Then hope comes

After the run in with Dr.Heaney, it took about a week to pick ourselves up and carry on. We finally realized that our trials and tribulations are nothing compared to others. We have much happiness in this life and our suffering is nothing. We found joy again and peace in our situation, we have a hope and the strength to carry on. We keep pressing toward the goal each day and readying ourselves for the future. Marty is feeling better, his health is greatly improved from the previous months. He is getting better treatment and getting things under control. We are so thankful for the prayers of others and can definitely feel them. We are praying the transplant comes soon! We are tired of waiting and ready to be done. We have family events coming up in the fall and we want it to be over before then!

When everything comes crashing down

Sorry it has taken so long to update, it has been a rough few weeks in our house. It all started the day before New Year's eve. I will do my best to update you all on Marty and his condition, along with other happenings. Marty didn't want to go see Doctor Heaney the day before New Year's eve. He just said," Why? so he can tell me more bad news?".

I assured him that his blood work was improving, or so we were told by the dialysis nurses and nothing bad would happen. So when we heard Heaney yelling at his staff and patients before us, we laughed as usual. But, when he came in the room telling Marty " I don't think a transplant is a good idea because you are non compliant." We looked at each other wide eyed, silently thinking "Is he talking to the right person? does he have the right chart?". We asked him to clarify and he said, " You are non compliant and have been for months." To say that we were shocked was a understatement.

 I noticed he had old bloodwork, which caused him to go scream at his staff and come back in saying, "it really doesn't make a difference." it was probably the worst experience of this whole ordeal. His bad mood, caused Marty to crumble, me to cry, his staff to pull me aside and try to do damage control.

What a mess! Basically, it comes down to the fact Marty's phophorus level was high as was his hemoglobin A1C. He tries to keep those levels down but it is a hard battle. Cheese is everywhere and it is hard to avoid all dairy products. His blood sugar is tough, with the dextrose in the dialysate it is hard to keep down.

Anyways, he is trying harder to be aware of those things. So basically, Dr.Heaney cannot change his transplant status, he was using it as a empty threat. He has nothing to do with the transplant or the process. We are already listed and it is up to Stanford to decide that.

 On top of that, he had a sore on his shoulder. We think his vest from work rubbed a zit and infected it. So he had to have it drained and packed, antibiotics and was very sore. On top of all of the above. As of this week,that has finally healed and no more dealing with that.

 His blood work this month came back even more improved. He still canceled with Heaney this week because he was not in the mood to see him. The social worker a.k.a waste of insurance money called yesterday. She basically told us we need to decide what to do and they hope to earn our trust back. She gave me no options as to what can be done to rectify the situation with the doctor. I get tired of her calling, because we don't need her help and then when we do, she doesn't help.

 We are praying for this to end soon. We are weary and really need to be done. We have life to live and tired of life being on hold. Tired of the battles with doctors and staff, tired of dialysis and tired of medicine. We are just tired.

Conner says, " I will read your blog to check!"

Conner is not wanting me to share his funny things anymore. Marty likes me to blog them, so we can remember them. He is so funny and says the funniest things, that make us laugh hysterically. Two days ago, he said, " you mess with the hairspray, you get the hairstylist!" and he said something else funny but told me I could only share it with Andrea. He really doesn't mean to be funny, his brain mixes things up. It gets upset when we laugh, but we told him it brings us joy and happiness. We are thankful for his funny little mix ups. I hope he always does them and doesn't outgrow it. I will be sad if he does and his dad will be also.

Circus boy

Conner has informed me, he wants to join the circus. He means it!

Conner has become very interested in magic lately. He has been learning slight of hand and illusions. He can do some pretty impressive tricks and little kids love him. He keeps looking up unicycles on Ebay and is working tirelessly begging Marty and I for one.

Then yesterday he announces, " I want to join the circus when I am older.", I told him that it isn't really a good profession of choice. He told me, " I don't care, I will have my own trailer for you to come visit."

Finally yesterday afternoon, he told me that he will still go to college to learn business. Then he said he will go to bible college to become a ordained minister so he can go do a one man act in churches.

It is true, he is a one man act. The kid cracks us up, he is so funny but he doesn't mean to be.

Comments please

 

Lately, I have been noticing a lack of comments on this blog. I know that I have followers and a number of readers but nobody comments. I have been wondering why the past few days and today found out part of the problem. My email notifications have not been coming through to my email account and there were a number of missed comments. I enjoyed reading them and it was a perfect surprise on a Monday morning. I have been toying with the idea of using the new Disqus commenting system. It allows you to sign in via many different sources and not just blogger, but I am not sure after this morning's developments. Comments make the blog, it helps the write feel motivated to write, and it adds something to the experience and brings enjoyment. I hope that in the future you will leave me a comment and let me know what you think.

 

I am trying a new thing with this blog; I am blogging straight from Word. I hope this works out and makes formatting a little bit easier.

 

Just Jules

So I must do the perfunctory New Year's resolution post and tell you all my goal for 2010. I am not big on resolutions, for the most part they go by the wayside. But this year I know this is something that I must do.

