PT – beatingcowdens

Playing in Pain

Published on April 27, 2014April 27, 2014 by beatingcowdens3 Comments

We missed church again today. Not because we overslept. Nope. We were up with plenty of time to arrive at the Urgi Center and take our typical seats, waiting in a crowded room. If I had my copays back each year, I think they would exceed my tax return. Which is no great shakes anyway, especially with the whole identity theft mess. But, I digress…

Yesterday was a CYO swim meet. It started poorly because the bungee on her prescription goggles snapped in my hand. And they don’t get to warm up before a CYO meet, so there was no way to check and see if the new cord set the goggles right. So, she want back to her old goggles. Guaranteed functionality – sacrificing vision.

She swam. Hard and as fast as she could. She maintained her time during her first 25 fly in the relay, and took 2nd in the individual fly. She even swam up – with the 7th and 8th graders for a 50 back, and took 2nd there too. But it was during the last leg of the 200 free relay – the last lap of her 50 – her father and I looked at each other and knew – the right arm was hurt.

When I met her in the locker room her resolve was strong. My mission was clearly to help her get out as fast as she could. But the arm made it tough to change quickly. We got into the car before it all came out. She explained how the loss of the prescription goggles altered her judgement and she banged her arm into the diving board rails as she started – out of a lane she has never been in before.

We came home and iced the arm. We watched as the pain seemed to get worse. It went from the arm, up into the shoulder and into the neck. We are so used to there being pain. This child lives in constant pain. Some people must think all sorts of things, because something truly always hurts. But we have learned to put them aside, and, we have to triage. Last week she walked around for 5 days with a sprained ankle. Pain is so personal. Her nerve endings seem so easily excitable. Any injury seems to trigger an attack of “hyper healing” effort by her body. Even with 200 mg of MAINTENANCE Celebrex a day, she contends with joint pain and muscle spasms.

But she is an athlete, trapped in a body that is not quite sure how to handle her. So she presses on, and in between wanting to stick her in a bubble, I am awed by her raw determination. She wants to RUN, and KICK, and PLAY, and SWIM, and be a KID.

It’s not uncommon for her to spend the day after phys ed. recovering. Or a day or two after an athletic play date trying to work through the residual pain. I know that the other kids aren’t fighting their bodies like this, and it breaks my heart. But she is one determined young lady.

So last night we sent a text to our PT. To know Dr. Jill is to love her, as she is one of a select group of medical professionals who truly works for LOVE of the children she services. And when you are Meghan you have “PT for LIFE” and she’s been a patient there for about 4 years! And at 9PM last night we were in her living room – getting informal advice from a very skilled friend. If you’ve followed our story a while you know Dr. Jill is the impetus behind our Cowden’s diagnosis. She is the one who said, “something isn’t right here – too many unconnected pieces. Take her to genetics.” And I did. And the rest is our unfolding story.

Dr. Jill encouraged us to get a muscle relaxant for Meghan at Urgi Care today.

She's an absolute DREAM child - but really God knew what He was doing giving us ONE! — She’s an absolute DREAM child – but really God knew what He was doing giving us ONE!

So we did. We also got a note because the injury is to her right bicep and shoulder. Her dominant side. And there is no practice for her tomorrow. And no Phys. Ed. on Friday… and then there is the math test this week. And the gamble as to whether she will be able to write enough, fast enough… So much to think about.

The muscle relaxant calmed the shooting neck pain for a while, but its on its way back as I type.

We spent some time today talking about our fundraising hopes for Rare Disease Day 2015. We talked about my promising conversation with the head of the PTEN foundation – formed in December 2013. We talked about wanting to do something BIG for the PTEN foundation http://www.ptenfoundation.org/ and Global Genes Project. http://globalgenes.org/

I sometimes complain about being too busy, but she, like me, needs a positive project – even a simple play date – just something on the horizon to keep her focused.

She managed to type out the homework. We are getting ready for tomorrow and another crazy week.

We are babysitting my sister-in-law’s 12-year-old rottweiler. A 3 dog house. Cause a little more chaos creates more reason to keep on keeping on.

And I marvel that aside from some waning eyesight which I will have to address eventually – my body is stronger, and more able to endure stress than ever before. And I remember that it’s a good thing I stumbled upon nutritional cleansing when I did. The closet is full of the smallest clothes I have ever owned, and the ability to endure is not to be taken lightly.

So tonight we will get a real sense of how long the muscle relaxant helps. And tomorrow we will conquer the hurdles of having the dominant shoulder banged up during a school day.

I think I’ll get everything prepared nice and early. Just in case…

Reality – tough to swallow

Published on January 8, 2014 by beatingcowdens5 Comments

I am a huge fan of online shopping, and normally I anticipate my orders my counting the days till their arrival.

Except this one – not so much.

It was a purchase made out of necessity, not desire. It sat in my online shopping cart for 2 months before I hit send last night. It will arrive some day next week. It leaves me with mixed emotions.

Gratitude, that it is not a full time arrangement.

Anger that it has to be part of our lives at all.

