Allow your body be limp while you are laying down to get some relaxation. Practice deep breathing techniques, meditation or yoga to relax and relieve back pain. This is a simple method to relax your back and other muscles and release any remaining tension.

Pain in the lower back is the second most common cause for doctor visits, as well as being the primary type of back pain. There are many small changes that you can make and many precautions that you can take to reduce and prevent back pain. Suffering some form of lower back pain may seem to be a foregone conclusion as one gets older, but it is logical to try and stop it before it happens.

Anyone suffering from back pain should give yoga a try. Yoga is a therapeutic and relaxing activity. This is a natural way to readjust any crookedness in your spine. In addition, it assists you in loosening any tight joints or muscles that you have, which causes your body to be more relaxed. It is not hard to find classes, as most gyms offer them.

Start with obvious remedies when you are dealing with back pain. Getting a few days of good rest is often helpful as well. While waiting for relief, take some anti-inflammatory medication, such as ibuprofen, acetaminophen, or naproxen. You could also use the old remedy of using heat or cold, or switching between them, to soothe your back.

It may be difficult to get an immediate doctor’s appointment for an acute back injury, but it’s still necessary to remain comfortable. You may get some relief from your back pain by lying on your back with a pillow under your knees. This minimizes the amount of strain placed on the tendons and muscles that run down the back and legs.

Try to disperse the weight you carry evenly. If you find yourself carrying things often, like schoolbooks or a handbag, use a backpack that will spread this weight over a wide surface area.

If you’re experiencing back pains, the first thing that you must do is to get good Therma-Care back wraps. These have been clinically proven to ease your pain for at least eight hours. Since that amount of time is fairly substantial, the item seems to be a good purchase.

You can cut back on the amount of pain you experience in your back by cutting caffeine out of your diet. Caffeine can trigger spasms and it may cause muscles inflammation if you already have muscle damage. Cutting back on sodas, coffee and tea will curb your caffeine consumption and relieve your back pain.

Give These Tricks A Try If You Are Facing Back Pain There are various back pain medications, both prescription and over-the-counter. Before you make any decisions, consult with your doctor. Over-the-counter medication is sometimes enough to treat back pain. If it isn’t, it may be necessary to use prescription strength medications.

It might be common, but that doesn’t mean back pain isn’t serious. By not managing your back pain, you run the risk of severe damage that can affect your whole life. Because it’s hard to overcome back pain, the best thing you can do is take precautions to prevent it from occurring. If you start to feel any pain in your back, it’s imperative that you know how to take care of it. These suggestions will assist your quest to treat and prevent back pain. Good Advice On How To Deal With Back Pain
Suffering From Back Pain? Tips For Fighting Back

Do you have back pain? Don’t twist around like a maniac when working around the house! Be careful as you go about your daily activities as twisting your spine, such as when cleaning, can injure your back. When participating in sports, take a rest if there is pain or tightness in your back.

Back surgery might be a consideration if your back pain is severe. Surgery can be an effective last resort if no other treatment works for your pain. Sometimes surgery is the only thing you can do for injuries that can cause pain.

Apply heat to your back when it is hurting. The heat eases the pain and increases the amount of blood and oxygen flowing to the injured areas. You will be able to use a heating pad when you sit or lay down.

It is estimated that two thirds of people will suffer with a serious episode of back pain at least once in their life. Lots of people think that back pain can be traced to a single injury or incident. Quite often, only the latest in a sequence of events contribute to back pain.

Don’t Let Back Pain Dominate Your Life Since we spend a lot of time in a car each day, back pain is often caused by sitting in the car. Adjust the seat properly, where you can sit comfortably, but not so much that it causes you to develop bad posture or slack off.

A good massage can work wonders to keep back pain from developing into a chronic problem. We tend to hold much of the stress we experience everyday in our backs, causing pain over time. A great massage can relax your back, help it heal and become a worthwhile tool to help maintain your longer-term back fitness and health.

If you are experiencing back pain, stressing out about it will only make it worse. Try and relax so as not to worsen any discomfort you already feel, and prevent muscle spasms. Try to rest and use heat on your back for easing your pain.

Dealing With The Effects Of Back Pain Consider purchasing Therma-Care back wraps if you are having difficulty with back pain. They are proven to help reduce back pain for about eight hours. If they give you eight pain-free hours, it’s well worth it.

Try to maintain good posture and avoid slouching when performing activities such as vacuuming. If you are always bending over when you are vacuuming you will cause your back to hurt. Stand up straight and with good posture pushing the vacuum with your legs and not your back so as to avoid causing pain.

Standing up for long periods of time can cause significant back pain. Prolonged standing places excessive strain on the lower back muscles. If you want to improve your back pain, you should switch between sitting and standing to keep your back okay.

Many people suffer from back pain. You should now be able to treat back pain, without medications and frequent doctor visits. Kick Back Pain To The Curb Forever

On Friday, Physical Therapy (PT) was moving Christopher from the bed to the wheelchair in his left-hip brace, when we all heard a ‘pop’. He immediately began screaming and crying. PT said it was more than likely a muscle going over the new titanium screws that was in his hip. Then, they tried to continue to move him and Christopher said he just couldn’t do it. The main therapist told me that he was scared and I said it may be so but I know my boy is in pain. I know my son and he is not faking. We continue to have some friendly banter and in the end I told her he wasn’t moving anymore today. Dr. Standard’s Physician Assistant Allison was close by and she immediately requested an in-room x-ray. Dr. Standard was in DC but he was notified of the situation. Allison came back to tell us she thought everything looked good but wanted Dr. Standard’s opinion first. Then, after Dr. Standard compared the x-ray with the OR x-rays; he knew we needed to go back to the OR.