I worry way to much about what other people think of me. It is not good and I am going to stop doing it. Worrying in general is a problem and I am tired of it. So 2010 will be a worry free year, it will be hard but I am working on making permanent. I don't know how it started, I think it is a common struggle with people. I used to not feel this way but it has crept in over time. It is time for it to go!

I am just me,being me and that is all that matters. If you don't like it, don't know me. Certainly, I am not looking for a license to behave badly or hurt others. Of course, I want to know if I am doing something wrong, tell me be honest and I will listen. But, I am not going to worry if I don't hear from somebody or if someone acts funny toward me. I am not going to worry about fitting in, I don't need to fit in. I hope you catch my drift, if you don't..........I won't worry about it.

I have a song that I feel fits me, I am different always not fitting in. I am not one to go with the flow, I often have gone against the grain. Not on purpose, just because that is how I am wired and really I embrace my weirdness. I like being different, not fitting into the cookie cutter mold of society.

So here is my song:

pure joy

 ²Consider it pure joy, my brothers, whenever you face trials of many kinds, ³because you know that the testing of your faith develops perseverance. ⁴Perseverance must finish its work so that you may be mature and complete, not lacking anything.

I had a epiphany of sorts tonight, I am deeply thankful and full of joy. Yes, we are facing a difficult time in our life. But, it could be so much worse and we could be suffering greatly. I am healthy, the kids are healthy, my husband has a good job with great health insurance, we have a nice home.

Above all, we have a love that knows no bounds. A deep, faithful, abiding love that many people never feel in life. We have happiness in our home, something I longed for growing up. I have the life that I always dreamed of having as a young girl. 

My husband loves me, he is faithful, supportive and understanding. We have grown in our love and are so close. Even if he is sick,that cannot and is not taken away. Even if he dies, that will never leave and I will have loved more in this life than most people.

He is a good father, the kind of dad many kids wish they had. The kids adore him and he adores them. He makes sure they know they are loved and special.

People come to our home and they always comment on how relaxing and peaceful it is here. Our home, no matter where it is has peace.

Above all we have a faith in a mighty God, a faith that has been tested and stands firm. We have faith that we will be together forever.

So, I now see that I can face this with pure joy and thankfulness.

Guest writer: Elizabeth

Yesterday Conner pranked his sister and it wasn't pretty. He glued this box shut and hid it behind the couch for a month. Elizabeth found it and was very upset, Conner thought it was hilarious. Here are some pictures of the crime:The box

The aftermath

Not funI talked to them about the situation and talked with Conner about his behavior. Elizabeth was very frustrated and rightly so. Conner really can be a handful at times, he doesn't realize what a bull in the china shop he can be. As therapy for E's frustration, I suggested she write about the problem and her feelings. What came out was fantastic and I asked her if I could share it, she agreed. I hope you enjoy reading her story. It is posted exactly as she wrote it.



my life with a 12 yr. old brother . By Elizabeth Timms


Hi my name is elizabeth im 9 yrs. Old I have a 12 yr old brother He tortures me like today I found out he had glued my little jewelry box and hid it behind the couch for a month oh… just wait my story has just begun I am afraid of vomiting so my brother decided to tease me about itSo he pretends to gag in my face.You won’t belive me how much Me or my brother go into my moms room a dayI can guess about 10 times a dayOh yeah he said that he is the best prankster in the world.He gives me wedgies about every day.Did I tell you he pushed me off the couch See what I mean!!!!!!Even my friends think he’s mean.Recently my brother just lost his phone and it was in the house.And guess what he put it on silentHaHaHa!!!!!Oh so so funnyOh bye the way he even tortures my dog maxOh every thing I get either he takes or breaks or hides it .1# thing nice about he’s nice to me when im sickBut besides that he’s mean so yeah yep So you have pretty much have read what he has done to me I’m not done yet . Like today he drew on my pants with with marker( my brothercan be a hog sometimes)Last year we got a wii from my mom and dad for brother to share well I got an ipod for Christmas and for about an hour I was playing with that butFinaly I decided to play well my brother was playing but when I decided to play I asked him and guess what he said no so I told my mom she said to give it up.

Well that’s the end of my story . THE END.

Ps. (title) lesson learndI have a verse that I thought of when you have brother rivelry.Proverbs 15:1 ESV / 4 helpful votes A soft answer turns away wrath, but a harsh word stirs up anger. Proverbs 10:12: 'Hatred stirs up dissension, but love covers over all wrongs.' Whoever keeps his mouth and his tongue keeps himself out of trouble. (Pr. 21:23)Starting a quarrel is like breaching a dam; so drop the matter before a dispute breaks out (Pr. 17:14)Do everything without complaining or arguing (Ph. 2:14)

I love when my kids say funny things.

Tonight Elizabeth was eating a orange that we recently bought at Costco. I noticed it was pink in color, it almost looked like a grapefruit. I tasted it and wondered aloud "What kind of orange is this?" so she ran to look at the bag, came back and announced "It is a Cara Cara, pink na-vell" pronouncing navel as na-ve-ll. It was so funny! Conner asked me if I was going to Dap something tonight. Dap is a caulk brand, but really he meant dab. Last week, Elizabeth found out if you take the Crystal Light container and put it to your heart it sounds like a stethoscope, but she called it a "stella otho scopis" instead.