Knee Improvements

Whitney went over two months without walking starting in January.  We saw a doctor at an instacare who insisted her leg was broken and put her in a cast.  But after the cast came off Whit still couldn't walk.  Her knee was inflamed and swollen and she wouldn't put any weight on it.  Next it was the orthopedic surgeon's turn.  He looked at Whit's X-rays and said there was no sign of a break in the original films and no sign of any healing in the new X-rays he ordered.  He suggested we get an MRI and look at the soft tissues in her knee.  When those came back, the various ligaments and tendons also looked fine.  That was a relief but we still didn't have an explanation for the pain and swelling in Whit's knee.

Next we headed to see a rheumatologist.  After examining Whitney, he diagnosed her with knee effusion.  He ordered some blood tests to determine the cause.  He was leaning toward arthritis but wanted more information.  So after the blood tests came back, we've been able to rule out rheumatoid arthritis.  We're glad Whit's immune system isn't attacking her joints.  But she does seem to have a juvenile form of arthritis affecting her knee.  The rheumatologist has prescribed some heavy duty anti-inflammatory medicine and scheduled some follow-ups with us.

The good news is that Whit has responded pretty well to the medications along with some steaming hot baths with epsom salt.  The swelling has gone down a bunch.  She's been able to walk pretty confidently for the last week although she limps badly and she's pretty tired by the end of the day.  In spite of that Whitney's happy to be able to get around again and she's even gone to school without the wheelchair for several days.

If things continue to be difficult for her, we can consider steroid shots for her knee.  But we'll take things slowly.  We'll see what the anti-inflammatory medicines can do for her first.  We'll also probably try a knee brace to give her knee some extra support.

It's good to be on the road to recovery again.  Thanks to everyone who's been so concerned about Whitney during this whole episode.  We really appreciate it and we're thrilled that Whit is back on her feet.  Hopefully, there will be more progress to come.

Weak in the Knees

Some of you may have noticed the date for Whitney to get her cast off came and went without an update from me.  That's because things haven't been going all that well.  After four weeks x-rays were taken of Whitney's knee and the cast was removed.  We hoped that would be all Whit needed to get back on her feet.  But Whitney's knee became extremely swollen and continues to cause her all kinds of pain.  She refuses to put any weight on her leg and she can't straighten that knee.  She has some motion in it and her ankle recovered from post-cast stiffness quite quickly.

So what is going on with her knee?  It was off to the orthopedic surgeon to find out.  He took a look at Whit's x-rays from before and after the cast and said there was no sign of a break in her tibia in either one.  So someone blew it and wasted a month of time that could have been used to help Whit recover.  The surgeon's opinion is that there is something wrong in the soft tissue of her knee that is causing the pain, swelling and reduced motion.  He sent us off to get an MRI of the joint so he could understand better what is happening.

So one more sedation and an MRI of her knee later, the surgeon's assistant has told us Whitney has a joint fusion involving the tissues in her knee.  This is better than having a problem where bone is grinding on bone.  But we've still got to figure out how to get rid of Whit's pain and get her on her feet again.  Her orthopedic surgeon is out of the office this week, but hopefully, next week he'll return with a plan.  We've been told it will likely involve a sedated session of manipulating her knee to get things to move back into place and start working again.  But we won't know for sure until next week at the earliest.

Melanie and I have been carrying Whitney around the house for six weeks now and using a borrowed wheelchair when Whit needs to go anywhere else.  Our backs are both shot.  Not to mention Whit's continued pain and frustration.  So we're praying for a correct diagnosis and some effective treatment that will get her back on her feet soon.

Fear of Falling

Due to near constant ear infections and other related issues, Whitney's balance has always been poor.  She manages it well, but when you watch her step off a curb you notice her hesitation.  We live in a home with lots of stairs and despite her issues with balance, Whitney has been brave enough to learn to climb them all by herself.  At first she would hang on to the handrails with both hands and pull herself up.  More recently her legs have gotten strong enough to walk right up them.  She's gotten very good at it, but her balance still comes into play.

