You Can Dance If You Want To

Sorry, the title is a reference to the Men At Work song, You can Dance If You Want To. (I used to love that song.)

I tried to plan a way for Mary to do everything she was looking forward to this year before she got the fixator on but the one thing that she wouldn't be able to do would be her 1st dance recital in the middle of June. In my original conversation with Mary, she brought it up and I apologized saying I tried really hard but it was the one thing that we couldn't do before the fixator was put on. However, I remembered at the recital last year there was a girl on crutches on stage and I thought I overheard a comment that they had a girl in a wheel chair on stage before. I told Mary I would ask her teacher what was possible.


Well, she has an AWESOME teacher that is very open to making something work! She missed 2 weeks of class then I talked to the teacher to see if it was practical that Mary really could really participate in the recital and if it was fair to the teacher and other kids in the class. Her teacher said yes and seemed genuinely very excited about having Mary participate in her wheelchair!


So on Wednesday Mary went to half the class. The teacher had already prepped the kids and Mary gave a short simple explanation of what she had and the medical procedure. Just like her class at school they were very respectful. (We were all nervous because it is a very large class and we don't really know the kids.) They just had two questions:

• how do you fit in the car, and
• how do you sleep?
• the teacher asked if it hurt.

Then they practiced the dance a couple of times before Mary left. A high school student will be pushing Mary in the wheel chair.


I wasn't there but both Mary and Daddy said it was a very positive experience. Whew! This was the last thing I was stressed about because I just didn't know if it was practical and how the class would handle it. Her Daddy gave just one suggestion that Mary doesn't have to be front and center the whole time. We realize the other parents would like to see their girls (and the one boy) dance.

So I guess the song is true...You Can Dance If You Want To!

Physical Therapy Guardian Angels

Just like the day we were supposed to leave the hospital and I had no idea how Mary would function at home, today the Physical Therapist swooped in and changed our lives.

This morning I was frustrated with the fixator and getting the sense that Mary was frustrated too. For example, at 3:30 in the morning she said her leg was uncomfortable but she couldn't think of anything I could do to help and she claimed she didn't need medicine - I felt frustrated and I felt the honeymoon (if you could actually call it that) had worn off and we were stuck with an uncomfortable thing to deal with for 6 more months that we had no tools to help make more comfortable.

However, today she had her first Physical Therapy appointment. Even though her permanent therapist was trained by "Mean Mary" he was very nice :-). After the appointment I had more hope that we had tools to teach Mary how to use the leg so it is more comfortable.

The main lessons were to do exercises every hour. We need to work the hip, knee and toes. She needs to teach the muscles how to move again. Before working the area, she should flex the associated muscle and then do the movement. For example, flex the quad then do a leg lift.

He measured her range of motion in her left knee to be 55 degrees and the goal is 90 degrees while she has the ring on her thigh. (Her right leg can do 160 degrees.) 

Her left leg can straighten to a -15 and the goal is 0. (Dr. Scott wants at least -10 degrees or we have to pause the lengthening.) 

By the end he was showing her how she can in fact roll from front to back and back to front in bed all by herself so she doesn't need to call for mom and dad's help in the night. At this point in time Daddy was offering the Physical Therapist a trip to Paris for a week. :-)

The PT also advised to put a pillow under her tummy when she lays on her tummy to sleep vs. under her hips like we have been doing.

We also learned that it is more important to help her do the movement so she does the move correctly vs. she move all by herself incorrectly. For example, just the past couple of days she has started lifting her leg on her own during leg lifts but she has to lift it out to the left to do so which isn't correct.

He also advised we massage the two incision sites and her muscles to get them moving again. That's good news because she likes me to massage her.

We will see him weekly for a couple of weeks to make sure we are on the right track. We all want to make sure she can straighten her leg so we don't have to pause lengthening. It was no surprise to us once the two pieces (top ring on her thigh and the piece on her foot) are removed in a couple of months she will have a lot of work to do to get the ankle (and knee) moving.

