March 2009 Blog Posts (21)

Successful surgery . . .

I guess it was successful in the aspect that he tolerated the procedure and the anesthetic well. But when they went to get the kidney stone in his ureter (the tube between the kidney and the bladder) it wasn't there, it had migrated back up into the kidney. The Dr. went ahead and put the stent in and now we have to schedule the shockwave lithotripsy to break apart the stones in the kidney so that they can be passed. He is fairly comfortable right now and hasn't requested any pain meds. He is… Continue

Added by Susan Rathfelder on March 31, 2009 at 6:46pm — No Comments

Dr. Jeffrey Towbin

Cincinnati Children’s Hospital has a new member of their neuromuscular team. It is Jeffrey Towbin, MD. Dr. Towbin has been interested in and treating Duchenne patients for over 20 years. His expertise is cardiology.

We had been planning to meet for several months, but could not get our schedules aligned. During his transition from Texas, he had been coming to Cincinnati at least one week/month and finally, it is official. He is now in charge of Pediatric Cardiology. This is one of… Continue

Added by Pat Furlong on March 30, 2009 at 11:57am — 4 Comments

It is with a heavy heart that I now add a blog to my page on this site. Curtis has been in hospital for 16 days and was dischrged home yesterday on the Palliative Care Program- need I say more......…

It is with a heavy heart that I now add a blog to my page on this site.

Curtis has been in hospital for 16 days and was dischrged home yesterday on the Palliative Care Program- need I say more.......
Life is NOT good!
Robyn Continue

Added by Robyn Hoffman on March 28, 2009 at 12:00am — 4 Comments

Okay, Okay... we went to the doctor

Well I am still unclear as to what is affected my son.

But finally a ped. doc who cared! My goodness she examined him from top to bottom, better than any doctor who had seen him, (even at big name hospitals!)

Sent us for blood labs= CK Total, CK-MB, CBC, METAB Panel, and a lead screening. (Pending)

Also sending us to Physical therapy, because of the tip-toe walking, unable to alternate feet on stair climb, and his leg muscles are soooooo tight, she had a hard… Continue

Added by Deirdre on March 25, 2009 at 3:23pm — 7 Comments

double h ranch

behaving like a "normal family" is so important to my husband and i. it is so easy to fall into the "dmd family" trap. duchenne is always here, its underneath everything we do, every choice we make, from our home addition to our vacation and van choice, but it does not need to be the focus of every day. we spent the weekend with three of our boys, austin, max and baby james at the double h ranch in lake luzerne ny. this place is the best place in the world, i am sure of this. the boys went… Continue

Added by jenn on March 24, 2009 at 12:07pm — 3 Comments

It's getting better all the time.

A ten year anniversary is quickly approaching for my family. This is not the kind where we will have cake and celebrate as much as it will be time to think, reflect and wonder how this type of thing happens. In 2000, two and one half years after Matthew was diagnosed with DMD he was kicked out of school. Let me tell you why.

Alice and I wanted our children to attend a local parochial school we thought would provide an excellent education in a close knit faith community. Matthew's… Continue

Added by Brian Denger on March 20, 2009 at 8:42pm — 5 Comments

Jeffery is in surgery now please pray for him

Jeffery is in surgery now please pray for him Continue

Added by Teresa on March 19, 2009 at 12:33pm — 3 Comments

First Visit to Cincinnati Childrens and Doctor Wong

After being told yesterday that it would be August or September before getting Eric into Cincinnati Children's to see Doctor Wong, i got a call today that an opening materialized next week. Flights and hotel are not yet in place, but I told my boss "I am outta here next week!" and got full support to do so.

In order to be affordable at all, I will have to fly out with him on Saturday and tool around Cincinnati for 2 1/2 days prior to the three days of hospital time. We will also have… Continue

Added by Douglas Sanchez on March 18, 2009 at 9:30pm — 3 Comments

Surgery Scheduled

I have learned so much in the past couple of months. I know I need to be so much more proactive with Jon's care than I have been. Fortunately a very informed anesthesiologist was not shy about stopping Jon's first scheduled surgery. It is not that I wasn't aware of the possible risks and complications of anesthesiology, I was just overwhelmed with it all. So with that learning experience behind me, and a list of risky and appropriate anesthetic agents I printed out from someone on this… Continue

Added by Susan Rathfelder on March 18, 2009 at 3:50pm — 1 Comment

St. Patrick's parade

We're marching with the Cleveland Fire Pipe & Drum corp inthe Cleveland St. Patrick's day parade:

It is supposed to be awesome weatherwise! We're all excited!


Added by Brian Wolf on March 15, 2009 at 11:53am — 2 Comments

Newborn Screening in Duchenne

Next week I will be taking part in a meeting on newborn screening. Duchenne is a candidate for screening. I would be thankful for your opinions about newborn screening. Please do not think I am asking you to say anything about your son or to retrace your steps. I’m asking about going forward. What are your thoughts? Concerns? If you were having a baby, would you agree to newborn screening? Would you want to know? Why?