Christopher went in at 10:45am on Saturday. Dr. Standard was waiting at the elevators for us and quickly started showing me the x-rays and what his game plan was going to be. He said he knew that Christopher had a femoral neck fracture but didn’t know how severe and that his hip was rotated 20 degrees. The night before Christopher kept saying my knee feels like it rotated. He was correct about everything. He knows his body. Dr. Standard had an A, B, C, D, E plan but knew he wouldn’t know which one until Christopher was asleep and he could manipulate the hip. He called us 20 minutes after arriving in the OR and said he needed to go back into the incision and dislocate his hip again to properly correct the fracture. He placed three titanium screws to reinforce the hip and removed the two screws in the troch (the part that connects the muscles) and repositioned them to provide even more reinforcement. He said the most crucial part, the femoral head, was still alive and that the entire femoral head was almost detached. The surgery took four hours and it was rough on Michael and I. We were prepared for the first surgery but this one took us by surprise and then add sleep deprivation and it equals worried parents. We prayed a lot and sent messages to all of our prayer warriors. We appreciate everyone that has prayed over Christopher and us. We definitely can feel those prayers.

Here’s a photo of Christopher’s new hip. Dr. Standard said it looks like a toolbox.

Saturday surgery – 3 more screws

Christopher is our hero!

Here is Dr. Standard’s handiwork. Christopher requested Woody the Woodpecker since he has mastered his laugh. Dr. Standard treats the kids to a doodle on their knee after major surgeries. You can definitely tell that Dr. Standard kept his promise and practiced this drawing.

Woody the Woodpecker

Rough Patch
Christopher was doing so well, then things started to go the other way. It started when the physical therapists moved him on Thursday and his epidural started to leak. Anesthesia was called and they quickly resolved the issue and increase his dosage of meds. He will have the epidural for four days. Then, today, physical therapy put on his brace and then tried to move him to the recliner. As they were moving him, a loud pop sound came from his hip and then Christopher was screaming in pain. He has five screws in his hips and we are hoping it was just a muscle or tendon rolling over those screws. They quickly took an xray in our room and Dr. Standard’s physician assistant thought all looked well. Then, Dr. Standard reviewed today’s x-ray with the x-rays from the surgery and he thought he might see a hairline fracture.

Solution
Christopher will go back to the OR tomorrow even though it is a Saturday. Dr. Standard wants to double-check the hip and take an x-ray with the OR xray and manipulate Christopher’s hip while he is asleep. If a fracture is present, he will place a couple of screws to hold everything in place. Christopher was concerned it would be the external fixator but he was assured it was only screws. I’ll keep everyone posted on tomorrow’s surgery. I have no idea when we are scheduled. I just know he cannot eat or drink past midnight. Please continue to pray for his complete healing.

Christopher is ready!

Christopher and Rachael

We have had so many people stop by to see Christopher and offer words of encouragement before we left. Mr. Dominic, which I blogged about before, stopped by to see Christopher before we flew to Baltimore. He has experienced four hip surgeries and knows what Christopher is going through. He wrote Christopher a long letter that was so endearing. He prayed over Christopher and really lifted his spirits. Then, his boy scout troop sent a goodie basket with a stone that each troop member had touch so he could take of part of them with him to Baltimore. It brought a tear to my eye. We are blessed beyond our wildest dreams. Right before we left, Laura Rogers dropped off a huge goodie bag with games, homemade Valentine cards and Christopher’s favorite girl scout cookies.

Here is the link to send Christopher an electronic greeting card while in the hospital – http://www.lifebridgehealth.org/Sinai/SinaiHospitalPatientECards.aspx. You can put ‘PEDS’ as the room number.

Below is the letter that Christopher’s little Kindergartener brother asked my husband to type before we left. I think it sums up how we all feel.

Christopher’s Photo for Student Council

Shock and Awe (10/18)

I spoke too soon about Christopher doing well. His beloved Grandfather just joined the angels in Heaven and immediately after the service – Christopher’s left hip froze (just like July 4th 2010). He immediately started crying and had to be helped to a pew. On the way home he said, ‘This pain is different. I really messed it up this time.’ We sent his x-rays to Dr. Standard via text and his response was ‘Christopher will need intervention because he has a double hump. It will definitely be hip surgery’. As you can imagine, we’re crushed but trying to put on a strong face for Christopher. We have done everything right. Our daily regiment is more than when he was in sports – swim team, physical therapy and stretching. Plus, throw Boy Scouts and homework in there and we have no time for anything. None of us complain, we just made it our lifestyle. Perthes is going to do what Perthes is going to do. After 4 1/2 years involvement on the left hip, it is possibly coming down to hip surgery to save Christopher’s hips so they will last past his teens.

Baltimore Bound

We go this Wednesday to Baltimore, MD to see our Dr. Standard and truly know what we are up against. We’ll be on ‘Standard’ time on Thursday. I dread this appointment but I cannot put my head in the sand. It’s time to get our game face on and go tackle perthes once more.