The other evening when we were headed upstairs to bed, Whit lost her balance on the stairs and fell from about five stairs up.  She fell straight back and, due to her poor reflexes, didn't really catch herself.  Thankfully, she was bruised but she wan't seriously hurt.  The biggest injury has been to her confidence.  She's always had a fear of falling that comes from those balance problems and from the fact that she's just not quick enough to catch herself.  Falling like that has got to be terrifying.  And it took quite a while to calm her down and determine that she was okay.  Now we need to deal with the confidence thing.  Whitney's taken to sitting down and scooting up and down the stairs the last couple of days just to be safe.  I'm pleased that she's so cautious but I hope she gets back to walking up and down them again soon.

Whitney's had a lot of falls in life, both literal and metaphorical.  I'm grateful for her example of perseverance.  She always gets back up and keeps moving forward.  But all the same, I think I'll try to hold her hand a bit more tightly in the future.

New Ankle Braces

Whitney had a visit with her physical therapist this week.  The first one of the new year.  It was time to get measured for some new ankle braces.  Whitney has worn her current pair of Dynamic Ankle Foot Orthotics (DAFOs) for over two years and they were getting way too small.

As part of the fitting, the therapist watched Whitney walk with and without her braces.  Whit is actually really improving in her ability to keep her ankles straight without as much help.  She can keep her right one a lot straighter then her left.  So we're going to try something new.  On her left foot, she'll still wear a traditional DAFO that is custom molded to give her the support she needs. But on her right foot, Whitney will begin wearing a Cascade JumpStart Leap Frog.  The JumpStart is not custom molded but still provides Whitney with plenty of support.  And it's quite a bit cheaper.  Which doesn't hurt our feelings.

As always, the therapist let Whit pick out the colors.  And even though Melanie encouraged her to try pink or purple, Whitney insisted on blue trim for her new braces, just like in the picture here.  So the left foot mold is off to manufacturing and we'll await a new pair of braces to help Whitney get around on her own two feet.

Then it'll be off to the shoe store to find those all important new shoes.  By the way, picking out shoes to go over DAFOs can be a bit of a challenge.  Reader, Angie, posted just this morning about using Saucony running shoes in a wide width for her daughter.  They're light and breathable and worth checking out.  Thanks for the tip!  I'll report back on what new kicks Whitney will be sporting once the braces arrive.

The Wanderer

Whitney is always on the go. She likes to be up and doing things all the time. She's usually the first one to get up in the morning, even beating the baby at the early riser game. She's almost always the first one up from the dinner table and she rarely sits still for an entire bedtime story.

I'm grateful she gets up and gets around so well independently. Her mobility is a great blessing that took years to develop. But it also creates some new challenges. Because Whitney wants to be on the go, she really has trouble focusing. She won't sit still when she's in class, at the dinner table or sitting on my lap to read a book. After just a few minutes she gets up and starts to wander. And she gets so upset when Melanie and I try to get her to come back and sit down.

So we're trying to find ways to keep her focused longer. Whit doesn't really like being forced to stay at the dinner table until we're through, but I think it will help her learn that important principle. Same goes for sitting with me until we're done reading the book she asked for.

We're going to try and get the folks at school on board as well. Last year she was permitted to get up from her desk in the middle of class and wander the classroom. This year, Melanie and I are going to request that the teacher and her helpers, assist Whitney in getting back to her seat at her desk.

The hope is that if this is required of her everywhere she goes, she'll gradually learn to sit still and pay attention. That's a life skill that's just as important as being able to walk on her own. Wish us luck!

Whitney, Vacation Fun, and Discounts

We actually got away for a few days as a family last weekend. Our trip to Yellowstone was wonderful and Whitney had a great time. Visiting the geyser basins in the park requires a lot of walking along uneven trails and boardwalks. But Whit was very stable on her feet and walked a lot of it. When she felt unstable, she held the hand of a family member, but she kept on walking. We walked all over the Old Faithful area, Norris Basin and Mud Volcano and Whit just kept right on going. I'm really pleased by her endurance and mobility these days.