Mary will need encouragement to do what she learned today but I am confident that just like initially, when she was hesitant but would try and would always feel better afterwards, that she will learn to use her muscles again and regain range of motion that she will feel more comfortable. (Of course, I haven't gone to bed yet tonight :-))

After PT Mary saw her doctor and the Taylor Spatial Frame rep to add a second U piece to her foot to give her a platform to bear weight on.

Original - single U piece

New and improved- double layer

The only problem is they also gave Daddy wrenches for the fixator so now he feels important :-) Actually they are good to have when the struts get more and more resistant during our daily turning...something to look forward to...




2nd Real Doctors Appt. after Surgery

Today we had our 2nd appointment with our doctor. We took another x-ray and the great news is we seem to be on track! It isn't a precise measurement but the difference between the bone appears to be 13 mm. So we can officially say 1+ cm down!!! 4-6 cm. to go...

2nd X-ray - 5/29/12

The pin sites still look good but all of the bending Mary was preferring in my post below turns out to be not so great. My hubby can explain it better than I can but it turns Dr. Scott would rather have her leg straight vs. bent. I guess as it gets longer, the tension becomes greater and the starting point of the range of motion shrinks but it is very important to be able to straighten the knee otherwise we have we have to STOP lengthening until she can do so again. This also explains why Mary had trouble sleeping early this morning. She was saying her knee was really uncomfortable because it was bent and we had trouble straitening it.
Surprisingly we didn't have any questions but Mary had 3:

• At one point Dr. Scott said she could walk on the fixator leg immediately but she may not want to but when we left the hospital we were told no weight bearing. Why? He explained that he will put a second piece under her current U-shaped piece on her foot to give her a platform to bear weight. So we are going back for a quick visit after physical therapy tomorrow to get the piece added. It will require getting used to the additional length and the required clearance it requires for example when "hopping" into the car and stepping into the shower.
• How soon after the ring on her thigh and the foot piece are removed can she walk? Again the response was technically immediately but she may not WANT to walk on it immediately.
• Will she ever be able to run with the fixator on? He said you could once the lengthening is over but in reality the wire tends to scrape the other leg so you won't want to.

We were waiting to see if he had the hardware for the additional foot piece when Dr. Scott popped back in and asked Mary if she minded talking to a girl in the next room that has the same thing Mary has. She said she didn't mind and a lovely girl just a little younger than Mary and her precocious little brother came over. It was the first time Mary has seen/met someone with the same thing she has. It was nice to get to talk to someone about it and answer questions vs. being the one with all of the questions. I gave the mom my contact information if she wanted more info. It was a very happy  experience for both me and Mary.

Dr. Scott doesn't want to see us for 3 weeks (after getting the additional hardware on tomorrow.)

Then we went to the Physical Therapy Dept. to confirm the parents can be at the first appt to learn and the following appointment the parents typically just wait in the lobby.

Today was also a big day for both Mary and me. I returned to work which was really hard but ended up going better than I expected because it was a mellow day at the office. Mary went to school to pick up her Little Sister for the first time. Everyone was excited to see her. Her teacher gave her a hug. The father that is an Occupational Therapist gave her words of encouragement and another mother who turns out to be a surgical nurse said the pin sites and skin look great. The kids were kids. Very excited with the older ones being able to handle the scary contraption better than the younger ones. Mary didn't seem to mind the awkward responses. I am so glad she doesn't seem self conscience about the fixator.

Not painful but not comfortable

Mary's pain management seems under control but she is still adapting to the uncomfortableness of the fixator on her leg. We think it weighs close to 10 pounds so that means she is carrying an additional 20% of her body weight on her left leg now.

The good news is that her range of motion in her knee seems better. So much so that when we were in the car yesterday she said her leg felt stiff and uncomfortable and she wanted to bend it and prop it on a lower prop.

Original car position: straight leg with a trashcan to rest her leg on.

New car position: knee slightly bent with a step stool to rest her leg on. Original trashcan is in the picture.

She made the same comment at the kitchen table. She had already transferred from using the wheelchair at the table to a chair with a pillow behind her and a prop for her foot and now she is facing forward, bending her knee some and using pillows for a lower prop.

Her toes bug her a lot and she loves to have them held up straight like they normally would be if she didn't have the fixator messing with her tendons.

