Susan Rathfelder's Blog (12)

Are we supposed to know?

We just got back from the neurologists office where we got the DNA test results back. This is the test done at Athena Diagnostics and it did not shed any light on the subject at all. The results came back as - "This analysis did not detect any deletion/duplication nor any abnormal DNA sequence variants in this individual's DMD gene." So after 3 DNA tests and a muscle biopsy all we know is that there was very little dystrophin found in his muscle sample. None of this changes anything, so maybe… Continue

Added by Susan Rathfelder on October 8, 2009 at 4:02pm — 3 Comments

Kidney Stones - Round 2

Yesterday Jonathan had his remaining kidney stones 'blasted' by lithotripsy. It was successful, the Dr. said the stone was 'blasted' to dust. He is having no trouble so far passing the broken up stone. We go for another x-ray and to see the urologist in 2 weeks. If everything is clear they will make the arrangements to remove the stent in his right ureter. I hope they can figure out what caused him to form these stones so we can prevent having to go through this again. Two of his seizure meds… Continue

Added by Susan Rathfelder on June 2, 2009 at 7:30pm — No Comments

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

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

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

Our 25th Wedding Anniversary

Today is our 25th wedding Anniversary.



When we started out 25 years ago we never imagined that life would be is hard as it has been. If were not for God’s grace and mercy, which are given to us anew every day we would not have made it. There are so many times it would have been so easy for us to go our separate ways, but I cannot even begin to imagine walking this journey with any one else. While Muscular Dystrophy has placed a huge strain on our lives and our marriage, in many ways… Continue

Added by Susan Rathfelder on September 3, 2008 at 3:08pm — 3 Comments

Adventures in Serial Casting . . . Round Two

Well, yesterday they casted his right foot. She checked his left foot and felt he hadn't lost too much range and still fit (just barely) into his night splint so we are going to let that one be for now. I am still hoping that somehow this will all sink in to Jonathan that we; his parents, the PT and his Dr. are just trying to help him the best we can. The rest is up to him. This could all be a big waste of time if he refuses to stretch and wear his AFOs. At 17 he has to learn that he does have… Continue

Added by Susan Rathfelder on July 31, 2008 at 7:10pm — 1 Comment

The Saga Continues . . .

Just when we thought we were done with the whole casting process the Dr. wants more. Even though Jon’s heels touch the floor now his foot still drops when he lifts it. So back we go for more casting. At first he refused, but a new video game is a big carrot to dangle in front of a 17 year old boy. So he ultimately agreed. Then I get home and see that the authorization expires today, now I have to get that extended. I also still have appoints with the Cardiologist, the Pulmonologist and an OT… Continue

Added by Susan Rathfelder on July 9, 2008 at 12:54pm — 1 Comment

Cast Free!

Jon is cast free, at least for now. The therapist wanted to recast his right foot to see if she could get a little more stretch out of it, but because he has a pretty decent case of heat rash she decided not to. She did make him promise to wear his AFOs as much as possible so he can keep the range we got. He can get both feet to neutral, pretty good considering we started with a 20 degree foot drop. So now we have to encourage him to stretch and wear his AFOs so we don't go back to where we… Continue

Added by Susan Rathfelder on July 2, 2008 at 9:00pm — No Comments

Adventures in Serial Casting . . . Week Three

We are down to one cast. Yea! After much discussion the therapist decided that as long as Jon wears his AFO and promised to stand up for a few minutes several times a day she would only cast the right foot. He is trying, I think he is starting to understand the benefits. She really laid out his options and his other therapist said she would not hesitate to send him back for casting again if he started to tighten up again. The mention of surgery really got his attention. We go back next… Continue

Added by Susan Rathfelder on June 27, 2008 at 2:47pm — 1 Comment

Adventures in Serial Casting . . . Week Two

So far so good!



The Physical Therapist took his casts off yesterday and was very pleased with the results so far. His left foot is almost at neutral and hopefully this will be the last casting of that foot. His right leg did show improvement also and she thinks it will only take two more rounds of casting. Yea! This has been so much easier that we imagined. She was encouraged to hear that he was able to get up and walk around the house, that means he won't lose any walking capability… Continue

Added by Susan Rathfelder on June 20, 2008 at 6:06pm — 1 Comment

Adventures in Serial Casting . . . Week One

I don’t know if we made the right decision or not but it is the one we have made. I am not sure if Jon really had a say in the decision, but he is going along with it. Of course there was a bribe and what 17 year old boy would say no to new video games. A small price to pay for what we hope will help him walk longer, and with less risk than heel cord release surgery. We also reminded our dear son that if he had done his stretching and wore his night splints we wouldn’t have to do this.… Continue

Added by Susan Rathfelder on June 15, 2008 at 5:39pm — 1 Comment

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