My girl – Page 16 – beatingcowdens

My Young Teacher

Published on June 15, 2013June 15, 2013 by beatingcowdens2 Comments

As I was getting ready to say goodnight to Meghan a few days ago, she was visibly upset.

During our conversation I learned that she felt the cleaner I had just given her for her face had made the small bumps she has (courtesy of Cowden’s Syndrome) more noticeable than before.

I didn’t see it.

I look and I see my beautiful daughter – radiant inside and out.

Cowden’s affects the skin, and sometimes we get these obnoxious small bumps in all places you would never want them. Dermatologists with little experience with the syndrome don’t recognize that each one is in fact a tiny benign tumor, in the hair follicle, causing inflammation.

She is almost 10. She is 5 feet tall. She has fantastic hair and a great attitude about life. But, like any girl in this society she gets self conscious about her appearance at times.

So, in my effort to reassure her that her “bumps” were most noticeable to her, I showed her my legs.

Both legs are riddled with bulging, pulsating, colorful varicose veins. I have had 7 surgeries to keep them under control and eliminate the pain that goes along with them. I have over the last 2 years lost about 35 pounds. They just don’t let up.

I told her how self conscious I am about my legs. I told her how hard it is to wear a bathing suit, or shorts. I told her that I have only bought my first shorts in over 10 years in the last 2.

I know now what I didn’t know then – that these relentless varicose veins are likely a credit to my Cowden’s Syndrome, and the same path that led Meghan to that pesky AVM in her knee – a generation earlier presents as these veins in me.

She looked at me, pointing out my own insecurities, and she said Mom, you have to understand – it looks worse to you. And you have to remember, “Some people only wish they had legs… or legs that work.”

And there it was. My girl again.

“Sometimes your blessings come through raindrops, sometimes your healing comes through tears…” – Laura Story

We took the iPad. We looked at pictures of veins. We looked at pictures of acne. We looked in the mirror. We hugged.

Sometimes its so hard. One battle after another on this journey.

I don’t know that I could handle anything so gracefully without my young teacher.

Saturday Adventures

Published on May 25, 2013May 25, 2013 by beatingcowdens1 Comment

I have this delusion in my head of what a Saturday should be. I think sometimes about getting up – not at the crack of dawn, but at a reasonable hour. Getting a quick breakfast and jumping in the car to head… well wherever we want to go. I think about spending Saturday as a family. Worry free. Relaxing together. Sharing an adventure.

Then there is reality. It has a way of biting you in the behind when you aren’t paying attention. (Or when you are practicing active ignoring.)

Reality is that we have two working parents in this house. That same reality that allows us to pay for the medical bills that creep up, and the fun stuff like vacations, is the same reality that means Saturday afternoon adventures are uncommon. Well, almost unheard of anyway.

I have a grocery shopping routine – down almost to a science. About every 3 weeks on Friday night, I go on the marathon. I stop at Costco, and run home with what we need. Then I head to Wegmans in Woodbridge, and Whole Foods in Millburn. The whole journey is about 40 or so miles, and it takes about 6 hours from door to door. Then there is the unpacking…

Why?

Well food sensitivities have kept Meghan gluten, dairy, and soy free since she was about a year old. She is also very sensitive to dyes, preservatives, nitrites, food coloring, and the like. Her diet is pretty much pure and organic.

Local shopping is not as plentiful as that over the bridge, and prices are flat out better there. So, last night as we undid the (ridiculous amount of money) worth of groceries, and I put a soup in the crock pot for today, I was about to fall over from fatigue.

The piles of laundry already covered the basement floor. The beds would need to be stripped in the morning. The bathroom was in dire need of a cleaning after my husband repaired a pipe that burst under the bathroom sink. I thought about shutting down the alarm and just letting my body do the talking this morning. I thought about it for about 3 minutes.

Then I took a flashlight into Meghan’s room. I covered her eyes and looked at the sores on the right cheek of her sleeping face. My heart sank. I turned the alarm on. I knew where we had to be in the morning.