Old picture but it shows how she wants her toes held up

We verified with our doctor that its OK if we use a toe strap we made. My hubby found the strap and I made the toe pillow. She likes it but prefers your hand over the strap.

Homemade toe strap

She is doing better at night because she now sleeps a portion of the night on her tummy.

But she still struggles at night since she can't move the fixator on her own so she calls for help to move into a new position and to have her toes stretched. I am hopeful she will continue to gain more and more control. It should be so much lighter when the foot piece and thigh piece come off in a couple of month leaving only the two rings on her calf.

She can do more and more things on her own but I have to remember she still can't sit down on her own. She needs you to lift the highest ring onto whatever she is sitting on and help lift the bottom portion as well because it's too much weight for her now. What she can do is pull herself up.

Stairs are easier going down because you help her sit down, you hold her leg as she descends each step, and then she pulls herself up at the bottom.

Going up is trickier because you help her sit down, you hold her leg as she scoots up each step, and then she needs a little help standing up at the very top but even with that you can tell she is getting stronger. (That move is so much better than the ice skater spin move the Physical Therapist taught us at the hospital.)

Mary's most comfortable and favorite place to be is in the recliner my sister loaned us.

We have a doctors appontment tomorrow. Mary's questions are all about mobility.

• How soon after I get the first two pieces can I walk? 
• Will I ever be able to run with the fixator on?

Sisters

Mary and her Little Sister seemed to find their groove this weekend. Both mornings Little Sister went to Mary's room when she woke up and hung out with Mary for a long time just like they used to do. They are finding new ways (and remembering old ways) of playing together.

Working on a project together

Mary fixing her sisters hair like the old days

Tadah!

This morning Mary even let her Little Sister try to help her move her fixator so Mary could get into a more comfortable position and she could do it. Mary was effusive with her compliments and her sister said Mary was a good at complimenting.

Now that we know that her sister can help her move the fixator I taught her how to help Mary down the stairs which going down the stairs just involves holding the fixator while Mary scoots down from one stair to the next on her bum.

Before dinner they were in our backyard by themselves and surprised me by collecting a bouquet of flowers for me.

My flowers

Swimming

We went to my sister's house today to give swimming a try since our doctor is a huge fan. It didn't turn out to be the warmest day so she didn't get all of the way in but it was a good first try.

Getting in



Both Daddy and Mary borrowed wet suits from my brother in law since it wasn't very warm



Warming up after getting out

Mary liked how easy it was to move her leg in the pool. She told me later it was hard though because she couldn't play like she used to in the pool and being in the pool reminded her how hard it is to have the fixator on her leg.

Her Cousins surprised her with an ice cream cake to celebrate the first 1 cm. (hopefully) she has grown in the past 10 days. She loved it!

My sister wrote "Happy 1 cm." vs. having the store do it because she assumed the store would think it was a very odd request

Just a little happy about the cake

We are happy we kept an eye on how long our outing was because she was pretty worn out tonight physically and emotionally. She started complaining it is hard to get comfortable with the fixator on, etc. She took Regular Tylenol before bed which she hasn't done since our first few days home from the hospital.

"Ow, Ow, Ow"

Last night my hubby remembered to tell me that when he was talking to our 4 year old Godson this week and asked him if he had any questions about Mary's fixator our Godson asked "How come she doesn't say "Ow, Ow, Ow?"

Mary's pain tolerance has been amazing. If she takes medicine at all it is Regular Tylenol and it's during the night. However, it is hard to hear her cry in her sleep. I have heard it 3 times since we have been home from the hospital, one of which was last night. She eventually wakes up and takes medicine.

We ask her daily before we turn her struts if she wants medicine and she refuses. She doesn't like the turning because she says she can feel it. So far I think it is more weird than painful but I know it will be truly painful at times.

We are 10 days into turning the struts. That should equate to 1 cm. but it must be confirmed by an X-Ray. My goal is 7 cm. so that she would only have a 1/2 cm difference but it's not up to me but rather Mary and her body.

We have our first Physical Therapy session on Wednesday and we are expecting that to be our next big phase in this procedure. "Ow, Ow Ow!"