Our East Coast Friends

We hope and pray our East Coast friends stay safe and healthy. That super storm affected so many. Our thoughts and prayers are with you.

Christopher in Baltimore in April

The Not So Good News

The left hip is an entirely different story and makes my nose crinkle. It’s the questionable hip. It has grown back but it’s far from round but we knew it wouldn’t be perfect. It’s very flat and has an outside growth that will need to be addressed in the future. We’ll know in four to five years if he’ll need a head splitting osteseotomy which Dr. Standard says he is a perfect candidate for. The hip socket (or actbellum) has stretched out and Dr. S said he was surprised Christopher’s hip was still contained. If we ever lose containment or range of motion, then the gizmo (aka external fixator) will be needed. It just breaks my heart to think we’ll have to endure more surgeries and we won’t know the true outcome until his teens. I want this all to be over but I realize it will never really be over. I guess that is true of any disease. I hope we are alive the day they find the cause and cure for this debilitating condition.

Never Look Back
I came across Christopher’s first x-rays over the weekend and it just broke my heart. If we would have found Dr. Standard from the very beginning, we might have saved both hips. You can beat yourself up with the ‘what if’s’. I know it wasn’t supposed to happen and this is all in God’s timing. I know we are where we are supposed to be; I was just hoping to forget about it for a while. Perthes may have slowed Christopher down but it didn’t break him. He is a stronger, smarter young man because of it. He wants to be an pediatric orthopedic surgeon when he grows up. It will be interesting to see if that come to fruition in the future.

Team Perthes Awareness
Christopher has joined the Perthes Team Awareness again with the Save-the-Limb. He is sporting the new RIAO shirt for this year’s bike race in the photo above.

Also looking back, we have watched our son grow wiser beyond his years. He has always been compassionate and loving but others are seeing him mature.  Family members that hadn’t seen him in a while were surprised by his maturity.

We recently told Christopher’s story in the Katy Magazine.  They didn’t completely get it right.  I said ‘Christopher was our walking miracle’ not Dr. Standard’s but at least his story is told.  They also make it sound like he is healed and I wished that were true.  Maybe next year…

Here’s to a pain free year for all of our Perthes friends and a very Happy New Year!

Photo Shoot from Katy Magazine

Blasting Away

Blastoff - Christopher is in the 2nd row, first kid

Save-A-Limb

CMAC at Save-A-Limb Ride - 10-22-11

Dr. Standard said…
For the first time, Christopher heard what I already knew. We were inches away from the fixator. It could still be our future if we don’t keep the range of motion. It was quite a motivator to keep those stretches going even though we are all tired of them. Eleven months is a long time to keep up such a regimen. (December 30 is our one-year anniversary of knowing that we had perthes even though we have been dealing with it since June 2009).

Dr. Standard said Christopher’s left hip is still showing bone regrowth and the right is still frozen in time. He also said Christopher can start to lightly jump but he still has to wear the brace at night. That was Christopher’s breaking point. He really wants to be rid of the Scottish Rite braces but its not time yet (at least he only wears them at night). Dr. Standard also released him to modified P.E. Christopher fell the first day but luckily fell on his hands. He told me not to worry because it was good to feel normal again.

Christopher has made sweet lemonade out of sour lemons this year. We couldn’t be more proud of him. He is making straight A’s and has channeled his energy into being elected for Student Council, WISE, FISH club, swim and boy scouts. He is busier now than ever before. A teacher’s son met Christopher the other day at WISE and said he was impressed with Christopher’s ‘can-do’ attitude. He said he knew Christopher was in pain but that nothing was going to stop him. I know he was right, Christopher will never give up!

Mr. Dominic
We were at the ‘Meet and Greet’ for Christopher’s school last Wednesday night when a gentlemen walks over and said ‘there’s my hero’. Michael and I looked at him and were trying to figure out how he knew Christopher. Well, it was Mr. Dominic!!! The wonderful man that wrote the note to Christopher in the last posting. I couldn’t keep my emotions in check. Tears were streaming down my face as Mr. Dominic told Michael and I that Christopher’s name is on his car visor and he prays for him every time he looks up at his name. It turns out that we already knew Dominic’s daughter and Christopher went to pre-school with her and will now have her in his class. Funny how life plays out sometimes.

Save-A-Limb Ride (October 22, 2011)
Our next (in person) visit with Dr. S is on October 17th. We purposely planned around the Save-A-Limb bike ride.

If you would like to help Christopher make a difference, please make a donation in honor of him for his team ‘Perthes Awareness’ at the Save-A-Limb ride.

Here’s a letter from a Sunday School teacher at Kingsland Baptist Church that had only met Christopher for one hour. I found it in our car as we were getting ready for vacation. Click the image below to read it.