Frustration for my energetic girl who would rather run, than walk. And would love to do both without pain and bone-crushing fatigue.

Anxiety, about all the ignorant folks who will pass judgment that I hope she doesn’t hear.

Guilt, that my child can walk and so many others can not.

My beautiful girl, as you know by now, has suffered with health issues her whole life. They have ranged in severity, but they have been consistently problematic. The diagnosis of Cowden’s Syndrome in the fall of 2011 answered some of the questions, but by no means all of them.

Research is scarce. The cancer risks associated with our PTEN mutation are real, and documented. But, the rest of the symptoms are shared though anecdotal conversation in small internet groups, worlds apart.

I can not know if, or to what extent, Cowden’s Syndrome explains the other maladies that have plagued her virtually since birth.

There are food sensitivities, on the narrowest list we have ever had she is gluten, dairy, soy, dye, and preservative free.

There was the gall bladder removal at age 3.5, and the pancreatic insufficiency that requires digestive enzymes with every food.

And, despite the most serious precautions, as well as daily probiotics and nutritional supplements, there are still daily stomach aches.

There is the AVM in the knee – the one that needed 4 procedures to finally cut off the abnormal blood flow – for now.

There was the vascular malformation in her hand that the kind surgeon was able to correct last summer – after MUCH angst.

The lipoma on her back was almost certainly Cowden’s related.

And the biopsies. The three thyroid biopsies – the most recent of which still wreaks havoc on my nerves- those are Cowden’s too.

But the chronic pain? The joint issues that make 200 mg of celebrex a necessity – not a luxury…. who knows?

And the physical therapy that is a necessary part of her existence – just to function.

What about the migraines – now well controlled, but not gone?

And I sometimes wonder why she is a bit absent minded? Shame on me. It’s undoubtedly necessary for her to survive. Imagine if she thought of all that every day, and all her daily activities? She would lose that magical smile. And I don’t want that.

The frustration is as palpable as the largest nodule in her neck. She WANTS to do EVERYTHING the other kids can do. She wants to run, and play, and participate with them. She is TIRED of being different. She is TIRED.

Swimming is a good idea, but it takes so much out of her. Last night’s practice got in the way of tonight’s. School was tough. Clammy, hot flashes, uncomfortable. Maybe she’s coming down with something, but more than likely she’s just wiped out.

Three practices a week was the plan. Two became the goal. This week it was one. But somehow its worth it, for her to be able to say she is on a team. To be able to say she swims competitively. To feel somewhat “normal.”

When she was younger I could hide things from her. Now she’s just too smart.

When she was younger I could convince her all the kids get tired. I could deflect her attempts to play too hard.

When she was younger she might not have noticed that an hour in the snow on Friday knocked her out for the weekend.

When she was younger…

But she’s older now. Wise beyond her years. And I have been where she is, and I hated it. She has it worse, and I know she hates it too.

She can swim – pretty fast. Just not too often.

She can run- a few laps back and forth in the gym – as long as she has her Celebrex and PT.

She can play outside for a bit – but not too long.

She can walk too. Until the pain in her legs, or her hip, or her knee wipes her out. Or until she has to surrender to fatigue that will keep her in bed for 13 or 14 hours.

I am grateful. You bet. And sad too. And I think it’s OK to be both.

She spent a few years in a MacLaren push chair when the walking was extra long. Now SHE is extra long – adult sized at 10. Time for adult sized reality.

SO if you happen to run into us when she needs that wheelchair, just smile and say hello.

We will remember to be grateful we don’t need the wheelchair full-time.

When you are tempted to pass judgement on my healthy looking daughter – be grateful you don’t need it at all.

Who is in charge?

Published on April 28, 2013 by beatingcowdens1 Comment

Meghan slept until 11:20 this morning. She woke only to the sound of the hammering as her father works to trim out the upstairs rooms – a project that had an intended completion date of about 2005, but hey, life gets in the way sometimes.

We had woken earlier, Felix and I – but not too much earlier. We had wanted to go to church this morning, but learned a long time ago NEVER to wake Meghan. She had gone to sleep at 8 PM last night, and if she was still sleeping soundly in her own bed at that hour – well her body was clearly telling us to back off. We have a lot of respect for her body. It gets VERY cranky if you don’t listen carefully.

My three girls... resting together. — My three girls… resting together.

But, by 11 – we had become so ingrained in what we were going to do, that it wasn’t too hard to forget that our 9 year old was still sound asleep under her covers.

When she came stumbling out of her room to the sound of the hammer she was dazed but smiling. After a good morning hug she asked what we had to do today. When I told her that we were going to stay home all day she leaped into my arms.

Can I read? Yes…of course.

Can I watch some TV? Sure.

Can I take my shower later, and stay in my PJs? Absolutely.

While part of me was tempted to lecture her about getting up and showered and dressed, I refrained. Just because I could never bring myself to spend the day in my PJs, doesn’t mean she can’t.

In so many ways Meghan and I are somewhat different, but also a good deal alike.

Our bodies eventually shut down if they are always on the go. We need our down time.