Mary's 1st Fall

On Friday evening Mary was using her walker and lost her balance. She used her fixator leg to catch herself which didn't feel so good and caused blood from her least favorite top pin site. She recovered quickly though. 


We know there are chances of falls. I luckily happened to be right behind her when it happened and I helped her recover but I think she would have been able to do it by herself. I am not looking forward to if she ever falls completely and lands on the ground.


Mary tends to push herself too much now and she should probably not use her walker for as long as she does at times. I believe she is now reluctant to use her wheelchair and prefers being more "normal" with her walker. As long as she is safe I guess I should enjoy her "drive" because it will serve her well with this whole process (and of course life). I am learning she has more drive than I gave her credit for previously.

Our First Elective Outing

On Thursday we had our first non-doctors appointment, elective outing. We went on a few errands. Mary wanted to use her walker but only made it through the first store (Beverly's) then she moved into her wheelchair for the second store (Bed, Bath & Beyond). Mary said her leg hurts if she just stands with the walker and her arms hurt if she walks with the walker. The walker is very slow but with the wheelchair you have to be aware of people popping out in front of you in aisles, fitting down aisles, etc.


Your world really opens up to ADA regulations. There were a ton of close parking spots but we needed to use our temporary handicap placard just so you have room to get in and out of the car with a walker/wheelchair.


Everyone was very nice in public. A few awkward glances (she was wearing one of her long skirts which hides the fixator except for the piece on the foot) but over all not a bad experience and we all survived. Mary did choose to stay in the car with me while her Daddy ran in the last store we needed to go to.


As I was told, you don't move anywhere fast with a fixator. We will need to plan on leaving a lot earlier than we used to, and allow extra time for whatever we are out doing.

Starting our outing

Regular Coffee

I fell in love with Peet's Coffee once I became a mother because it is stronger than Starbucks. However, my hubby stopped drinking regular coffee prior to the girls being born.


Mary's leg lengthening procedure has made him start drinking regular coffee again and not only in the morning but in the afternoons as well. That says a lot. I actually couldn't believe it was true the first time he said he was going to have regular coffee. 


Everything is going wonderfully but the 5 days in the hospital are exhausting and getting up in the middle of the night several times a night just like with a newborn take a toll. I have actually been feeling pretty good sleep wise (Michael hasn't thus the regular coffee) but Monday and Tuesday nights were extremely rough. Mary was up for 4 hours straight in the middle of the night on Monday night. I am guessing there was more on her mind than she was expressing (maybe about the doctors appointment the next day), she has trouble sleeping on her back and feeling pain in her leg.


Tuesday night was an improvement with being up only 3 hours straight versus 4 hours the night before and being able to verbalize she had a bad dream and pain in her foot.


So if we are looking a little ragged we at least have an excuse :-)


However, last night Mary tried sleeping on her tummy like she naturally prefers and it was such a better night. I don't want to jinx the new "cure" but I do think it will make nights better. She had tried sleeping on her side which she preferred but I believe it caused more pain in her leg because her leg was almost frozen in one  position. We currently have to roll Mary onto her tummy and place a pillow under her left quad but ironically during the night she rolled onto her back by herself...The more you can move the leg the better it will feel.


As I write this I may have already jinxed the new sleep cure. Mary can't get to sleep again tonight and she is on her tummy. She also just took regular Tylenol for foot pain and she hasn't had medicine in days. I better get to bed I guess, sounds like another long night!

Finding Normal in the Abnormal

It is amazing how quickly the abnormal becomes your new normal for example, how quickly you adapt to life in the hospital. But I also have been reminded it is important to find normal life within the new abnormal (life with a fixator). The world can't stop for a child in a fixator. Yes, there are definitely allowances but there still must be chores, expected behavior, etc.

My younger daughter still struggles with all the attention Mary gets. This is TOTALLY normal. I understand it and and I expected it. We try to make sure life isn't all about Mary while still of course taking care of Mary's new needs. Ironically, I am sure this is totally similar to how the older child (Mary) felt when the new baby came along. The blessing is that my little one is so wise and in tune with her feelings and able to communicate them that she talks to me about it all. YEAH!!!