The Note Mr. Dominic wrote to Christopher

A Case of Hip pain in a Young Runner: Perthes Disease

here is a nice little short video of a young girl with a healed Perthe’s Disease (full name, Legg-Calve-Perthes Disease) that came to see us a few years ago with right hip pain.  After an examination and a very brief treatment stint films were obtained and found an early stage Perthe’s Hip.  Early diagnosis is always important in this disorder that affects the vascularity of the head of the femur. Failure to make an early diagnosis is a disaster which leads to deformity and permanent disability for the patient.  Perthe’s affects mostly male boys under the age of 10. There is really no clear etiology but many studies point to a period of increased pressure within the joint from an inflammatory process. A term “Transient Synovitis” has been labeled by some.  In this case, the disorder was caught in its first stage and the hip revascularized, did not collapse and it is doing well.  Collapse is the most devastating outcome of this disease process, it is why you do not mess around with children with unresolving hip pain, obtain imaging early.  The main problem, as is seen here, is that she cannot get to her gluteal muscles to stablize the hip in the frontal plane.  Here you see a classic Trendelenberg Sign when she steps onto the right leg. 

When she steps onto the left hip the hip,knee and foot are well aligned in the frontal plane and the right hemipelvis rises above the left hip joint line.  Comparatively, when she steps on the right, there is a significant lateral pelvic and body mass shift beyond a line drawn up from the foot-knee line.  Consequently the left hip drops and she looks like she has a short right leg.  Measurements (as unreliable as they are)  do not show a leg length discrepancy.  However, this type of mechanical behavior can put undue stress on a healing femoral head.  Using a sole lift to help regain pelvic leveling during gait help maintain balanced femoral head pressures and cartilage coverage during the last stages of joint formation in this adolescent.  The problem is that there will be dependency on the lift so regular daily exercises with guaranteed compliance is imperative.  She must regain use of the glute in gait and stance or this hip will be a problem in later years, guaranteed.  So, this is a difficult case.  It is not for the faint of heart.  Bottom line, do not mess with kids with hip pain for long without imaging to rule out terrible problems like this.  There are so many gait problems that will ensue if the gluteal stability is not regained.  To name just a few, the right foot will always be supinated and this means risk for bunions (see last weeks Dr. Ivo video on bunions and the adductor hallucis muscle) and other disorders that are caused by an unanchored first metatarsal.  Additionally, the knee can degenerate the lateral compartment quickly not to mention the plethora of muscular problems (low back pain, knee pain etc) and strategies (ie. pelvic distortion patterns) that will ensue from such a gait.  There is so much more to Perthes Disease than we have mentioned here, but this is not the venue for such complicated topics.  The important thing is to beware of systemic problems that can compromise the integrity of the neuromusculoskeletal system that can have short and long term effects on one’s gait. Here is a link to some more info on Perthes Disease …… but even this is scant info (http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002244/)….. make sure you do your reading if you are in the clinical world and see young patients. 

It is not always just about muscles and shoes and orthotics. You have to always be on your toes (no pun intended).

we are…….. so much more…….. than just Gait Guys.

The left side has 100% femoral head involvement with total collapse.

We visited Dr. Standard on June 13th, 2011.  We received really good news.  Christopher’s left hip has bone regrowth!!!  It’s not pretty by any stretch of imagine but we have the white fluff.   He said the right side has been frozen in time. Dr. Standard also said that he was amazed at Christopher’s range of motion on the left hip.  With most kids that have a 100% femoral head involvement and complete collapse, he is going in for surgery due to poor range of motion but because Christopher’s range of motion is so great, we have escaped that so far.  If things ever change, then we’ll know the alternative.  We are just grateful to have options.  Our local doctors just gave us doom and gloom and no sunny outlook. Also, Dr. Standard said he could run a little.  All Christopher heard was ‘he can run’!  He ran out of the doctor’s office with the biggest smile on his face.

Three Steps Back
We were doing so well.  Then, Christopher fell at Vacation Bible School this past week.  He was having such a good time seeing all of his friends.  He hasn’t been in a school environment for more than two months now.  He wasn’t running when he fell – he was fast walking.  He wasn’t wearing flip flops – he was in tennis shoes.  He didn’t fall directly on his hip – he fell on his knees.  However, he fell REALLY hard on concrete.  He could barely walk.  We immediately went for x-rays and talked to Dr. Standard via the web chat.  He looked over Christopher’s x-rays but he didn’t break anything.  He is on limited activity for the next three days or so and Motrin.  I’m so grateful that he takes the time for those web chats.  They are invaluable to his current patients, potential patients and families that are just trying to figure everything out.

Save-A-Limb Ride (October 22, 2011)
Our next (in person) visit with Dr. S is on October 17th.  We purposely planned around the Save-A-Limb bike ride.  We have our rooms reserved at the Hackerman Patz house and will see our dear friends the Hay, Foote, Triani, Dierkhising, Garman, Hagan, Knezic, Apodoca, Schaeffer, Haycraft and many more great families that we have only met via email or FaceBook on this perthes journey (if I left out a name, I apologize in advance).

If you would like to help Christopher make a difference, please make a donation in honor of him for his team ‘Perthes Awareness’ at the Save-A-Limb ride.  To help bring awareness to Perthes, Earl Cole is asking anyone with a Twitter account to follow him so we can spread the word.

Tanner and Christopher

We are back in Baltimore for a post-op appointment tomorrow – June 13th.  We are late for our post-op but better late than never.  Christopher and I flew in today and it was a typical Baltimore trip.  We sat for 35 minutes on the Tarmac and then we arrived to Baltimore with tornadoes swirling around the area.  On top of that our GPS (aka squirrel) was trying to navigate from Texas and we were lost the first part of the trip.  Our dear friends Stacey, Harrison, Sam and Addison were in the basement taking cover when we arrived.