To review:

Newborn screening is the practice of… Continue

Added by Pat Furlong on March 14, 2009 at 2:10pm — 33 Comments

paperwork, UUUHHHGGG!

i am one of the least organized people i know when it comes to paperwork. i lose everything, and i have a carefully devised filing system that i just cant seem to use. for the most part we use a giant cork board for everything from school stuff to medical appointments and artwork. i just tack everything i think i may need at some point. im getting better, we just put a huge addition on our home, and i learned to keep EVERYTHING from contractor notes to loan information in a file, i have a giant… Continue

Added by jenn on March 12, 2009 at 4:21pm — 1 Comment

control freak

so, i have always been a bit controlling, ok, my family would say more than a bit. with the birth of my first son austin i became even more of a control freak. from diapering to feeding to tv veiwing, i knew how i wanted MY son raised. i found myself leaving any sitter with a detailed list of how to care for my baby, and was unable to relax any time i was not near him, for fear he may watch an extra 5 minutes of barney, or not wash his face before bed. ( you get the point) well, needless to say… Continue

Added by jenn on March 10, 2009 at 4:15pm — 1 Comment

laughing under water

my son says things sometimes that make me think. we got another snow storm today, and i decided to keep them home from school, the driving in our van is not great in bad weather... we were swimming ( we just put in an indoor therapy pool) and austin said, "hey mom, can we laugh under water?" i said well, it will be strange but, give it a try!

he and max dove down and i heard some distorted noises comming up in the bubbles. they burst to the surface screaming " you can, mom we laughed under… Continue

Added by jenn on March 9, 2009 at 3:33pm — 2 Comments

Identifying and prioritizing therapeutic targets for Duchenne

Who determines what drug(s) should be tested in the clinic and what are the ‘rules’ for making decisions about trials?

PPMD has requested Treat-NMD organize this committee to evaluate the therapeutic potential of approved drugs with preclinical data and develop a priority list for clinical trials. There is an immediate need to develop an impartial committee with the capability and expertise to evaluate the case for moving these drugs toward clinical trial. Evaluation must be… Continue

Added by Pat Furlong on March 9, 2009 at 2:23pm — 2 Comments

love notes

Austin has a crush! ok, so that is a secret, dont tell kaylyn, or anyone else at central school. but i cant help telling. he actually wrote he a love note, last night. talk about cute, he has tremendous learning issues, so writing is not so easy, but the note went something like this " dear kaylyn. i like you, you are hot( where did he get THAT?) you are pretty, kaylyn. love austin" of course i couldn't let it be. who is this girl that makes my son blush? does she like him, he is adorable but… Continue

Added by jenn on March 6, 2009 at 1:07pm — 5 Comments

Life just keeps happening

I haven't really been on here for a long time. We were without a computer for over a month--from Thanksgiving until New Years. My hubby had a couple of business trips and just couldn't get to it. Then Jon was diagnosed with kidney stones. He has 3 stones -- two in his right kidney that are about 1.1 and 1.3 cm (that's about 1/2 inch each) and he has a 1.9cm (that's 3/4 inches) in his ureter, the tube from his kidney to his bladder. He was scheduled to have surgery to break up the one in his… Continue

Added by Susan Rathfelder on March 6, 2009 at 12:07am — No Comments

Surgery on the horizon too

My son Matt was scheduled for surgery on Feb 27, 09, he spiked a fever a few days prior and ended up in the hospital with pneumonia for four days. A part of me feels frustrated he was not able to have the surgery as it should help with the chest colds I'm told. Another part of me is feeling releived he did not have to go through such a major surgery as I too have feared the worse at times. It's hard to know what is the right thing to do at times. Signed, feeling your pain in Utah

Added by Monica on March 5, 2009 at 9:30pm — 1 Comment

If I needed someone

I've always enjoyed photography, it really takes a lot of time to do correctly so I don't spend the time taking pictures as I once did when my children were younger. I picked up this hobby from my father and maybe because I dislike having my picture taken I stand behind the lens instead of in front (Fortunately few pictures of me as a teenager have survived!). In the dining room of our home I have one wall covered with framed pictures I've taken over the years. As you might guess most are of… Continue

Added by Brian Denger on March 4, 2009 at 3:04pm — 1 Comment

My Favorite Drug

A few weeks ago, I received a call asking about ‘my favorite drug’ for clinical trial. My answer is pretty simple. There are a number of publications suggesting certain approved drugs may have benefit in Duchenne and they run the gamut from anti-inflammatory agents to well, I cannot think of something that starts with a Z, but you get the picture.

I don’t have a “favorite.” Rather, I think you have to be thoughtful and act; do a literature review, asking questions related to the… Continue

Added by Pat Furlong on March 3, 2009 at 2:39pm — No Comments

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