Whitney also understood a lot of what was going on around her while we were out. She heard us talking a lot about seeing various animals in the park, like bears, elk, deer and so on. So when we headed out on a walk our first morning, Whitney politely asked if we could go see the penguins and the tigers. Those are her favorite animals at the zoo and clearly if we were on a walk and going to see animals, we must be at the zoo! Melanie and I laughed and explained that we were going to see some different animals and Whit was satisfied. In the picture above she's signing deer. Whitney really enjoyed seeing the elk, deer, bison and the bear we managed to see in the park.

Our favorite thing about visiting national parks with Whit is that she has a special pass that the federal government issues people with permanent disabilities in order to access federal land for free. That means Whit's pass gets us into Yellowstone, other national parks and even BLM land for free. If you've got a family member with a permanent disability, you can learn more about getting a pass by visiting the USGS website. It doesn't cost anything to pick one up.

We all had a great time getting away. The pressures of doctor visits, appointments and daily care fade away when we all get to change our routine and relax for a few days. Below is a video of Whitney and our extended family having some fun in Yellowstone last week. We are all very glad we got to go.

Perspective

Lately some of Whitney's obsessions have been getting me down. I have to keep any and all printed papers behind a locked door or on top of my refrigerator if I don't want Whit to find it, tear it into pieces and then randomly eat some of the pieces. It makes me so frustrated. Whitney has torn up rolls of stamps, bills, countless books and even DVD cases. I'm one who's overly sensitive about keeping my stuff "nice." and it's extremely hard on my attitude because of Whitney's obsession with folding, tearing and chewing.

But sometimes a little perspective really helps me see things for what they are. This past week I was reviewing old posts on this site for broken links and missing videos and ran across what I wrote on November first, over five years ago. It was Whitney's first mess and I was so proud. Whitney was two at the time. And she dragged herself across the floor to reach the VHS tapes and scattered them across the room. This was a big deal. Melanie and I practically had a party.

Now, at the age of seven, Whitney can walk and nearly run. She can reach any counter, tabletop or shelf in the house. And she does it with confidence. She has come so far. Sometimes this takes a toll on keeping my stuff neat. These circumstances can be seen in a positive light or a negative light. But a healthy dose of perspective helps the positive shine a lot brighter.

Now, has anyone seen this month's power bill? I swear it came in the mail just the other day...

Taking the Stairs

In my post earlier this week, I mentioned how Whitney has now decided to take the stairs standing up. Melanie and I can safely say it wasn't our idea either. Just our independent little girl deciding to do it. Melanie caught Whit in action now so you can have a look. Just please hang on tight to that rail!

Adventures with the Stairs

Our little house has quite a few stairs. There are stairs from the main floor up to where the bedrooms and toys are and stairs to go down to the basement where the kids like to play and watch TV. Because things are so split up between the floors of the house, Whitney has had to learn to navigate stairs since very early on in her life.

These days Whit is walking pretty much everywhere she wants to go. So it's frustrating to her to have to get on her hands and knees to go up or down the stairs. Melanie has been working with Whitney on walking up and down the stairs for some time. But Whit still lacks the leg strength to do it independently. Also, some of the handrails in the house are too large for her small hands to hold effectively for support. But that doesn't seem to stop Whit's determination.

Just yesterday Melanie was doing some things in the basement. When she looked up, here came Whitney walking down the stairs without any help at all! She was holding tightly to the hand rail, but she did it all on her own. Melanie figures she must have stood up, and walked to where she could reach the handrail. Then she hung on for dear life and stepped off. I wish we could have caught the whole thing on video. We were very proud. With a little more work Whitney will be doing the stairs in a downward direction by herself all the time. And I'm sure going up will come in time as well.