In addition to having Cowden’s Syndrome, Meghan suffers with an immune deficiency. Well, technically speaking probably more than one. She is IgG subclass 1 deficient. Her body doesn’t seem to remember how to fight infections. She is also Mannose Binding Lectin deficient – a whole other element of the immune system – just absent.

Usually she holds her own. She takes a HOST of vitamin and mineral supplements. She eats that pure and largely organic diet I spoke about, and aside from seemingly chronic fatigue, she does OK most of the time. She can’t be running around too long or too often. She can not be over stressed. These things wear her out, and then we have trouble.

When she was just 6 months old she was first hospitalized with an infection of Herpes Simplex 1 (fever blister) on her right cheek. It was odd the location it started. It was in the middle of her face. Before we knew what it was it had become cellultis, and we spent a week in the hospital. The first 2 days were the scariest as the blister kept increasing in size. Eventually my pediatrician at the time called in an infectious disease specialist (my pediatrician now,) who swiftly diagnosed the herpes simplex, and began IV acyclovir. Within 24 hours things calmed down. A week after we were admitted, we got to go home.

However she never, despite a few miserably failed attempts, got off the acyclovir.

She spent another week in the hospital at about 20 months, treating an aggressive outbreak.

At one point we slowly weaned her to 500 mg a day only to have her develop a very painful trigeminal neuralgia which the oral surgeon wisely explained was caused by the herpes virus taking up residence in the trigeminal nerve in her face.

We promptly went back up to full dose, only to watch the pain fade away in a few days.

We have seen minor outbreaks through the years – usually nothing more than a red mark to indicate its time to do something. We have slowly watched her dose of acyclovir be increased. Currently at 80 pounds she was taking 1400mg a day.

We worry about the liver. About whether there are long term effects. But there really is not a choice.

That’s why as I shined the light on her face last night I knew this morning would involve a trip to the pediatrician.

We arrived bright and early and as he greeted us warmly he sized up her face in one brief glance.

“I see our old friend is trying to make an appearance. Raise the acyclovir to 1600mg. Move to 3 times a day to help it get through the system better. Take a picture every morning, and call me if it doesn’t improve. I will see you in 2 weeks.”

We stopped at CVS. We texted a friend’s mom for a play date. Then we got home at about 11:30 – drained.

Felix was working to bleach the bathroom – a job my asthma doesn’t allow.

There were human beds and dog beds to wash. There were floors to clean, and dishes to do. There was spaghetti sauce and some gluten free cookies to make.

As I heard the sound of giggling girls from behind Meghan’s closed bedroom door – I took solace in the fact that at least she had an adventure today. Even if it was in the house.

Cowden’s Syndrome and the immune system don’t seem linked on paper. But, anecdotally I hear of issues from every Cowden’s patient I correspond with. What goes on in our bodies to make it just so hard to put a virus to rest?

One child. One diagnosed genetic disorder on the tumor suppressor gene. A mannose binding lectin (a protein) that is also missing. An IgG subclass deficiency. Metabolic errors still being unearthed.

And I was looking for an adventure?

I should be happy and content with the Saturday cleaning. It is the most rest we seem to get!

Keep on, Keeping on!

Published on May 20, 2013 by beatingcowdens2 Comments

Several months ago I wrote about “The Beginning of the End” Meghan was having trouble keeping us at dancing school. The pain kept getting out in front of her.

https://beatingcowdens.com/2013/03/25/i-fear-this-is-the-beginning-of-the-end/

While in some ways the decrease in stress these last few months, plus the return of Physical Therapy twice a week, have helped her pain – but, it became increasingly evident dance was just not meant to be.

She was sick, and missed class. Then she was hurting, and missed another class. She missed the dress rehearsal and trophy night because she was home from school with a low fever. Always seems to be something.