Famous Dave’s

Tanner, Rachel and Christopher

We went to dinner with the Foote and Hay families and had a good time.  Christopher and Tanner are like two peas in a pod.  They talk their own language and understand each other.  They spent most of the night playing on their iPods.  They did take a photo with Rachel Foote but they wouldn’t pose with her.  One day those boys are going to regret that.

Walking Our Way
Christopher is doing ‘ok’.  He is still not back to where he was after the first surgery. Lately, he has been experiencing hip freeze (that’s what I call it).  He’ll be walking and then his hip will pop and freeze up on him resulting in tripping.  If I think back, it happened before the surgeries too.  At first I was concerned but I suspect it is typically for most kids experiencing perthes.  He has been in pain more than usual lately.  That’s the part I cannot stand.  If we hear the white fluff is on the left, we’ll be thrilled.  We knew this journey was not going to be a fast one.  It’s just time to walk our way.

Who would have thought that a 10 year old boy will struggle with something as simple as walking?  If Christopher perseveres through the pain today; he will pay for it tomorrow.  He asked me last week when he would run again and I honestly couldn’t look him in the eye and give him a straight answer.  I keep telling him this is just temporary, but is it?  Time will tell.  I believe we have done everything humanly possible to give him a brighter tomorrow.

Summer Around the Corner
Christopher is still meeting with the home bound teacher weekly.  We survived!!!  It was a full-time job but now it is so much more manageable.  I realized that we were working from behind.  It is just like pain management.  You have to stay in front of it.  Once you are behind it; it’s hard to balance it.

One More Trip
We have rearranged our Baltimore trip to June 13th.  We’ll fly in on Sunday and leave on Monday after the appointment.  We’ll see our dear friends for a day; so we are happy.  I’m nervous about this appointment more than others.  Christopher has done well but hasn’t completely rebound from the surgery as quickly as last time.  If Dr. Standard says he sees the white fluff; then we’ll be relieved.  He just commented after the last surgery that the left hip is the worst and it may need ‘the works’.  We’ll cross that bridge when we get there.

More Hope
I stumbled across this story about using bone stem cell grafting as a replacement for hip surgeries in the UK.  This man was 35 years old and had the same procedure as Christopher.  I’m encouraged to see it worked for him.  Surely it’s going to be successful in all of the perthes kids that have gone through this surgery. Read the article.

Christopher loves being in the water

This week started out great.  Christopher was finally off the painkillers and having minimal pain.  Everyday he improved in standing, not walking on his tip toes and his limp was getting better.  The difference this time is we had pool therapy instead of land.   However, we started land therapy yesterday and guess what?  He’s in a lot of pain.  If you know Christopher, even on his worst day, his pain level is at a 2.  Well, last night and today it is at a 5.   It’s breaks our heart to see him like this.

Scars Signify Strength
I know many perthes kids have many scars due to multiple surgeries.  I was looking at Christopher’s large quarter size scars from the bone marrow sites and I wonder if they will ever fade.  I’m glad he is a boy because more than likely folks won’t see them unless he is sporting a speedo.  He has six scars from the two surgeries and I know ever time he sees them; he will think of how far he has come in this fight against perthes.

Making Smart Decisions
Christopher and I talked about him participating in the neighborhood swim team.  We both decided he is not ready.  I’m not worried about him; I worried about other swimmers.  What if someone accidentally knocked him down on the slippery pool surface?  What if someone accidentally dived into him and he hits the pool bottom really hard?  With everything he has gone through, it’s not a chance that Christopher is willing to take.  He wants to continue with his swimming program and complete it.  Then, possibly get on the year round swim team.  He amazes us everyday with his maturity and smart thinking.

Nana and Papa Nick sent balloons

We made it safely home and it was a smoother ride for Christopher. The first surgery helped us be prepared and we knew what to expect. The only thing we didn’t anticipate was how weak and wobbly he would be this time around. It makes sense; he doesn’t have a good hip to stand on. This time we have a wheelchair and it’s a good thing. We managed the last month without one, but making any trips out the home were done with the motorized cart from the store. Have you ever seen a 10 year old on a motorized cart? There is a reason you have to wait until 16 to receive a driver’s license.

Making Memories and Friends
Perthes may stink, but the folks you meet along the way will touch your heart forever. Our last night at the HP house, we met the Knezic, Dierkisling and Abraham families and many other families that I only know the child’s name. It’s amazing how overnight we gained a family — the Perthes family. Where else can you meet folks going through the same thing your family is experiencing? It’s great for our kids and wonderful for the parents. It’s terrific to have a sounding board to express your fears and concerns. Each one of us have each others’ back and that is rare to find even in normal day-to-day life.

Some of the children we met at the HP house during the first surgery in March; they are still there. It’s amazing how these children are so resilient and have a great attitude. I saw this ten years ago when I worked at a children’s hospital. This experience will forever change Christopher, his brother and us.

Cleared for Swimming
Christopher will be on a swim team this summer.  Dr. Standard thought it was an excellent idea.  I’m still skeptical of how this will all work.  Practices start this week and he cannot walk very far and has a crazy penguin limp walk.  I know it will all work out.  Last night was a very rough night with a lot of tears and pain.  We are looking forward to seeing the other side of Perthes; where we are running and have our childhood back.