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The stairs are also our time out place when Whitney or Liam need a moment to calm down. Melanie and I will set Whit on a step a couple up from the bottom and let her calm down for a minute before we talk about she's being disciplined. This usually works pretty well, but over the weekend we did have a mishap.

Whitney was very upset about a toy she wanted to play with, but couldn't have because Liam was using it at the moment. She proceeded to throw a pretty good little fit. Screaming, hitting and rolling on the floor were involved. Melanie put Whit on the stairs in time out to calm down. But Whitney wasn't having any of that. She pushed herself bum-scoot style down the couple of steps to the landing. She did the whole maneuver with such force that her back side came down very hard on the vinyl flooring on the landing.

Pop went Whitney's tailbone as she screamed in a more sincere tone now. Melanie raced to the rescue but the damage was done. Whit seems to have bruised her tailbone. She was very sore on Saturday and still refused to stay in her school chair on Monday. It's not keeping her from walking, but we know it's painful by how she acts. We've been treating it with a heating pad and children's ibuprofen. Hopefully she'll heal up quickly. Poor little girl. I doubt she'll try that particular little tactic during her tantrums again.

Gaining Strength and Having Fun

Whitney's strength continues to improve. Melanie has made our walks around the block almost a nightly thing now. And Whit will go most of the way without even reaching out for our hands. Her stamina is really improving and so is her stability. Step after step she proudly walks along. Sometime the neighborhood kids will stop their playing and shout, "Hi, Whitney" and offer words of encouragement. Whitney smiles and often waves back as she walks along.

There are other benefits to her improved body strength as well. For the first time Whitney is able to swing on our glider swing out back. Her trunk is so much more stable. She just hangs on and enjoys the ride. Melanie and Whit are demonstrating Whit's new swinging ability in the photo here. Whitney is pretty proud of herself for being able to do yet another thing she sees the other kids doing.

Taking a Walk

Our family has gotten involved with a new past time in the evenings this summer. We like to go for walks around the block our house sits on. Why do we like doing this? Because we can do it without a stroller or a walker! Whitney can do it almost without any help at all. Here's a shot of Whit coming around the corner and heading on up the street all by herself.




Taking a walk like this as a family never fails to put a smile on my face. It reminds me of just how far we've come.

Cascade Dafo Saves the Day

This post is going to read like an endorsement for Cascade Dafo, the folks who make my daughter's ankle braces. It's not because they've paid me anything, but because they've gone above and beyond the call of duty to help my little daughter out.

On Monday, Melanie took Whitney back to the Physical Therapist to see what could be done about Whitney's new braces. They had rubbed her skin raw and caused bruises along the inside of her ankles. After looking at Whit's ankles and at the braces, the PT concluded that the braces do fit properly based on how the molds came out. In other words, Cascade made the braces correctly. But they don't have sufficient arch support. This causes Whitney's ankles to turn inward enough to hurt them with the constant pressure and rubbing.

No amount of padding or recasting could really fix that problem. But the PT contacted Cascade and together they decided to approach the problem with a new type of ankle brace that should provide a lot more arch support.

Cascade will be able to make the new braces from the foot molds they already have on file for Whitney, which will save us time and another office visit. The best part is, when Melanie mentioned they needed to rush the order so Whitney could have them before an upcoming trip, they said, "No problem!" They'll make sure to have them delivered the day before we leave. And they're not going to charge us anything for the new braces!

And it doesn't end there. We now have a stock pile of three different sets of braces that don't fit Whitney any more. Melanie asked if there was some way to donate those to a child in need. Sure enough, Cascade takes donated ankle braces that are no longer being used. And they'll add padding and other things to make them work for children who need them and can't pay for them.

It really impressed me to hear of a company, especially in the medical device industry, that is so responsive to individual customers and kind to those in need. They actually care. And Whitney will be able to walk on our trip thanks to their attention.