So as we headed out to “Candyland” yesterday morning, we all knew it would be her last recital. The dancing takes a toll on her joints that it would be foolish to keep repeating. But, that didn’t dampen the mood on the soggy Sunday. Meghan was ready.

We started her day with the electrolytes from Isagenix that help her so much. Then we left her backstage at the theatre with all the other dancers.

It can get long when your dancer is in number 25 in a show of 27 acts, but I find the other dances entertaining, and before we knew it – she was on stage, ready to shine.

There was no pain evident in that body as the rush of being on stage overwhelmed her. She smiled and moved in ways my body just never could – or would.

When I met her at the stage door to bring her to her waiting father and grandparents, I had some flowers in hand for a job well done. She knew this was it for her, but as always – she kept looking forward. “I will get on stage again Mom. Maybe in Junior High, maybe in a theater program. I can’t keep dancing, but I love the stage.”

We took lots of great pictures. We cherished the memories. We enjoyed a nice lunch of Gluten Free pizza.

Yesterday was a rush

Today came the pain. The elbows, the knees. An epsom salt bath, and some relaxation. It helped some, but its hard to tell. She is so used to the pain.

And as she headed to bed, “How many weeks until my swim lessons start?”

Cowden’s Syndrome, you SOB. You may have me exhausted, but you picked a worthy adversary in my girl. She will not go quietly. She WILL win.

“Beatingcowdens” Not just a blog title, but a way of life.

“Count Your Many Blessings…”

Published on May 12, 2013 by beatingcowdensLeave a comment

“Count your many blessings, count them one by one. Count your many blessings see what God has done…”

The song has been stuck in my head all afternoon. I remember as a youth singing the song in church. I must have sung it plenty of times, because the lyrics are stuck in my subconscious. And, as things int he subconscious tend to do – they often pop out at just the right time.

A busy weekend full of blessings.

Saturday we celebrated the anniversary of my Mom and StepDad. 25 years is quite a milestone, and we were so thrilled to celebrate with family and a few dear friends.

What a blessing that among the guests we had Grandma and Pop, and Grandma Hansen. Although we missed Grandpa Hansen we were so thrilled to count our blessings together.

Mother’s Day morning I woke alongside my awesome husband. I was greeted by my beautiful daughter and lots of hugs and kisses. Some hand made cards, and a few nice gifts and we were off to church.

We traveled after church. to visit with Felix’s Mom and Dad. We endured the (It could have been worse) Belt Parkway and spent some time with his parents, sister and nephew. Felix’s Grandma passed away just a few short months ago, so this day was especially difficult for his Mom who was very close to her Mom.

On the return trip we make a quick visit to my mom and got to see the grandparents again. How many 39 year olds can kiss a few Grandmothers on Mother’s Day?

How lucky am I to hug my Mother – a feisty lovable survivor of cancer and life? How blessed am I to have her in my life -by my side?

As we headed home, absolutely exhausted. That song started in my head.

“Count your many blessings…”

I thought of the friends I have who are desperate to be mothers. The friends who had to struggle to have the children they have. The friends who have miscarried, and friends whose young children live in Heaven. I thought about friends who miss their Moms, whose hearts ache every day at the loss – whether it was last week or a decade or more ago. I thought about my friends who never got the years with their grandparents that I have had.

Shame on me for feeling tired. How lucky am I to need a list to shop for Mother’s Day Cards? How fortunate am I to have so much visiting to do that I can sparsely fit it all in?

One might think Mother’s Day is for relaxing – or spending quiet time alone. But, I am aware that those years will come all too soon. For now – let me run, and visit, and hug and chat. Let me relish the moments in a life that is fleeting.

I kissed my little girl tonight. I held her almost 5 foot frame and cuddled her as best I could.

She won’t be in school tomorrow. A rampant virus, and her rotten immune system are not a good match. She won’t plant with her science class the way she likes to. She won’t play in the yard with her friends.

Tomorrow will be yet another day in the complicated life of a little girl with a multifaceted Rare Disease. A day of differences and disappointments. A day she will handle with the same graceful smile she uses for every other aspect of her life.

