Thursday, June 28, 2012

Whats the delay?

Whats the delay? We had it all planned and this isn't the way it was supposed to be.
My mom was scheduled to start on a very long day of chemo. They admitted her the night before so they could start this process early in the morning.
Well delay happened. Due to some communication issues my mom didn't get started on her treatment until very late in the afternoon. It was a longer process then normal because she had a negative reaction to this medicine before and they were being extremely cautious with her to help keep that from happening again.
They started off with an extremely diluted amount of chemo then over the course of 8 hours they would slowly increase it until finally it would be at around 90% strength.
 We were all a little nervous and knew that if she was going to have a reaction it would probably be with the last round .  My moms night nurse came on around 7:30 p.m, by the time he got there they were only on the 2nd of 4 bags of chemo. He came in, checked everything out then went back to get caught up on all her medicines ect. As the evening went on I noticed he was different then all the other nurses my mom had. Aside from being very quiet, gentle and kind, he was very attentive to my mom and  he was very organized and  was prepared for anything. I felt a calm that I had not felt all day thankful that he was the one to be on duty during that last bag of chemo.
At around 9:30 p.m. they started the last bag, thankfully it all went smoothly.  All through the night as we were trying to sleep he would come quietly come in to the room to check on my mom, add more medications and then finally her final drip, a unit of blood.
As mom and I woke up early that morning  we talked a little of the previous day, my mom was relieved  to have it behind her and yet still a little frustrated that the process took so long and was delayed so long. We then talked a little about our night nurse, We both agreed that he was by far the most  efficient of all the nurses she had during her 2 day stay. He came in, took the time to make sure he understood  her situation and took the time to explain everything he was doing. He organized medications so he knew exactly where everything was in case he needed it in a hurry.  I told my mom that I thought God must have delayed her chemo so that she would get him for the final process. God wanted that nurse to be on guard, to watch over my mom during that final chemo ! God trusted him to take good care of mom, and for that we could see the positive of the delay and the frustration of the day before turned into thankfulness.
I know we have all said or heard the saying "everything happens for a reason", while I believe this to be true, there are many times that we don't ever know the reason why things don't go as planned. This was one time that I am thankful that God let us see the reason for the delay!
What about you, Any situations that you were able to look back on and have that "ah-ha" moment of understanding of why that happened the way it did?

I have to add a PS to this post.
My mom cracks me up. This morning when they brought my mom her breakfast tray she lifted the lid on it, picked up the waffle and said this is gross. She then proceeded to through half of it in the trash because she didn't want to hurt their feelings that she didn't eat it!  Then she said, oh I am sorry am I being difficult! I had to laugh, first of all NO she wasn't being difficult but after all she has gone through over the past 6 years, and what she had gone through within the last 48 hours, I think she MORE then earned the right to be a little difficult don't you? My mom! Always worried she is going to hurt someones feelings!

Thursday, June 21, 2012

Newsflash, Jeff and I don't think alike!

I am re-posting this from last year, in honor of Jeff on fathers day. God knew even before Ryan was born that he would need  a unique father. One who was creative, could problem solve and come up with unique solutions. A father who at times, would be able to set aside emotion to be able to make hard decisions. I know God gifted and created  Jeff in such a way. He created Jeff to be the perfect father for such a difficult situation,  not only Ryan but for all four of our boys. I know I don't say it near enough but Thank you Jeff for everything you do, everyday for us!

The following is a re-post from last Fathers day;
 News Flash!! My husband and I don't think alike! I know that is a shocking revelation! We have been married for 28 yrs and I still am figuring this out.
This was once again brought to my attention when a few days ago the question on my morning radio station was  " What is love and how do you see people living out love for those around them".  That got me thinking about those in my life,  my husband came to my mind.
Over the past 10 years, since Ryan was diagnosed with Duchennes , Jeff and I rarely talk about the disease and what it means. It is the ever present "elephant" in the room. We know it is there but it is hard to talk with someone who is as close to the situation as you are. Yet I would try to get him to open up,  of course without success. I would become frustrated and angry assuming he just didn't care. I thought he was just ignoring it, baring his head in the sand. Well God recently opened my eyes to see Jeff  in a different way. While I deal with the tears and most of the everyday care taking of Ryan, God brought to my mind a few unique ways in which my husband is showing his love for our son;