I Won’t Let Go
I heard this song and it captures the struggles of going through Perthes.  As parents, we want to protect our children and we’ll never let go.  It’s a physical and emotional battle. I find it hard to listen without shedding a tear or two.

It hurts my heart
To see you cry
I know it’s dark
This part of life
Oh it finds us all
And we’re too small
To stop the rain
Oh but when it rains

I will stand by you
I will help you through
When you’ve done all you can do
And you can’t cope
I will dry your eyes
I will fight your fight
I will hold you tight

Christopher at Hertz rental car

Christopher and I finally made it to Baltimore yesterday evening. It was an exhausting day to say the least. Our flight was delayed twice due to inclement weather. We finally arrived in Baltimore around 7 pm (we should have arrived around 3:30pm).  Christopher gave me a good laugh, though.  We had WiFi on the plane and he FaceTimed a friend. The only problem with this is that Christopher talks louder when FaceTiming on the iPod, so he was practically yelling due to the airplane noise. Thank goodness the lady sitting next to us was a good sport. He gave us a really good chuckle.

My friend Stacey later informed me that a tornado was touching down close to us  just as we were picking up the rental car. I feel for the folks in Alabama with all of the devastation. That weather moved into Baltimore, so it was a very gloomy and exciting day.

The White Fluff
We met with Dr. Standard today for our post-op/pre-op. Our wait time was longer than usual – four hours. However, we received the best news. The right hip definitely has the white fluff and he said we may have saved Christopher’s hip from collapsing at all.  Wouldn’t that be great?!  It’s too late for the left, but hopefully with tomorrow’s bone stem graft and core decompression we can stop Perthes in its tracks and reverse the collapsing.

We’re Ready
Our surgery is scheduled for 8 am. Christopher is second in line. Michael arrived tonight around 8 pm due to the inclement weather; I feel better knowing that I have backup. I will post the electronic hospital card link tomorrow once we are assigned a room. Christopher really appreciated all the cards last time. It brightened his day. Looking forward to a new future and putting this Perthes behind us. Christopher pointed out that we have been to Baltimore every month since February. Wow! He’s absolutely right and our pocketbook feels it. Until tomorrow…

Realizations and Guilt
I realized something today – over the past year when Christopher and I were shopping, he’d lag behind. I would quickly tell him to quit lallygagging and catch-up. It happened a lot. I didn’t realize it was this darn disease holding him back. He was doing the best he could to catch up. I apologized to him today and he said, ‘Mom, how did any of us know?’ His teacher came by a couple of weeks ago and said that she had watched Christopher slide down hill over the last few months. She said he never once complained and she could tell he was in pain. He still doesn’t complain to this day. I’m thankful that I am close with him, that I can see it in his eyes before he even tells me he is hurting.

Stretching is easy holding this sweetheart

Cutie Pie
Christopher hasn’t felt like stretching much lately because he overdid it at physical therapy on Thursday. He still cannot find a happy medium between too much and too little. In true Christopher form, it’s all or nothing, but he is working on that. We perform stretches twice a day and Dr. Standard says he will be stretching until his senior prom.

He had some extra encouragement today; Trixie stayed with him during all of his stretches. She’s such a cutie pie and Christopher loves her more than anything. He will miss her next week, and I have to admit, so will I.

Grateful Beyond Words
We are four days away from leaving Baltimore for our post-op appointment. Christopher will have home bound schooling the morning of Wednesday, April 27th and then we will jet out of town. Our post-op appointment is on Thursday, April 28th. I am so grateful to work for such an amazing company. I truly love what I do and that is such a blessing. All of us work remotely and if I didn’t have this job, I’m pretty sure I would be unemployed or taking family medical leave. Christopher is home with me 24/7 every day of the week. Where else can you work and take care of your sick child? My co-workers are amazing and the health insurance is great.

Our health insurance changes May 1^st and Joel (President of my company) made sure we are covered. I had a moment of panic this week and Joel eased my mind and had the insurance folks call me that evening to explain the new benefits. I can never express my gratitude and thanks to my co-workers. I will never be able to repay  their kindness and generosity, but I’m sure going to try.

The Results
Christopher had X-rays locally this last Thursday. I’m not a doctor, but when I viewed them I thought the right hip looked like it had regrowth. Compared to the previous X-rays, the hole in his hip is looking white. I hope this is the white fluff that Dr. Standard wants to see. We sent the X-rays to him electronically; he will review when he gets back from vacation on Tuesday. One of his fellows said it looked promising, so we are hopeful this means the surgery was a success. We are trying not to get our hopes up until we hear from the doctor, but we are sure praying for great results. The right hip femoral head is looking nice and round.

Helpful Tips
I found out today that if you book a flight with Southwest you can have a one-time medical emergency change. When I booked our flights to Baltimore more than a month ago, I didn’t know we had the possibility of getting the left hip surgery performed.

This time I extended our rental car to a week because it’s easier to reduce the days than to add more. I discovered how expensive it is to add days on our last trip. So far, our journey to Baltimore has cost us a pretty penny. It is only money and what is most important is Christopher’s health. I know now that you should schedule your flights and rental cars longer than the days you need and reduce if necessary. It will cost less that way. If Dr. Standard says we are a go, then surgery is tentatively scheduled for Friday, April 29th. We are ready.