My daughter is the one who reminds me to count my blessings.

And, oh do I have many!

All kinds of tests

Published on April 16, 2013 by beatingcowdens5 Comments

So my fourth grader told me today that her State Exam was “tricky,” but she thought she got only 2 wrong.

I have absolutely no idea if her assessment is accurate. I am only grateful that for one afternoon, her anxiety was lower.

Last night before she went to bed, we spoke a lot about testing, and my expectations for her.

As I have said before stress, and chronic illness just don’t mix, so I am careful with my words.

So, I explained to her that her best – regardless of the attached number – will ALWAYS be good enough for her father and I.

Wise beyond her years, she quoted a former teacher who apparently told them, “Your best is good enough for your parents. Your best is good enough for me. Now make sure your best is good enough for you.” This followed by a cheery, “Chill out – You got this!”

As she lay her head down, last night, and tonight, she repeated those words to me.

There really are so many teachers who “get it.” The kids are so much more than any number on a piece of paper.

It is such a challenge being on the parent end of things.

But, at the end of the day, these aren’t the tests that matter to me. Not really.

On Monday the 1st of April there were 13 vials of blood. On Saturday the 6th there were 15 more.

This weekend there was a 24 hour urine test, and 7 more vials of blood before school Monday.

These are the tests that keep me up at night.

These are the tests she has no control over.

These are the tests whose scores really do matter.

Hormones, Thyroid, neurotransmitters, immune function…etc… etc…

The results for the school tests won’t be in until August.

Some time in the next week I will have to deal with this latest lab panel, and determine if we have any new answers, or just more questions.

Perspective is a definite reality check sometimes.

She will go to school and do her best, and I know regardless – she is already successful.

I only wish I could hold onto that same confidence, as I await these lab tests.

Maybe…

Published on April 10, 2013 by beatingcowdens2 Comments

And that is what we took.

Stuck in a corner – a stifling corner, with anxiety, and all of its evil friends – we decided to break free.

And I can not think of a better thing we could have done.

Today was Meghan’s 3rd full day at her new school, and while she misses her friends – she is adjusting beautifully to the welcoming students and professionals that have greeted her.

She received an outstanding foundation at her old school – teachers who worked alongside her right up until we made the move last week. She received a foundation from them that will allow her to soar here.

I am eternally grateful.

But there is a time for moving on.

Sometimes it happens neatly at the end of 5th grade. And sometimes it happens before that. This was her time.

Which shouldn’t surprise anyone because nothing really seems to be wrapped up in a neat little organized package – not in life, and certainly not in Cowden’s Syndrome.

She changed schools, but the Syndrome stays. And sometimes that’s a hard reality to swallow.

See she is so excited to meet new children, and to run and play and socialize – we hoped that maybe the release of tension would eliminate the pain. It took a few days for the pain to catch up. But, it moved too. It lives with her – no matter what school. Although I am convinced it is less than it was.

Stress is evil. Tension is its nasty twin. The conbination wreaked havoc on her already struggling body.

Now, there is much less stress and tension, but there is still pain. A knot in the hip that doesn’t want to quit is pestering her still. And while I am grateful that the tolerance is higher, I am not sure if the pain is any less.

Any time an injury lingers, or a pain persists for more than 2 weeks – even if it is intermittent – we have to ask ourselves if it is time to go for imaging.

Xrays are not good for Cowden’s Syndrome. Radiation can send our sensitive cells into a tailspin. And the alternative – MRIs, are taxing – on everyone. But how long do you wait for a pain to go away when you have a syndrome that provokes tumor growth? How do you know what is the right time?

We scheduled the summer appointments. I was hoping to wait until then for all the check ups and tests.

Somehow, I suspect we will have to see someone a bit sooner.

But, I am stalling. Maybe the happiness will cure it.

Maybe swim season – her first ever competitive sport she ADORES – will straighten it out.

