Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Saturday, February 21, 2015

Ankles, Knees and Guided Growth Systems

Audrey is one very flexible girl. People like to use the term "double jointed" but there really is no such thing as being double jointed. A person can have loose ligaments and tendons, or ligaments that subluxate (slip out of place), but no double joints.

Audrey…oh this child…she can bend and twist in all kinds of interesting ways. One of the symptoms of Down syndrome is low muscle tone, which allows a child to be hyper-flexible. But Audrey is different. She bends many parts of her body backwards, and we can often hear her dislocating various joints. Like her ankles. And her knees. And her hips. And her shoulders. And her wrists.

Yes, dear friends, Audrey is able to completely dislocate all of those joints. I mean, pop her shoulders right out of socket, bend her ankles in ways they should not go, bend her knees backward toward her body.

The first time I saw this was on the plane coming home from Serbia. The flight attendant came walking down the isle, passing us with a horrified look on her face. I turned to see Audrey, knees bent backward toward her head, ankles dislocated, the bottoms of her feet against her face. I have never been able to catch a picture of this, but I can assure you it makes me queasy to look at! She has never expressed pain from any of this, and I suspect when she sat in a crib for years with nothing to do playing with her joints was a form of entertainment and sensory input. Now that Audrey has started running the instability of her knees has become more apparent and needed to be checked out.

Abel, too has one knee that is quite loose and appears to be what prevents him from walking down stairs with any kind of efficiency as well as preventing him from running.

We first met with a doctor who specializes in hips. He did a series of X-rays and thankfully both kids' hips are ok. But their knees? Yeah, he confirmed there is a big problem there. By the end of the visit we knew both kids need surgery on their knees. He sent us on to another doctor who does only knees and ankles.

Oh my, this is far more complicated than we ever expected! Yeah, we can fix the loose ligaments and tendons in their knees but there is no point in doing so until we first fix their ankles AND a different problem in the knee.

In both kids, their knees and ankles are misaligned. This is most likely due to lack of age appropriate motor activity during their institutional years. As the doctor showed me the X-rays and explained where the problems were (which were quite evident!) Axel's ankles came to mind. I think he will be paying a visit to this doctor as well!

April 7th Abel and Audrey will be having the 8 plate Guided Growth System placed in their legs. A series of plates and screws will be placed in their growth plates at both the knees and ankles. These plates will stop the growth of one side of the joint while the other catches up, putting their joints back in line to prevent long-term damage to all the joints in their legs including feet, ankles, knees and hips. While the surgery itself is a bit complicated, the recovery is quite easy. They will be up and running around within a couple of days without any restrictions!

After the surgery, every 4-8 weeks the kids will have X-rays done to watch the progress. When growth has reached the designated point, the plates will be removed. At that point they will have another surgery on their knees to tighten the ligaments and repair the soft tissue damage that has been done over their years of chronic subluxation. That particular surgery - which will likely happen sometime around September - will require 4-6 weeks of being casted from ankle to hip in both legs…for both kids. The good thing is Abel will probably grow much faster than Audrey so we won't have to do their casting at the same time.

As for Audrey's ankles, dislocating ankles are quite difficult to fix and don't have a very good success rate. Instead she will get a more substantial AFO to give her more stability.

So, that is four surgeries for kids (not even counting if Axel needs this done before his growth plates fuse!) and 3-4 surgeries for me all within the next 6 months or so. Oh yes, 2015 is going to be one very interesting year. 

Friday, February 20, 2015

What should I do?

I'm making changes in my life. Some are evident to those around me while other changes are more personal, to be kept to myself as I strive to be a better person, mother and wife.

But I also want to try new things. LOTS of new things! I think I'd like to try something new each month and post about it here. What are some things that you have always wanted to try but would rather watch me do instead? Disclaimer: jumping out of airplanes and going underwater is not allowed. ;-)

Monday, February 16, 2015

Before and after

A friend of mine is getting ready to start the process to bring another child home. She asked me for before/after pics of my kids. It is amazing the changes that happen to these kids in just a short time home. I wish the emotional healing happened as quickly. Sadly, it takes years to heal the deep wounds caused by trauma and lack of care in the institutions. One must also consider the trauma of being ripped from all they know, moved to the other side of the world and forced to learn a new language and culture outside institutional walls.

Tuesday, February 10, 2015

We thought we were done!

We thought we were done adding to our family, but there was one more member we didn't know about.

Meet Kat the Cat.
She is a rescue, approximately 3-4 months old. Just a sweetheart!

This is her most favorite resting place; right on my chest where she purrs and keeps me warm. It does make typing on the computer a bit interesting, especially when she's in a mood to chase the curser around the screen. 

Kat and the dogs get along very well. She likes to get a drink whenever one of the dogs does.

The kids love her, especially Abel who is oh-so-gentle with her!
When she purrs he likes to lay his head on her to feel the vibration.

Wednesday, February 04, 2015

Its been awhile

Hi everyone.

I'm still here. We're still here. Life is good, just very, very busy. I like it that way! I have some projects underway I want to blog about but I'm having a lot of trouble putting my fingers to the keyboard these days.

Tomorrow I will have my 6th surgery in 10 months.

Oophorectomy. Ovary removal. Take those suckers out to decrease the level of estrogen in my body. Decrease the estrogen that fuels my cancer. Its just an outpatient procedure, but thats how they do a lot of these surgeries now. Three of my major surgeries have been outpatient and I was home in my recliner - heavily drugged - by 5:00 pm.

It is kind of weird that Dean and I have a routine worked out for when I have surgeries: who does what to get the house ready for me to be out of commission, what to do with the kids on surgery day, knowing how long it usually takes for me to wake up from anesthesia, get through recovery, etc. Who in the world makes surgery part of their normal? Today I was getting kids of buses, telling drivers who will be here with the kids tomorrow. One of the drivers said, "Well, you always recover so well and jump right back into life."

"Always" because this is normal for us. That's just weird.

And yet there is always that tiny fear. In the last week people have made comments like, "This will be a piece of cake compared to your other surgeries." and "You'll be back to yourself in no-time." Those statements feel like a foreshadowing to me. Kind of ominous. Like this one surgery that is supposed to be so simple may not go so well. But I will do what I always do, making sure Dean knows where all important documents are, just in case.

You'll be happy to know my left foob (fake boob) is looking fantastic as my plastic surgeon continues to expand it. It almost looks like a nipple-less breast now. Oh, oops! I almost forgot that the expander slipped under my arm so it looks like a nipple-less breast under my arm. Aren't you glad I don't post pictures?

My right side, the one with the horrible infection over Christmas, has healed nicely. In the world of breast cancer reconstruction that means I don't have open wounds anymore. What I do have though, is a huge dent and some creases that don't belong on a woman's chest.  All my tops look a bit odd with only one boob. Occasionally I wear a prosthetic but I get so HOT with it. Most of the time I just wear bulky sweatshirts. This is the first time in my journey that I have felt uncomfortable with my appearance. As you can imagine I'm looking forward to April when I can start rebuilding that side again, and next fall (next FALL!) when I can have my final surgery.

So tell me, what have you been up to the last month? What is consuming the majority of your time? I'm making some changes in our life that I can't wait to tell you about. Where do you feel you need to make changes in your life?