Ankle Brace Pain

Whitney is now on her third pair of DAFO ankle braces to give her support when walking. The braces make it possible for her to keep her balance and walk without her ankles rolling inward due to low muscle tone.

However, we've encountered a problem that we didn't have with her first two pairs of braces. The left one has started to rub Whit's foot raw. Melanie noticed Whitney's reluctance to walk after only a few days with the new set of braces. She assumed it had more to do with the new pair of shoes she'd bought to go with them. But Whit began to protest no matter what shoes she wore with her DAFOs. So we knew it must be the new brace.

Soon we began to see redness at the points where the brace was rubbing. Then around her left ankle we began to see bruising as well. We've stopped using them and Melanie called the Physical Therapist's office. They'll be rushing us in to get a new mold cast which will hopefully provide a less painful fit for Whitney's foot. They may also be able to solve some of the problems with a little more foam in strategic places inside the brace. Cascade, the good folks who made the braces, guarantee them for life. So the new fitting won't cost us anything.

They're going to make it a priority job because Whitney's old pair of braces no longer fit and she's left with wobbly ankles without them. Thankfully her sore ankle has begun to heal. But we've learned an important lesson. We'll be sure to keep a closer eye out for painful spots on her feet in the future.

Oh, and by the way! Whitney loves sparklers! As you can see. Now we've just got to teach her not to try and touch the part that's burning. :-)

New DAFO's, Shoes and a Growth Spurt

Whitney's new DAFO's finally arrived and she got to try them on for the first time yesterday morning. They are quite a bit bigger than her last pair, but that's because Whit is quite a bit bigger too. Her physical therapist commented on Whitney's height. Our little lady seems to be getting quite a bit taller lately and her feet are definitely growing as well. We don't notice it since we're with her all the time but it's always good to hear from others that see Whit's progress.

The exciting thing about her new braces is their shape. Now that Whit's feet are longer her braces are a more typical shape. The ratio between width and length of her old braces made typical shoes from the shoe store impossible. Hatchback shoes worked great for Whit when this was a problem. But I'm thrilled to report that Whitney can now wear shoes made by pretty much any one. The only person more thrilled is Melanie. She's been to the local shoe store three different times since Thursday and has bought three or four pairs of new dress and casual shoes for Whitney. Whit's never had such variety of styles and colors to choose from before. And she's really having a good time with some, previously unavailable, shoe fashions. I'd better hang onto my wallet. The ritual mother-daughter shoe shopping has begun!

Time for New DAFOs

Whitney's feet seem to grow incredibly slowly. She's been wearing her current set of DAFO ankle braces for almost a year now. But they're starting to get tight and her little toes are sticking a bit far beyond the end of them.

So last week it was off to the physical therapist's office again. The therapist turned on some Elmo for Whitney to watch while she took new molds of Whit's feet. Whit was sufficiently distracted that she really wasn't bothered by the wrapping process going on down below.

Once the wrapping had hardened, the therapist cut off the molds and Whit was free to go. In about a month Whitney will be fitted with her new braces. They'll likely reach just above her ankle even though the molds reached up quite a bit higher.

They should get my little girl through another year of growing and learning to walk. The braces she's had have been instrumental in helping her get confident on her feet in spite of her floppy ankles. It's amazing the progress that is made possible by some carefully crafted, molded plastic.

Walking Improvements and Exercise

Melanie continues to work hand in hand with Whit's PT at school on walking. Repetition and practice are the two main themes. And they are definitely paying off. The video accompanying this post shows that Whitney can make it across and entire room now without much help at all.

We're also working on some additional exercises to help Whit be more nimble on her feet. Her favorite is Ring Around the Rosies. We join hands and walk in a circle while reciting the children's rhyme. This forces a side by side stepping motion and it also makes the whole exercise a game. Then we all sit down at the end. Whit always anticipates this and sits down a bit early. Laughing the whole time, of course.