Maybe.. just maybe… we won’t have to add one more confused doctor to the list of clueless professionals who don’t know how to help us anyway.

Maybe… her blood results from Dr. Elice will come in this week, and maybe there will be an answer or two.

Maybe…

Maybe I will just go fill up my wine glass again.

SHE Who Never Gives Up!

Published on April 4, 2013April 4, 2013 by beatingcowdensLeave a comment

There is a card on my desk from a dear old friend.

It says, “She Who Never Gives Up”

I was quite flattered to receive it, as I did, and still do – perceive it as quite the compliment.

However there are some definite dangers to being, “She Who Never Gives Up.”

SHE feels the STRESS of life very deeply, and STRESS doesn’t go well with chronic illness.

SHE fights for what is right – in a world that doesn’t always give a crap.

SHE persists until people pay attention, even when they don’t want to.

SHE advocates without ceasing for the needs of her child.

SHE finds it unacceptable when her child is placed in stressful situations unnecessarily.

SHE plays a doctor, a lawyer, a researcher, and a teacher – all in real life.

When people don’t do the right thing, SHE reminds them.

SHE doesn’t quit- ever.

Some people find that SHE is annoying – a real pest.

Some people wish SHE would just go away.

Some people would like it if SHE expected a little less from them.

Most people wish SHE didn’t expect them to do their job, and do it well.

SHE is not perfect, and never claimed to be.

SHE makes the best decisions she can- with what SHE has, where SHE is.

SHE tries to eliminate the stressors in her life, and simplify – although they keep cropping up.

SHE will continue to battle with all of her might – despite bone crushing fatigue and sometimes against all odds – until her little girl can lose some of her unnecessary stressors.

Cowden’s Syndrome, and all its battles bring enough – the rest of the STRESSFUL situations are officially uninvited into our lives.

SHE will rest when her little girl finds both her inner AND outer smile.

“She Who Never Gives Up.”

Thanks my friend, for the vote of confidence. You will never know how much it has meant.

I fear this is the beginning of the end…

Published on March 25, 2013March 25, 2013 by beatingcowdens5 Comments

… of dance class that is.

It sounds so dramatic. I guess maybe its not such a big deal. But today it feels like one more thing on a list Cowden’s Syndrome has robbed her of.

Meghan was never going to be a performance dancer. She wasn’t going to do ballet for hours. But, for the last 3 years, she has taken one dance class a week.

First recital - 2011 — First recital – 2011

Hip Hop.

Not because she knows the music, but rather because they dance in sneakers – and that is better for her joints.

I can’t say enough good things about the studio. The owner is a compassionate, kind, professional, lovely woman who strives to make every child feel like a million bucks. She revels in their accomplishments. She celebrates every ability level. She truly loves children, and dance.

This place is the perfect fit for Meghan.

Her joints acted up in the fall. She missed a month before she could get it back together. No worries – no sweat.

A few weeks ago she twisted an ankle at dance. Xrays, a sprain. A week or two off.

Then there was the shoulder thing. Not dance related – but it still cost her some time.

And then tonight. I picked her up from class and her flushed face told the story before her teacher had to.

“She hurt her hand, but we don’t know how.”

I do.

EFF YOU COWDENS!

So, I took her home. There was a shower, and some ice. Nothing more than a light sprain I am sure. But her back hurt too. So we put her to bed very gently. And we spoke about maybe finding ways to increase swimming instead of maintaining dance.

The recital though is such a rush. She loves it. She loves being on stage – the energy. The celebration.

On stage - May 2012 — On stage – May 2012

Physical Therapy tomorrow morning. We will let Dr. Jill input her thoughts – although I already know them.

She is pretty good when she dances. She is a quick study. She has made so much progress. And she has some moves. (Those are NOT from me!)

She will ultimately get to decide. Although its probably for the best to back out now – before she really gets hurt. The final decision will be hers. So I say.

In reality the final decision has been made by Cowden’s Syndrome, and its ruthless attack on her joints and muscles, and connective tissue.