Growing up with a sister and a mother who could move like Energizer Bunnies, I always felt a bit odd that I couldn’t keep up. They still move like that. And I still need to stop sometimes.

Now, I have a mini -me. (And my sister has two! :-))

So when I looked at the April calendar earlier in the month I had had some serious reservations about whether we could pull it off. For most of the month we were on a 7 day schedule.

Meghan switched schools.

We had PT twice a week, dance class, music class, swim practice, swim meets, test prep, doctor’s appointments….

But, we did it. A small hiccup last week when she started with an ear infection, but a quick run to the pediatrician (after the orthodontist, and before it transformed into a full-blown feverish mess) and we got it under control.

State tests – 6 days of them in the last 2 weeks. Stress – all of them. But they are over too.

Yesterday I pulled out Meghan’s spring clothes. There wasn’t much we could use. The sandals from last year were a size 6. She is a 7.5. The same was true for the clothes. We put even less away for the fall. Nothing really. But we will cross that bridge then. Right now she is almost 5 feet tall and every inch of her beautiful inside and out.

No wonder she needs to rest sometimes. Her body is certainly hurrying its way through its growth.

I spent the entire day at my desk. I just finished about an hour ago when I began to write. There were bills to file, papers to sort, letters to write. There is a letter writing campaign I am working on for a stop sign by my school.

There were some Emails to answer about Isagenix – the nutritional system that is changing my husband’s life.

http://meghanleigh8903.isagenix.com/us/en/landing_toxic.html (check that out here)

There were gifts to order, some lists to make, and I can now just about see the desk calendar, as it is ready to turn to May.

I probably should have gotten outside to enjoy the beautiful day too, but I guess this was my respite. I thrive on order and organization. I showered early – like I always do, but I relaxed by creating order.

You see Mom taught me a long time ago – that the more you look for order in life, the less you will find it. “You plan – God Laughs.” And I know she is right.

I really should listen to my Mom... — I really should listen to my Mom…

However, in this world where so many things are so far out of my control – I have a compulsion to control what I can. I can make sure the floor is clean, and the bills are paid, and the laundry is done. I can make sure there are always cupcakes for Meghan in the freezer in case there is a party. I can buy the cards, and order the gifts, and endeavor valiantly to balance my checkbook.

Crazy? Maybe. But I take satisfaction and solace in knowing that there are a few precious things left in my life I can control.

The last of a long series of lab tests ordered by my friend Dr. Elice was done Saturday morning. This is the week where I will find out what 37 vials of blood and 2 24 hour urine tests turned up. I will ask the 5,000 questions in my mind about endocrine function, and hormone levels, and ratios, and vitamin absorption. And, no matter how much I try to anticipate the answer, something will knock me flat on my ass.

That is how it goes. Cowden’s Syndrome keeps us hopping. And with Meghan there is an immune system deficiency, the chronic viral infections, and so many more things we are yet to figure out.

So – for tonight, the floor is clean, the list is made, the desk is organized. For tonight I can rest, and gear up for whatever this week has in store. And somehow, after dance class, and PT, and swim practice, and 2 meets… somehow it will all be OK.

I’m not in charge of this. It’s in the hands of a power far greater than any of us.

I’m only in charge of keeping the fur off the kitchen floor.

Changes – big small, and in between

Published on March 31, 2013 by beatingcowdensLeave a comment

All sorts of changes… and today on Easter, one of the most significant.

My Mom said to me many times when I was a teen, that I would do more changing in my 20s than I ever would in my teens. She was absolutely right.

I guess she didn’t want to overwhelm me, because she never mentioned the volume of changes to take place in your 30s.

You grow up sure. You have strong opinions. And slowly… they evolve.

I’d like to say the values I was taught as a youth are still at my core, but my expression of those values has changed over time.

And, while all that was taking place – I managed to meet the love of my life.

Sometime after we married we purchased a true “handyman special,” which we are still polishing up 13 years later.

Then there was this beautiful little girl – rocking our worlds from the very beginning. NICU, colic unceasing, OT,PT, Speech, hospitalizations, chronic viruses, tests, doctors, surgeries – and eventually Cowden’s Syndrome.

She grew into a beautiful young lady – despite the odds stacked against her. Her very existence changed my long standing beliefs on modern medicine, and strengthened my faith in God every step of the way.

My family unit is so strong. We are incredibly blessed to hold each other’s hands through the twists and turns and changes life has in store.

Today was a big one.

On this, Easter Sunday, the Celebration of the Resurrection of our Lord, my family stood in front of the Moravian church and professed our intention to become members of their community.

My history, my heritage, my core, was developed as a Lutheran. My heart is now Moravian.

And their motto, “In essentials unity, In non-essentials liberty, In all things LOVE,” speaks to my soul.

We make decisions every day – guided by the power of the Holy Spirit, with faith that we are moving in the direction intended for us.

The fact we now attend worship as a family of THREE, leads me to be sure we are on the right path.

My 30s have sure been a trip. I have only a few more months left and I wonder what else is in store. But heck, then there are the 40s to look forward to. One day my mom will get a few minutes to sit still, and I’ll grab a bottle of wine and ask her all about them.