Monday, March 16, 2015

Update on Siena's foot at Shriner's Hospital

The last time we had an appointment with Siena's foot doctor at Primary Children's, we were told that amputation was still on the table and may even be a good option. Since then (about 2 weeks ago), we've been doing tons of research and pondering on what to do. We found some great resources on line and talked to a family here in Utah who has a double amputee child in the family. We had started feeling that an amputation might be the best course of action. We heard about Shriner's hospital which is a non-profit hospital that runs on donations and we found out that 100% of our health care costs related to Siena's foot would be covered by them. And it doesn't hurt that they are experts at the conditions that Siena has. We've been anxious / excited for today so we could meet another doctor and explain our situation and thoughts about the whole thing. We were also excited to find out another perspective about Siena's foot/leg. Below are some new things we found out at this appointment:
  • She currently has about a 3cm difference in her leg (just over 1 inch). Based on some calculations using the x-rays we got from Primary Children's, that difference will grow to approx. 6-7 cm (about 2.5 inches). This is pretty mild relatively speaking and would most likely only require one leg lengthening if we did it when she stops growing (around 12-14 years old).
  • Her femur is about 1/2 inch shorter so they would most likely do a minor surgery to attach a "clamp" on the growth plates to slow the growth on her "good" foot at some point by 1/2 inch to correct that problem and ensure that her knees were at the same level.
  • Her Tibia and Fibula are short as well but both bones are at least present which is a plus. Due to the shortness in her bones, she has fairly bad knock knee which is where the knee bends inwards and that will need to be corrected as it gets worse. It's a fairly simple surgery where a plate/screws straightens her knee out as it grows.
  • She does not have an ACL. Apparently that is very common for fibular hemimelia patients. It shouldn't hinder her functionality though. The body should learn to work without it from what we understand.
  • Due to her foot/ankle structure,  she will have a ball and socket ankle which could make her more prone to ankle sprains later in life.
  • Now that her casts are off and her Achilles tendon is stretched back out, they prescribed a Ponseti brace (see pic below) to wear every night for the foreseeable future. This will keep her foot stretched in the right direction and help her foot and ankle grow correctly. I'm fairly excited that they gave us these types of shoes because the dobbs brace that we had when she was little was nice for movement's sake, but these look like they will be more comfortable and she will have WAY less blisters with these.

  • They gave us some orthotics to use in her shoes which will help correct some of the length discrepancies and allow us to use the same size shoe since her orthotic will lift her foot in the shoe and make it fit more snugly.
  • The Dr. feels like Siena is a great candidate for a limb lengthening due to the mild nature of her case. She has a good foot and ankle (as far as she can tell right now) and the length difference isn't too drastic. She doesn't think it would require too many surgeries over her lifetime to correct this. And she believes her foot and leg should have good functionality when all is said and done.
At this point, we need to keep doing some more research to make sure we don't want to go the route of amputation. If you do a fair amount of research like we have you will find that amputation vs going the limb lengthening route is a pretty big gray area. It's hard to say which will have a better quality of life. We will continue to have appointments every 6 months to re-evaluate and do x-rays, and get new braces for her ponseti brace, etc. We are glad to have some additional information but we still feel fairly conflicted on what's the best path forward. That's about everything we can remember from the meeting with the Doctor. Until next time...:) Below are some pics too!

Siena playing with the chipmunks before her appt:

 Siena getting the cast removed. She did great!

Siena walking around in one of the Ponseti braces. She thinks they are cool shoes...

Sunday, March 15, 2015

Middle-end of February 2015. Club Foot/Fibular Hemimelia Appointment

I love sleeping baby pictures. Here is a cute one of Declan all burrito-ed up!
I curled Siena's hair with a curling iron for the first time a few weeks ago for church. She loved getting her hair done! Turned out pretty darn cute too if I do say so myself.
Joel got a new phone and it had capability of doing slow-mo videos. When testing it out we got an epic video of Siena. She kept saying that it was burping and mooing when we watched it back too. So funny

We went to a trampoline play place with the kids a few weeks ago. The kids loved it! Even Brighton held his own against the big kids.
Can you see this next one?!:) I laid Declan down on Siena's bed and asked Siena just to keep an eye on him while I laid Brighton down for his nap in the room next door. I came back to this sweet sight. Siena had tucked him in the blankets, given him a stuffed animal to hold and was reading him a book. Cutest big sister award!:)
Such a sweet little guy!

 This video is just a slow-build of Declan about to cry. I thought it was too cute though and had to post it.