She is resting peacefully – for now. But I am cranky.

Things tend to work out as they should, but I am still waiting for this little girl…(young woman…AAAKK!) to catch a break…

Mamma Bear

Published on March 17, 2013March 17, 2013 by beatingcowdensLeave a comment

Tomorrow is Meghan’s annual review for her IEP meeting.

It should have been an easy meeting. Continuation of PT and the paraprofessional until her triennial next year.

The Cowden’s Syndrome clearly warrants PT. We already have 2 sessions a week outside, and THEY want her to receive additional services inside the school.

She hurts, (by her own words)

https://beatingcowdens.com/2013/03/03/moving-backwards/ (This is a link to a speech she gave in school)

all the time. Some days she is just able to make the best of it.

Last week we lost 2 days of school (and work.) We saw 5 doctors, including an ER in those 2 days because of severe pain and virtual immobility in the left shoulder. No obvious trauma. Just the life of a 9 year old with Cowden’s Syndrome.

Cowden’s Syndrome can often be accompanied by hypermobile joints, making injury during daily activities much easier.

Cowden’s Syndrome is also a condition of over exaggeration by every body part. The smallest injury warrants a full, and sometimes incapacitating inflammatory reaction.

We manage a lot of things with Celebrex. But it is not a miracle drug.

We can not keep her in a bubble. She is 9 and wants to run and play.

But, that doesn’t mean her PT needs “don’t affect school function.” They do affect it – in so many ways.

So that is my job tomorrow. To get my point across. To speak for my girl.

Mamma bear is almost ready…

To protect baby bear… She WILL get what she NEEDS!

“I’ll get you my pretty…”

Published on March 12, 2013 by beatingcowdens12 Comments

It is late, but I need to decompress. my apologies to those of you I meant to reach out to personally.

Really – the last few days again have been a whirlwind.

The Wizard of Oz seems the appropriate metaphor – so bear with me.

Some time last week Meghan began complaining of shoulder pain. Left shoulder – mildly irritated. So, we gave some tylenol and kept on moving. But come Sunday afternoon it seemed to take a marked turn for the worse. And that is where the story began.

She was struggling to move it at all, and the pain face was coming. You know – the face that tries to be brave but is so strained it just ends up looking exhausted? That one.

We got her to bed Sunday night but started to wonder if she would make school the next day. We waited until she was sound asleep and began poking at the shoulder. Sounds mean I know, but we figured if we got a pain reaction out of a dead sleep… and we did.

So I began to Email her awesome PT who did her best to help guide me and keep me calm. She also got me a 1:15 appointment for Monday.

I emailed my boss that I would be out and I let her sleep in Monday. Then she woke up. I guess that’s where it started to get trickier.

Well, maybe not quite that tricky yet – but close. The pain was intense. We decided to try the Urgi Care to see if she needed an Xray. We waited and were seen by a perplexed doctor who decided against the Xray and suggested we see the pediatrician. Great plan. He was on my list but I was hoping to get a jump start since his hours didn’t start till 2.

In the mean time, we went to see the PT. Have I mentioned Jill and Lauren at Leaps and Bounds PT are the absolute BEST? We saw Lauren who calmly assessed Meghan through careful range of motion activities. It was clear she was in great pain. Lauren told me she was worried about the muscles – clearly strained, and the potential that there might be a slight injury to the rotator cuff.

At this point I swear I heard the sound of Cowden’s Syndrome, like the Wicked Witch, cackling in the background, “I’ll get you my pretty…!”

My heart sank. The shoveling hadn’t helped I am sure. But the swimming. That had to be the real culprit. I felt like I had been punched in the stomach, or perhaps that someone had dropped a house on me.

It had taken years to find a sport that she enjoyed. One that she was ENCOURAGED to do. The pride and excitement on her face – amazing. And now the threat that maybe it caused this injury. My thoughts flooded with wonderings about the future.