Reality Hurts
I had a slight breakdown a couple of weeks ago when I realized that we are messing with his bones. I know we are on the correct path, but sometimes it overwhelms me if I think about it too long. I worry about one leg being shorter than the other, which is typical for Perthes. So far, we are even in both legs. I noticed the other day at physical therapy that one knee is slightly higher than the other. I hope it is just me being very sensitive to our current situation. I had a good cry that day and I have moved on. At least I don’t cry every day like I did in the beginning. It’s a process that I know other Perthes parents go through too. Our children are not dying, but their childhood is being stolen from them and it’s hard to watch. We’re hoping and praying that by next Easter that Christopher will be hopping along with Peter Cottontail all the way down the bunny trail.  Hippety, Hippty Hop – Happy Easter Everyone!

It’s been a rough week and it just began. Collin had strep a couple of weeks ago and gave his brother a present over the weekend. Christopher knew he didn’t feel well so I quickly took him to the after-hours pediatric care yesterday. It’s a confirmed case of strep. By the time we got home, he couldn’t even lift his legs because he was so sore and stiff. Michael had to lift him out of the car. It was a wake-up call for us. We’ve seen Christopher getting better every day, but now we see how quickly this disease can bring you to a halt. It shouldn’t be this way, but we are going to face it straight on.

Christopher’s right hip (the one with the bone stem graft and core decompression) is aching most days. I asked Christopher if it was the same pain before the surgery and he says it’s definitely not. I have to believe it is new bone growth and we are going to see outstanding results.

We finally figured out home bound schooling. I think I was too sick last week to think properly. I have Christopher’s work organized on a calendar and we are now caught up. It felt overwhelming at first, but we tackled it like anything else.

“Nothing is impossible to a willing heart.” It’s our mantra for this week. Happy Easter everyone!

Dr. Standard and Christopher

We are two and a half weeks post-op. Christopher is FINALLY moving well and not on painkillers! He is not running a marathon but he can walk 50 feet now. We had the surgery but now what? I have to keep reminding myself (and the whole family) that he was in a lot of pain before the surgery and could barely walk. Now is the time of healing. Our physical therapy is going well and we are back to everyday sessions. I cut them back last week to three sessions because Christopher could barely move. As Dr. Standard would say ‘slow and steady’ — that’s where we are today.

Facts of Life

Some things in life will scare you and I have found one. Homebound schooling…We started this Monday and it’s another full-time job! I don’t know what I was expecting but it is a wake-up call for sure. I’m just thankful that Christopher knows most of the answers because I feel like I’m going back to school. For those that know me well, I am a book worm and like to make good grades but elementary is more advanced these days. Michael took over the homework duties last night because I had the worst stomach flu of my life. You just cannot work or function with a 103 fever.

The Fun Stuff

Trixie

We added a new member to the family, Ms. Trixie S. Christopher calls her Trixie ‘Spaz.’ She’s 9 weeks old (schnauzer) and already melting the hearts of all of the males in the house. She is also Christopher’s post-surgery puppy that, for whatever reason, we agreed too. I guess I finally got my girl! Every toy, bed, blanket is PINK. I think it is good for Christopher to have a reason to want get up and move. He has to take her out every 30 to 60 minutes because she is not potty-trained. Plus, she keeps him company all day while I work from home and provides a constant heating pad while she sleeps with him. She’s just so darn cute!!!

Just Breathe

Our trip to Baltimore is all set now. We leave April 27th and we are praying for really, really good results. It sounds like Dr. Standard’s surgery schedule is already into May. We were hoping to get the other hip done while in Baltimore to save on the expenses of going back and forth. We’ll have to wait and see. This time I can say ‘wait and see’ and not be disgusted of the connotation of it. (The first time we heard this was in March 2010 when Christopher was misdiagnosed). This time ‘wait and see’ represents a hope for a much brighter future because we didn’t sit and wait to see what could have happened.

Random Thoughts from Christopher

Christopher – Mom, you know the one good thing about getting Perthes is?

Me – No, what?

Christopher – I can be the first in line at Disney World for all of the rides.

Me – I guess a trip to Disney is in order once the doctor clears it.

For those of you that know Christopher, he didn’t move at all this week, which is not like him. He went from the recliner to the bathroom to bed. At first we thought it was because he was scared to move but quickly realized it was due to pain. We really thought Christopher would rebound like he always does but we were shocked. His spirits finally returned on Friday. He was excited to prank his little brother and Dad for April Fools. He sat in a chair so he could tape up a door. It must be a boy thing.

I was really frustrated in the beginning of the week. I worked so hard to get us to Baltimore that I didn’t stop to think about how it would be once we got back home. I knew we would have physical therapy but I didn’t realize how much red tape is involved with our great insurance. It was just one more hurdle to jump but I have to say I was drained.

I was flustered because not one single pediatric therapist in the area knew what Legg-Calve Perthes Disease was and I don’t know why I was so surprised. I guess I expected something different. I also didn’t know how to get Christopher into the car safely. I was so scared he would fall, then it would be game over. We decided to go with the closest facility since we’ll be in PT every day for a month. We couldn’t see driving 30 minutes one-way five days a week. Christopher’s first session went well and the painkillers helped. He was in more pain the next day but that’s to be expected. Hopefully we’ll find the right match soon.

