately. There is never a good time to spend months in a body cast, but we had been planning on the first week of September for a year. Luckily, I'm married to the greatest man alive who is way more rational than I am (I just cried) and he was able to convince them to move it to Octobet 7, rather than the end of October. We are very anxious for the next surgery, hoping we will learn how long recovery will be this round and if she will be having another surgery a few months  later. They won't know if they can do both of her hips at the same time until they are in there, which is why our surgery got pushed back, other children who had surgeries that ended up needing to be done in two or three separate procedure. We are just praying Rilynn's can all be done at once so that her cast time doesn't double. For now, we will continue enjoying chasing her around and catching her in trouble on top of the kitchen table or climbing on the bathroom counter, while we wait for our next hip journey to begin.  We are so blessed that, although Rilynn has this hip issue, it is just a hip issue, She is healthy and happy and full of personality. Thank you for the continued prayers, well wishes, and support. 

Rilynn 1.5

Happy half birthday to our sassy pants! Before having Rilynn we had parenting all figured out. She would be this polite kid and we wouldn't put up with tantrums. Toys would only be in her room and our backyard would have a designated kid area. Well, the polite kid is still a work in progress. She has mastered the tantrum. It could be over anything, not getting an M and M for trying to go pee pee on the potty (she only gets one if she actually goes), she doesn't like her dinner, I tell her we don't have any blueberries... We can be really mean parents. Our no toys outside of her room is a joke. Have you seen our living room? And our backyard looks a little trashy with all of the toys... But those pre parent dreams just seem ridiculous now. 

At 18 months...

Rilynn loves- shoes, Minnie Mouse, the Wheels on the bus, climbing, wagon rides, camping, dirt, "booberries", water, and babies

Rilynn does NOT love, having her diaper changed, being tired, chicken, sharing, 

Rilynn and her buddy Audrey!

I watch a little guy named Bennett twice a week. Him and Rilynn are pretty cute together.

Grandpa and Ri on the boat

Berry eating/picking

Our favorite splash pad is Robinwood park!

Swimming with her cousins at Black Butte.

Weee!

Audrey and Rilynn playing dress up

Rilynn loves baby Jason (Audrey's brother) and has been obsessed with babies for a month. She looks at her baby pictures at least 5 times a day.

Potty talk is a big deal at our house these days. I've made up raps about peeing in the potty. What has my life come to? 

Art is fun because you get to make a mess

Swimming with Aija at Portland Golf Club

Her and Benno love each other.

First camping trip... I spy Ri Ri

Just relaxing in her dirt pit.

Do you see what I mean about the white trash backyard... At least it's not the front yard!

First ice cream cone.

Pretending to be proper. 

Who's this big toddler and where did our baby go?

But sometimes she wishes she was still a baby. 

Latest on Rilynn's Hips

We've enjoyed our out of sight out of mind stage with Rilynn's hips, but we are getting closer to that next set of surgeries. Today I met with Dr. Roy at Shriner's. Travis wanted to come, but since he just started at his new job, I had to go alone. Dr. Roy is one of the 4 surgeons we have seen and probably the surgeon who will operate on Rilynn next. It was very informative, but hard to hear. I was pleased with myself for not completely breaking down in front of him, especially since in the back of my mind I was reminding myself that this isn't that bad, our child is alive, walking around, and has a bright future ahead of her. Many of the other parents I saw in the waiting room couldn't say all that about their children.  We got an updated X-ray that I have posted below. It showed that Rilynn's right femoral head has developed faster than her left and that she has almost no sockets on either side. Her hips are dislocated high meaning even if there were sockets to go into? It would be challenging to get them to stay in them with how high her dislocation is. So the plan... We will schedule her right hip for beginning of September. She will have an open reduction again, a femoral osteotomy to shorten the femoral head, and a pelvic osteotomy to deepen/create her socket in hopes that it gets the message that it needs to grow into a cup shape on its own. Best case scenario we do 6 weeks of the cast followed by some bracing before doing it all over on the left side with 6 weeks of casting followed by bracing. Worst case, each set of casting lasts 8 or more weeks. That was the first big pill to swallow. He said if it was possible to do both sides at the same time without disrupting the first side while working on the second he will do it, but it is a game time decision and not to get my hopes up. Last we discussed AVN, the loss of blood supply to the femur head due to the amount of time in 1 position, is over a 50% chance. This just means the possibility of more surgery in her future and possible side effects such as a limp. Second hard pill to swallow. We just got Rilynn walking independently and the look of pride on her face melts our hearts, so the thought of taking that away from her, even for a few months, is heartbreaking. But it has to be done and luckily not over the summer this time. 

Here is Rilynn's current X-ray 

Here is what they should look like

On the bright side, her feet will probably be casted this time too, so they will be still enough to do a pedicure! 

So those of you wondering when baby #2 is coming, out of fear this will happen again (now that we had 1 with hip dysplasia, the odds go up with siblings), I feel like saying never, but in reality we are not even thinking about another one until Rilynn is cast free and done with surgeries. 

We still have a few months cast free and plan to enjoy every second of it!