At 2:30 we headed to the pediatrician. He evaluated her but wanted an orthopedist. We tried three. None took my insurance. Finally they found one local that takes my insurance who would see her Weds. (tomorrow) at 4:40 – but don’t worry because they are triple booked and we should plan on waiting 3 hours.

Um… no.

So as I stood at the window of the pediatrician’s office I asked him to order the MRI that seemed inevitable. He reluctantly did. Then I asked him what to do for her for pain. He called us back in and looked at her again.

He said what I already knew. He said, ” No one around here has a clue about Cowden’s Syndrome, and they don’t want to touch her.” Take her off Staten Island. Go up to Memorial Sloan Kettering where they first diagnosed her AVM. Go to the ER up there. We have no way of knowing if the knot behind her shoulder is a muscle or a soft tissue tumor. (Thank you Cowden’s)

“I’ll get you my pretty…” There goes the cackle again. And a firm reminder to Cowden’s that it WILL not get us

This was at about 5. So, we had a quick bite to eat and headed up to 68th and York. They were perplexed by our arrival, but they handled it fine. They got an Xray, and made Meghan comfortable with heat packs and pain medicine. The Xray wasn’t read because there was no radiologist on, so we were discharged hours later with the pain pills, and orders to see an orthopedist – the one who diagnosed the AVM, and to call our endocrinologist for the Xray results in the AM since he is the one we see at Sloan.

At this point Felix had joined us and we were all a bit punchy. Meghan was stiff and in pain. I was over thinking and exhausted… together we made quite a sight.

We arrived home after 11 and I headed down the street to the 24 hour pharmacy for her pain medicine. Except – they didn’t have it. And they offered me no suggestion as to where to get it. So, at 11:20 – armed with my smart phone, and facebook, I relied on the guidance of a few night owls to get me to a pharmacy. Medicine retrieved, heating blanket purchased, and Twix consumed – I headed home some time close to 1AM.

Felix was staying home Tuesday. It was Parent Teacher Conferences for me. So my head touched down on the pillow some time around 1:20 AM.

Too tired to even think, I could still hear the cackling of the witch – reminding me so much of Cowden’s Syndrome… threatening… “I’ll get you….”

I headed out to work by 7:30.

I called for the Xray results and got a reprimand by our doctor at Sloan that was appropriate for a child. He was annoyed that I had even brought her to the ER last night. I told THAT doctor to take it up with my pediatrician. I really despise arrogance.

In contact with Felix and Meghan we got an appointment for the orthopedist, on the 21st of MARCH!

Since that wasn’t going to work a long term plan, a call to the rheumatologist led to an appointment at 2:30 PM today.

Basically she feels the lump is a muscle and not a tumor…. (So take that bucket of ice water witch!)

She gave Meghan an order to rest for a week. Better than a season! She also gave a script for PT and a muscle relaxant for a week. We will reevaluate then…

In the mean time, she is asleep. Resting with a heating pad. School tomorrow will be tough, but she will make it.

I got through hours of conferences and stayed alert and awake!

I will find the number and call the coach about swimming.

We will not give up. But apparently she needs PT AND swimming, not PT OR swimming. We have time. Not a worry. We will fit that right in.

You know what, it has been a wild two days. But it could have been a whole lot worse.

Everything with Cowden’s seems to have a sense of urgency. There is always the “what if…” Her joints are hypermobile because of the Cowden’s. She injures easily. But all that means is we have to teach her to get in control of her body. So the PT is a have to. That’s ok. Could be worse. Least we love our PTs.

AND… it will be PT AND Swimming. My girl loves to swim. And she’s not half bad.

A few readjustments. A few more bumps in the road. A few more skipped meals, and some more gray hair. But it will be OK again.

Cowden’s Syndrome gives us obstacles. We work around them, through them – whatever is appropriate. As long as we don’t stop.

And well – if anyone says we can’t… we just melt them. It’s much quieter now.

Hopefully tomorrow runs smoothly.

But for tonight…