-Flew to California to drive back an affordable wheelchair accessible van that he found online.
-Completely gutted and remodeled our basement to put in a wheelchair accessible bathroom.
-Built Ryan a wheelchair friendly garden box.
-When Ryan had spinal fusion surgery, Jeff sat beside him  day and night , very rarely leaving the room.
- Made little blocks that we can take with us to restaurants to put under the table legs to make the table high enough so Ryan's wheelchair can fit under it.
-Welded together and made a type of homemade lift so that Ryan could get in and out of our backyard pool.
- Spent hours, days pouring over deck books, writing up plans and re-writing plans for a  new wheelchair ramp/deck to build so Ryan can once again come upstairs, something he hasn't been able to do in over a year.

These are just a few of the things he has done that I just took for granted and as I said recently God showed me THIS is how my husband deals with the disease. He is a fixer and while he can't fix Ryan , take away or stop the progression of the disease, this IS something he CAN do. It is HIS way of showing love to Ryan. Different from mine, as I said we don't think alike,  and that's okay!

jeff building a flower box for ryan
Taking apart the old deck

Thursday, June 14, 2012

My simple little mission.

My mission, whether or not I want it, to get modifications done to Ryans wheelchair. Starting time frame of this mission, Oct, 2011.

Sounds easy right? It all started in October of 2011. Ryan was getting bigger so he needed modifications done to wheelchair so that he could sit correctly in it. We made  an appointment with his physical therapist and had the vendor from the local equipment place come. Appointment was quick, got everything down on paper that he needed . They would write the letters of justification, stating why Ryan needed these changes to his chair, contact his doctor for a prescription,  and do all the paperwork. I was so happy that it was being done for us and I didn't have to do anything. It would all come together, right?

December 2011,  no phone calls yet. I knew insurance companies aren't fast about anything so figured I would give it till January 2012. January came then February.  To be honest with you I didn't want to mess with it and was hoping that it would all come through without me having to intervene.

 March of 2012 I decided I better figure out what was going on. It does take a while but not usually this long. So i called the Vendor. They had no idea what I was talking about. They had never received  any information for any of this! Someone... somewhere, messed up!  We had to start the process over. So back to the PT, wrote everything up again and I was reassured it would get done.

 April went by, then May, still no information.  I was getting rather frustrated at this point so I called the vendor . They had  the approval from the insurance for everything but 2 items that were denied,  the seat back and the hardware that was needed to put on Ryan's new leg rest!  I asked " why  was I not notified of this?"  Plus how can the insurance deny the hardware needed for the leg rest and Ryan's seat?!?  More letters written, approvals needed, letters of justification, doctors notes, quotes for the items etc.

 End of May, I made the phone call again. She said "yes, we got the parts in , the shop will call you to set up an appointment after they double check to be sure everything is  there." " Finally !", I thought!   Well of course I was wrong, 3 weeks go by and no phone call. I  called today, middle of June. The girl I talked to said we have it all except 1 part that we are waiting for  Ryan's doctor to write a prescription , she said she sent the fax to the doctor last week. Ryan's doctor is usually pretty fast about getting these things in so I asked about the doctor. She said the doctors name and it wasn't even Ryan's doctor. They sent it to the wrong doctor! OKAY , I am in tears at this point. I call her boss, I tell him everything that is going on and finally at 8:00pm tonight he calls me back. Even though we are waiting for the one item they are going to get everything else put on his chair next week.  Finally after 8 months of  waiting do I dare believe that my simple little mission is finally over?

Wednesday, June 6, 2012


A friend of mine lost her 14 yr old son to Duchennes  and asked that we all help to spread the word that a cure needs to be found. So I am telling my story to help you understand what having a child with dmd is like, and why the urgency is needed for an effective treatment or cure to be found.

