Erik Quinn: The Heart of a Family: Growth

Saturday, February 02, 2008

Growth

I just woke up from a dream in which I had been arrested for an unknown offense and incarcerated at a women's correctional facility in a small cage at the top of a tall tower that swayed in the wind. The movement of my cell was so pronounced that motion sickness was a permanent ailment. I began to complain to a nearby guard that my stomach was really bothering me from being in the top cell of the tower and that I would like to be placed lower like the other women were. To my own horror, I then heard myself cave in, just as I always seem to do in reality, explaining that I was tough enough to handle it, even though I was screaming inside my own head that I felt like I would die there if something wasn't done.

I am now seriously considering canceling our appointment with the rehabilitation specialist. I asked Erik's private physical therapist, who was kneeling on the floor stretching my son like a happy little pretzel at that moment, what she thought of seeing this person, and she let out an obviously irritated snort from her nostrils in response, making me jump a little. She told me that Erik was "doing fine" and that seeing a developmental pediatrician in Portland instead might be a better idea. It was Erik's doctor who referred us to the rehab specialist, and I am now more confused than ever as to what to do. I no longer feel good about this new physician, and Erik's PT informed me that she just automatically refers children to our local hospital. This is not good news, as they are unable to help us at all unless there is some sort of heart-related problem that needs to be addressed. All I want is some reassurance that I am doing the right things for Erik medically, and I feel like I am being short changed.

The last time we set foot in the hospital in Portland was the day we were given our diagnosis. The geneticist seemed completely uninterested in seeing us ever again, and I can't seem to find exactly what we need on their website. I suppose this means I need to call the genetics department for guidance. I'm frustrated because I feel like I got steered in the completely wrong direction by Erik's own doctor. The fact that Erik's PT seems to detest the new physician here also doesn't make my decision making any easier. Erik's PT did say, though, that many parents with children with genetic deletion syndromes travel to Portland once a year to be seen. Maybe that's what we need to do.

In the meantime, Erik grows at the speed of a newly-rooted kudzu vine. My father pointed out how amazing it was that Erik's toes have shot past the end of the soles of the orthotics he wears on his lower legs, seemingly overnight. Although he has worn the braces for over a year now, his toe walking is more severe than ever, and if he doesn't wear braces, he is so jacked up that he practically falls on his adorable little face. His body has grown, too, and yesterday I witnessed him crashing into furniture, walls, and toys, tripping over his own appendages as if he had consumed four Long Island ice teas. He has always been cautious about moving about the house and has now sustained more injuries during this week than he has in three years. Erik's fine and gross motor skills have always been documented to be very poor, but this is completely a completely new low for him, making me wonder if he suddenly has more of his own body than he is used to carrying around. I just have this feeling in my gut that won't go away. He is changing in every way, seemingly by the second, and I want someone to tell me exactly what's going on medically as he grows at light speed and his body seems so tight. I don't want to hear "He's fine" and feel like an idiot for asking in the process.

I just want help for once when I ask for it. That's all. Is that so wrong?

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7 Comments:

Blogger Julie said...

Nancy I can only speak from experience when I tell you I feel you should go see the developmental pediatrician. We see ours once a year and he seems to know more about WS than anyone else. Especially since none of his therapists had ever heard of it and his pediatrician is limited. It beats driving to Kentucky to see Dr. Mervis, which my husband refuses. Anyway good luck. I know you will do what is best for Eric and your family.

9:34 AM  
Blogger Kerry said...

Hey chickee- I have never heard of a rehabilitation specialist so I can't offer any advice on that, but I will say that if Portland is the place with the biggest and busiest hospital, I would definitely go there. They will have more and better resources than any local hospital. We are 20 minutes away from two local hospitals but we drive an hour to Children's in Boston because you can't beat the specialists there. Our pediatrician has told us if we ever God Forbid need to call 911 on Brady, tell the ambulance they are to go directly there instead of locally.

If you like your PT and trust her, I would also go with her gut too on the doctor. You already have some qualms about the doc, and your PT probably knows a lot more than she can tell you because of confidentiality. I would call Genetics and request to be seen - I am surprised they don't have annual visits set up with you.

Thinking of you lots over here~ hope it gets sunnier soon in Ore!

1:17 PM  
Anonymous joshua's mum said...

I strongly urge all mothers to trust their gut intstinct when it comes to their child. Our 3rd daughter nearly died at 4 months of kawasaki disease. I told my peadiatrician I thought it was kawasaki disease based on my DK medical book and a paragraph of symptoms. He looked at me like I was an idiot. Two day she was rushed to emergency. I pushed again and he still said no. She got worse and was rushed to a larger hospital were my diagnosis was confirmed. The delay caused her permanent heart damaged. I am happy to look like an idiot any day when it comes to my childrens health. Love your dream Nancy

4:28 PM  
Anonymous AUNTIE DEE-TA said...

HEY YOU! IF YOU EVER NEED TO TAKE A TRIP TO PORTLAND... I AM YOUR GIRL! I GREW UP THERE AND WE COULD HAVE FREE PLACES TO STAY AND BE TREATED LIKE ROYALTY! YES... MY FAMILY AND FRIENDS LOVE ME AND OF COURSE YOU!!! AND ERIK WOULD GET JUST SO SPOILED AND LOVED ON!! AND OF COURSE I KNOW OF SOME FUN SHOE STORES IF WE NEED TO DESTRESS!

YOU ARE ONE AWESOME MOMMY AND YOU GO WITH YOUR MOMMY INSTINCT... IT IS A GIFT THAT GOD GIVES US MOMMIES!!!!

I THINK YOU SHOULD SEE EVERYONE! EVERY DR., THERAPIST AND SPECIALIST AND THE LIST GOES ON AND ON. THEN COME UP WITH YOUR DECISIONS... BRIAN AND YOU HAVE BEEN DOING A GREAT JOB SO FAR WITH ERIK AND HIS CARE!!! I KNOW THAT YOU GUYS WILL FIND THE ANSWERS ALONG WITH THE RIGHT DR. TO HELP YOU TAKE CARE OF ERIK!

ALWAYS IN MY THOUGHTS AND PRAYERS AND GIVE ERIK A BIG AUNTIE DEE-TA HUG!!!!

AND ONE MORE THING... YOU TRULY DO NOT NEED TO SHARE THE SNOW NO LONGER! IT IS SOOOO WINDY HERE AND THE SNOW IS JUST DUMPING FROM THE SKIES!!! WE ARE TO GET ABOUT A FOOT BY TOMORROW MORNING!!!

6:24 PM  
Blogger kathi said...

Read the recipe grades first...FUNNY.

The dream was scary. And I ditto Joshua's mom, always and I mean ALWAYS as in EVERY SINGLE TIME, trust your gut.

5:20 PM  
Blogger Amy said...

Your gut says, "go to a children's specialist in Portland." Period, you will find answers there, I second your gut, they will be familiar with WS, have patients with WS, and know how to help Erik and will be able to address every developmental issue. I have never had much luck with geneticists, they are more researchers than anything, and tend to just regurgitate what they read.
XOXO
Amy

6:57 AM  
Blogger Every minute counts.... said...

I agree with the rest...go with your gut! If you trust the PT and she just confirms what was already in the back of your mind...go to Portland.

Noel

7:19 AM  

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