As I have said, Mary is doing so great with her new world. Her pain tolerance still amazes me. She is still building back her stamina and appetite. Her only struggles so far are 1) sleeping since she normally sleeps on her stomach and now she can only sleep on her back and 2) the sadness about the things she can't do or play that she used to be able to do and play. The good news is that in approximately 2-3 months Mary will get the piece on her foot and the piece on her thigh off. Thankfully those are the two pieces that bug her. When those two pieces are off her world will be more normal than not as far as what she can and can't do!!!

Mary has no shame about her fixator and I would love for that to continue but I wouldn't be surprised if it doesn't. We have found it's best to just let people we know look at the fixator (if they are interested) vs. force them to try to steal glances. We realize it's not for everyone- lots of wires and thick struts that take some getting used to. If you don't like needles it's probably best not to look. My hubby and I realized when you go to Children's Hospital you always see a poor child with some challenge that breaks your heart and now our daughter is one of those kids to other people because she has this scary contraption on her leg. 

She is going to be so strong mentally and physically after all of this. I felt her arms today and they are already noticeably stronger from the walker, and from moving with her upper body doing most of the work.

Playing catch 12 days after getting the fixator on

Photos: Days 11, 12, & 13

Mary reading to Little Sister in bed on Sunday morning

Little Sister pushing Mary's wheel chair on our walk. When we told her about Mary's medical procedure this is the one thing she was excited about- being able to push Mary like Mary pushed her in the stroller when she was a baby.

Whoa!!! It is hard to steer since it naturally wants to veer right with the weight of the fixator.

Watching the Ducks, Canadian Geese and Goslings like we did when they were babies.

Watching the Solar Eclipse with the homemade contraption they made with Daddy

View of what they saw.

Mary's classmate each made a flower and gave her a beautiful bouquet in a vase. It made her smile.

First homework packet

Mary saw the Charlotte's Web movie at school so she didn't want to read the book with me when I offered but when it came home in her homework packet and she actually read it she couldn't put it down! Books are always better than the movie!

Sharing coloring activity received from her Aunt, Uncle and Cousins in Texas.

We actually have blueberries to harvest this year. Mary was sad when she realized she couldn't harvest but her Little Sister suggested Mary hold the bowl while her Little Sister harvested. A good compromise.

Our 1st Real Doctors Appt After Surgery

We had an appointment last week but our Doctor was out of town so we saw a substitute who doesn't specialize in External Fixators so we knew to hold our questions until this week.

First Mary had her 1st of many X-rays with an external fixator on:

She had two views taken but unfortunately I forgot to get a picture of the second view. You can buy a disc at the end with  all of the X-rays taken during this process. We will because it will be neat to have.

Then we met with the doctor and got our questions answered:

• How do the pin sites look? Some are not so pretty in our opinion. He explained they are fine and the two on her thigh look the way they do because those are the 2 that go through muscle. She is doing a good job using the muscles so there is a "path" being created. The one wire on the top of her lower leg that she doesn't like is the one he explained went in first so that's why the skin is "dented" in around it. He explained infections will be red round halo like circles further from the actual pin site. He wants us to come in when we suspect one so they can verify vs. having an antibiotic on hand to fill when we suspect an infection. Once we know what a true infection looks like we will have a prescription for an antibiotic we can just get filled.
• Is there any concern to her retaining fluid in her lower leg? He stated no, some people just do.
• Do we still need to elevate? He said its not necessary anymore.
• We understand there will be discharge but is pure blood OK? He said yes.
• Does he recommend cleaning the pin sites everyday with peroxide? He says yes. (FYI: Some doctors prescribe just soap or water and some prescribe saline.)
• Do we need to turn the struts at a similar time everyday? He said no.
• Is it OK to break up the different struts at different parts of the day? He said yes.
• What do we do if the struts slide back to a lower number? He said it happens and its OK, just catch it up at the next turning.
• We confirmed just because we have turned the struts "x" many millimeters doesn't mean that the bone has grown. X-rays are the only way to verify the bone growth.
• We explained Mary has taken Tylenol with Codeine only a couple of times since we were discharged. If she has taken meds it has been regular Tylenol and lately she really isn't taking any meds for pain. We asked if that is the new normal or will there be times the pain comes back? He explained we should expect the pain to return at different times in the future.
• Mary tends to get chills without a fever now. He didn't have an explanation. We assume it's just from physical exertion.
• What does he want achieved in Physical Therapy? He is looking for range of motion in the knee and to make sure she is using her walker which she is.
• Can we make a strap for her toes? Yes.
• Should we be concerned about being in the pool too long and getting "pruney" opening up the pin sites? He said no.
• Can we use lotion on the fixator leg if we avoid the pin sites? He said yes but didn't recommend sunscreen.
• What is our schedule of visits? He will see us next week but then will probably skip 2 weeks. We will never go 3 weeks without seeing him.
• How frequent will she get X-Rays? He said probably every other visit (1-2 per month.)