Most boys with dmd are diagnosed when they are around 4. Until that point you really don't notice very many differences between your son and other boys.  Ryan was 4 1/2 when i started to notice little changes. He was having a harder  time getting up off the floor , climbing steps and keeping up with his older brothers. He  start to complain about being tired. I took him to the doctor not really expecting anything to be wrong, until the  phone call from the doctor came  that changed our lives forever. The doctor says" I am sorry, your son has Duchennes Muscular Dystrophy. there is currently no treatment or cure and it is 100% fatal".

When your sons is diagnosed with Duchennes you are given details about what his life will be like with Duchennes Muscular Dystrophy.  I would call it a "blueprint" laying out exactly what his  life will be like.  At first you think, well we are going to be different.  God is going to keep Ryan strong.  Ryan won't be like all the others. Then year after year you watch as he is marking off all the milestones on the" blueprints", you try to maintain hope once again that God will intervene, that a cure would be found and yet he stops walking.  Each birthday comes with mixed emotions. Birthdays are a time of celebration, celebrating another year older, another step towards being independent.  For us birthdays are different, hard. Yes you are thankful for your son and yet you realize being another year older means 1 less year of life. You look back at the past year seeing all the changes he has made and know , thanks to the "blueprints", that the coming year will mean helping him to deal with more loss. Ryan is almost 15, an age most boys are starting drivers ed., looking to buy their first car, starting high school and spending more and more time with friends.  Ryan will never drive, in fact his wheelchair costs more than a new car.  According to the "blueprints", we will be lucky if he lives to graduate high school.

God has not chosen to heal Ryan at this point, he is allowing us to go through all the struggles, pain and difficulties , he has not sheltered us from any of it. Ryan lost the ability to walk at age 10,  just at the age the "blue prints" said he would, Ryan ended up needing back surgery at 13 yrs old just as  the "blue Prints" said he would. Now we know, thanks to the "blueprints" what we have to look forward to next.

While God has not healed Ryan let me tell you what he has done. He has been with us every moment, every step of the way.  Even though at the time we felt very much alone I can look back and see very specific ways he showed us he has not forgotten us. He has changed me in a way that I would have never been changed otherwise. He has opened my eyes to see people in a different way, to see the hurt and pain that others are going through and has given me compassion that I never thought I could have. He is continuing to change me as I struggle with selfishness.

God is with us and has used dmd to change us in ways we couldn't have imagined , yet I  will never stop praying for a cure. Duchennes needs to end, no one should have to watch their son  go through what our boys have to go through.  I do know that a cure is not Ryan's only hope.  God is showing me that  this world  is only temporary, only a stepping stone  to something greater and eternal with him in heaven forever!!   THAT is the only thing that gets me through some of the more difficult days ( and there are many of them). Knowing  Ryan has a forever home in heaven that we don't have to try and hold onto this life with everything we have, that a life much better, less painful awaits all of us . THAT is truth!  While I don't have what you call scientific evidence that God exists , I do have the strength to face each milestone as they come and while they are very difficult they do not destroy us. We have the strength to get up out of bed knowing what the "blueprints" say will come next, THAT is how I know that God is real!

Monday, June 4, 2012

Power Cooking, all in a days work.

Power cooking. I used to do a lot more of this when all 4 boys lived at home. Here is what I made today.

Chicken& noodles with mashed potatoes, Meatloaf with twice baked potatoes, Porcupine meatballs with mashed potatoes, Chicken riggis, Burritos in a  jar ( thanks for the recipe pinterest), Chicken chili,cut a roast in half for carne asada and the other half for beef stroganoff with noodles.  I think that about covers it!

Just a hint if you ever want to try this. I shopped for all the ingredients a day ahead of time, and then cut all the vegis that i would need at one time. I cooked 3 whole chickens to use the meat in 3 of the recipes  and then put the chicken broth into jars to use as I finish the preparations the night of the meal.  I also clean up as I go, washing pans and using them over again. That way I don't have such a big mess to clean up when I am done.  If you don't want to or don't have time to do all this in one day you can try cooking enough at dinner for 2 meals and freeze 1 of the meals for a later day.
Well I am wiped out but still  have to feed the family tonight. I wonder if I can talk jeff into ordering pizza tonight !! :) 
Have you ever power cooked? what is your favorite things to cook ahead of time?