 Everyone loves Declan!:)
 I love when they play well together. It's so sweet!
Siena loves listening to her books on CD that we get from the library. I also love it because I am able to get a few things done.
Declan cooing.
 Knock knock..
 Bippidi Boppidi Boo:)
 Siena had a club foot/ fibular Hemimelia appointment. She has these about every 6 months, so I was looking forward to seeing if they had anything new to say. Brighton was a fan of the toys they had in the waiting room.
I took this picture and sent it to Joel telling him about how they had put us in a room set up for doing the castings for club foot that we had done with Siena when she was a baby and how it was bringing back such "fun" and then about 2 minutes into the appointment the dr said Siena needed a cast. Talk about some negative foreshadowing!lol Siena's right leg is shorter than her right and she had apparently been walking on her tippy toes on her right leg and that had tightened her Achilles on that leg and it needed some stretching out. They stretched her leg and then put a cast on it for a week to stretch it out. They wanted Siena to come back for new casts once a week until it was better so we made 2 more appointments for the next two weeks just in case. More on that later in the post.
 She did great getting her cast on. The Dr was really impressed and said she does better than even the
 She's was quite a fan of her pink cast
Brighton LOVES "Deck-uh" (Declan). If Declan is awake and I'm not feeding him Brighton is usually right near him. It's adorable!
 Snapped this sweet picture of Brighton's chubby cheeks! Love them!!
 He just recently found his belly button and thinks it's the coolest thing ever!
 Brighton says quite a few words now. One is "here you go" which sounds more like Hee-a-go. It's so cute.

 About 2 days after getting her cast on she was complaining that it was hurting a ton and wouldn't walk on it.
 Sweet tuckered-out baby!
 After a day or 2 of her complaining and occasionally bursting into tears we went back in to the office to have them take off the cast and check to make sure there were no blisters or problems with it. After determinng that it was fine and that it was probably just her Achilles stretching that was hurting they put on another cast and we made another appointment for a week from that day to get that one off and the next one on.Siena was pretty excited that she got to get a new color. She chose red for her 2nd cast. More to come on that in the next post.
I posted a shorter version of this video on Instagram and said this: "Oh my goodness I am dying over this video! I think I have a little OCD boy on my wish I could have posted the whole video.. He was pretty upset over that darn trash can lid that would not stay closed!"

This is how we make it through church my friends.. two fistfuls of
Siena has been learning songs in Primary and it is so fun to hear her singing these songs at home. The most recent one is called Gethsemane.

Brighton was so upset that morning that he couldn't figure out how to use his spoon. Overall he did well with it though.
 Siena loves having Brighton walk to her. I'm still working on teaching her that you have to stand a few steps away for him to actually be able to walk to her.:)

 Hanging out with his bro.
I love Brighton's car sounds:)

Brighton's first time-out. It was too cute to not take a picture! He sat there really well too. I guess he's seen his sister do it a time or two or
Shortly after Brighton went to time-out Siena had a meltdown and had to go to her room until she calmed down. I took a video in which you can hear Siena screaming from her room and can watch Brighton's reaction to her freakout. It was pretty epic..
I was also lucky enough to have my friend, Amanda, from college come to visit with her sweet little girl. Her daughter was such a fan of Declan, it was hilarious!

Saturday, March 14, 2015

End of January thru the middle of February-ish 2015

Most morning Siena and I sit for about an hour or two to read LOTS of library books. She absolutely loves it. Brighton, not so much. He's not too into books yet so he usually plays while we read.
 We went to visit daddy at work and Brighton was a big fan of the big windows.
 We love visiting Daddy's work!

 I gave Brighton a haircut and Siena asked if she chould have one too. It had been taking me 10 full minutes to brush her hair out every morning, so when she asked I said YES!
 Her short little curls

 Brighton is learning to use utensils like a champ
 I posted this lovely picture on Instagram and wrote this about it: "Some moments in motherhood just ain't so glorious.. Just finished cleaning up poop in the bathtub (thanks Brighton), then came down to find this fun mess. On a positive note, my bathtub and the bath toys both got a good cleaning, Declan got a bath, and all his sheets got a good washing. Rough morning, but good thing these kids are worth it!:) p.s. Sorry the pics it just made my point so well."
 The kids love playing in our backyard! The weather this winter has been fabulous and we have had lots of days when it was warm enough to go out and play
 We love this little chunk
 Siena treats Declan like her little doll a lot. She loves to get him "blankets" and pretend to be his little mommy-helper.:)

 Doing her hair in pigtails for the first time after chopping it all off.

The kids and I stopped by the LDS Draper temple one morning after running some errands near it. Siena LOVED it

 Just some fun pictures of this little cutie! I love this first one, it looks like he's really pondering something..:)

 Declan and I get some occasional mommy-son hangouts when both Brighton and Siena decide to take nice long naps.
 This is also an instagram post: "Siena is desperately trying to explain to me that the nail polish isn't working. I'm pretty positive it's"
 Declan one day was trying to suck on his tongue and kept pulling his upper lip in. So glad I caught this moment in a picture, it was too funny!
 Siena and I made some gak one day for fun and she LOVED IT!
 Her poor Elsa doll got "toy story-sid-afied!"
 We have smoothies every morning for breakfast and I just love Brighton's sippy lips!:)
 Hanging out at the park.. Brighton crosses his first and middle finger all the time and it's the cutest thing!

Declan also turned one month during this time-frame. Such a cutie!
 And 2 months!:)