Dr. Scott said Mary is doing great because at this point most patients are still getting used to having the fixator and have anxiety about moving with it etc.

Photos Days 9 and 10

Playing Lego's

Starting our walk with the walker- she made it 4 houses away then needed the wheelchair.

Helping throw the bumper to her puppy at the park

Making pot holders (a new activity) just like her Mommy did when she was a little girl

 

Breakfast in bed on Saturday



Watching Anne of Green Gables movie.  We read the books and loved them!

Puppy helping with Mary's leg exercises

Little Sister sharing her new doodling book with Mary- finding a way to play together in their new world

It Takes a Village

I keep saying this medical procedure is very similar to having a newborn. (Luckily you aren't physically recovering from anything yourself.)

People are very generous with their time, assistance, and talents and it is important to accept. It makes them feel good and honestly YOU NEED IT!

We have had:

• A friend switch cars with us,
• A friend made ramps for our sidewalk for a wheelchair,
• A friend's mom who is a nurse came by and did a "house call" to check on Mary's pin sites, and answer all of our random medical questions,
• A classmate's Dad who is an Occupational Therapist came by and gave us tips on how to help move Mary while taking care of our bodies too,
• Many friends have brought or are scheduled to bring us dinner,
• Many friends have helped pick up Mary's Little Sister from school,
• Many friends are coming by for short 30 minute play dates, or taken her Little Sister for play dates,
• Friends have brought us groceries,
• A friend has offered to take our puppy for play dates at their house,
• A friend ordered a couple weeks of produce to be delivered to our house,
• Friends have helped with Girl Scout duties,
• The school (especially her teacher) has been supportive and has worked with us,
• Friends and family have accepted our request for help at the last minute,
• Many people have kept us in their thoughts and prayers!!!
• etc., etc., etc.

We truly appreciate it ALL and all of the help has made this challenging time so much easier. It helps so much knowing we have a strong support network that will help us get through this. THANK YOU!!!

Hard to Play

Mary is sad at times when she realizes she can't play things she used to play. Her little sister is struggling with it too and struggles to find activities to suggest that they can do together. Family and friends have been incredibly generous with gifts of books, arts, and crafts. So they have a lot of new fun and exciting activities that they are enjoying but the loss of what they can't do is present for both of them. Play dates are great but they also bring up the fact that she has to play differently now. She can't run around the house and do anything she wants to.  We (the parents) can easily hold on to the fact that we are lucky this is a temporary "problem" but it is hard for the girls. One activity Mary can still do so she loves to play it is Lego's. She has a wonderful imagination so it is naturally fun for her.

Playing Lego's like the Good Old Days

Little Sister sharing her new Doodling Book with Mary

Photos Day of First Doctors Appt. (safe to look at)

Watching video of turning struts

Step stool, trash can and pillow for car. I am so thankful our friends switched cars with us for as long as we need their mini van. Our car won't work.

Mary on the way to the doctors.

Holding the strut turning prescription as we turn for the 1st time.

Good Old Days: playing Lego's together

The finished Lego product

Our 1 and 3/4 year old lab returns home and checks things out

The unveiling after the removal of the gauze, a long shower and our 1st pin cleaning