The next piece of the puzzle that needs to fall into place is Whitney deciding to take steps on her own. She's very confident when we haul her out into the middle of the room and leave her there standing. But she never stands up and decides to let go of the couch, table or counter and go walking on her own. I'm sure she's close though. And as you can see from the video she gets plenty of encouragement from other children.

Walking for the Camera

Thanks everyone for all the kind messages of congratulations. We wanted to share Whit's success with all of you. So here's Whitney walking for the camera. She sure is getting confident on her feet!

Walking!

Melanie and I are excited to announce that Whitney has reached another major milestone. The funny thing is that neither of us were there to see it. Whit went off to school today and came home with her usual "Today at school I..." note in her bag. But at the bottom, her physical therapist wrote, "I took 3 steps by myself when I worked with Ms. Carrie!!"

Forgive the misspellings, I'm tearing up as I type today. It was such a happy shock. Melanie called Carrie to get more details. During PT time each Monday, Carrie and Whit go to the little gym at the school and work out. Today, Carrie stood Whitney on her feet held her hand outstretched. Carrie held out a toy monkey that Whit loves and then let go of Whitney's hand. And somehow, Whitney not only stayed standing, but she took one step. Then two and a quick third one as she fell into Carrie's arms! Whitney walked!

The PT was so excited, she showed the trick to Whitney's teacher back in the classroom and Whitney walked again!

Whitney is almost five years old. Melanie and I have wondered for a long time when she would take her first true steps. We don't have to wonder anymore. Today is the day. A victory like this is all the sweeter when it has taken so long to achieve. Congratulations, Whitney! And thank you Carrie!

Tethered Spinal Cord and Weak Legs

Whitney chasing ducks in Boston Common

There's been some recent discussion in the Yahoo 1p36 Support group about tethered spinal cords in our kids and its symptoms.  A tethered spinal cord is one where  tissue prevents the spinal cord from moving appropriately within the spinal column.  Symptoms include lesions, hairy patches, dimples or fatty tumors on the lower back; foot and spinal deformities; weakness in the legs; lower back pain; scoliosis; and incontinence.

Melanie and I have discussed some of the symptoms that Whitney seems to exhibit.  She has a dimple, or small pocket in the skin, that is at the base of her spinal column.  At birth, the doctors were concerned and performed at least one ultrasound to determine there was no nerve damage. Once everything looked okay, it was kind of put on the back burner.  Whitney, and most 1p36 kids, are a little hairier than typical children, and most prominent, she has very weak legs.

At this point we're concerned that perhaps a tethered spinal cord might be a factor in Whitney's slow progress toward bearing weight and walking.  We're not sure she has this condition, though, so our pediatrician recommends performing an MRI on the area to see what's going on.  

I have to admit I'm not 100% convinced about all this because Whit continues to make strides in standing.  She has even started walking with more confidence while hanging on to someone with one hand.  (Credit goes to Whit's school teachers for working hard with Whitney on this.  Thanks!)

As with many medical tests, they take time to schedule and get the results.  So it'll probably be December before we can have the MRI taken.  We'll hopefully be able to do it in conjunction with a sedated ecocardiogram that we have scheduled already.

It'll be a few months but I'll post back with an update when we know more.  We want to make sure we remove any obstacles to Whitney being able to walk independently.  She watches her little brother, Liam, running around and wants it so badly.  We'll do all it takes so they can run and play together someday.

More Progress Standing

Melanie has been working Whitney really hard this summer. We want Whit to stand and walk on her own so badly. Liam makes it look so effortless and fun and Whit just craves more independence. Luckily the progress is coming, slowly. I shot a little video of her standing workout and you can see how confident she is on her feet now. The thing I missed when I took the video is that Whit will now take up to for or five steps, all on her own, to balance check herself as she stands. It's so exciting to see!

We're starting to notice more muscle developing in her legs and her stamina continues to improve. So at this rate it may take until she's eight or nine years old, but I don't care. I know she'll walk all by herself when the time is right. And it still makes me cheer inside when I see her trying.