We’re looking forward to next week and the improvements it will bring. Christopher and I are a little bummed. Today is his school fundraiser and we have never missed it in four years. It has games, rock climbing walls, jump houses, etc. It gets really crowded and he cannot walk that far yet. I had to cancel my work retreat trip to Baltimore and I would have left this Monday. I know, one more trip to Baltimore. I will be sad to not see my co-workers but I would have been a complete basket case if I had gone. I will join via a teleconference line instead.

We return to Baltimore in three weeks for our post-op appointment. I sure hope we see the white fluff on the X-ray that means the bone is growing back!

Christopher's Ticket

We said our good-byes at the HP house around 9:30 am. Christopher was feeling nauseous and we had barely driven five miles. Alice bought him a Sierra Mist and gave us a green plastic container, then another mom from Indiana gave us some saltines for the ride to the airport. I need to find out her name and thank her properly. We made it through security without a hitch and Christopher said he felt a lot better. We had a good laugh because Christopher’s ticket said he was ‘Christ McCloskey’. After all, it was Sunday.

As I was buying him another sprite for the road, Michael heard the announcement that our flight was boarding. We were worried that we wouldn’t get a decent seat on Southwest because there are no assigned seats. We were the 4th group to be pushed down the jet-way with a wheelchair and we got the first three seats on the right. What a blessing! With Christopher’s braces, he needed to stretch out to be comfortable. I noticed as we started to taxi that he was starting to look anxious. I looked over again and he was praying. As the plane lifted off the ground, Christopher began to hurl. Our Southwest crew were professionals. They quickly jumped into action and helped with cold compresses and a trash bag. That green container saved us from a more unpleasant experience. Our direct flight should have been three hours, but due to storms in Alabama it was three hours and 45 minutes. We finally made it on the ground and made it to our car and then we drove the 45 minutes home.

After we got home, it was time for more pain meds because Christopher was beginning to hurt again. He slept well last night but I still woke him at 2:00 am to administer more pain meds. We cannot afford to get behind the pain again. He feels like a king because he is sleeping in the downstairs master bedroom. However, Michael and I had to remove the bed frame because we cannot have Christopher stepping into bed. It’s the little things that make a difference. If your bed is too tall, lower it by putting the box springs and mattresses on the floor. Never travel the day after you are discharged from the hospital, you may regret it.

I plan to blog soon for my fellow Perthes families about the ‘Things You Need to Know.’ We have learned so many valuable tips along the way and I know others have more to share. I think it’s time to compile a checklist!

Jim was diagnosed with this rare disease when he was five, and since then he was underwent some extensive operations, but finally in 2005 he was given the clear and reassured he could be as active as he wanted and that he would not encounter any problems till much later in life. With that being said he joined the track team for Resurrection of Our Lord in 8th grade. He placed 1st in the city for the Philadelphia and 8th in the state for the Penn Relays along with other high placements in other relays. Jim is a Varsity wrestler for Judge; he works at it year round. He loved attending wrestling camps to improve himself, because he wanted to be the best. Jim received “Best Novice Wrestler” his freshman year and despite everything he has been through Jim has grown into an amazing young man who works hard at everything and gives his all to anything he puts his mind to. He is an Honor Student and has ranked 88 in a class of 278.

Presently the doctor told him that he can no longer wrestle or do his daily routine. Jim needs to undergo a major operation to restructure and rebuild his hip. He is no longer allowed to bear weight and must use crutches or a wheelchair to get around, and attends physical therapy three times a week. After his surgery it will take Jim three months before he can walk again and nine months before he will be rehabilitated. His mother Stephanie recently lost her job due to the economy and this is going to make the emotional struggle over the next year also a financial struggle. Many handicap modifications need to be made to the home.

If you could help in any way it would be greatly appreciated. We are asking for any help you can offer by donating gift certificates for items, actual items for baskets or to raffle independently or by making a monetary donation to help the Family. In appreciation, a complete list of donors will be printed in our program to encourage our patrons to support your business. If you would like to mail a gift to our attention it would be very much appreciated.

You can mail donated items to David Burke, c/o The James Burke Benefit Fund, 3224 Wellington Street, Philadelphia, PA 19149. Tax id is 27-5160783

If you wish to make a monetary donation, you can mail donations to:
James Burke Benefit Fund, c/o Wachovia Bank, Attention: Robert Carr
6420 Frankford Avenue
Philadelphia, PA 19135

To purchase tickets to the benefit please email the jimburkebenefit@hotmail.com The Benefit will be held on Saturday, May 14th, 2011 from 8 p.m. to 12 a.m. This event will take place at Daly’s Irish Pub at 4201-4211 Comly Street, Philadelphia, Pennsylvania 19135. Tickets will be $30.00 in advance and $35.00 at the door.

Thanking you in advance for your generosity.
The Benefit for Jim Burke Committee
Remember “It’s Hip to Help”
View more details on facebook at:
https://www.facebook.com/event.php?eid=203946882953186  

Kim Schreiner, ePRO, SFR, Realtor
RE/MAX Affiliates, NE
The #1 RE/MAX Office in the City of Philadelphia
Office: 215.992.1726
Cell: 215.510.2149