trials

The truth about trials was the topic of a recent sermon at church.  It couldn't have come at a better time.

Our pastor said, "God works in our lives through difficult trials to accomplish His purposes and bring us to a mature faith."

I'm expecting to become extremely mature very soon.

My mitochondrial disease continues to get worse, yet I haven't been able to see the specialist since last June.  We are still awaiting a biopsy result that should have been done by December (for the December appointment that never happened) but unfortunately the order was never put it by someone.  Meanwhile, my muscle weakness has progressed to the point that I can't do a single sit up.  I tried so hard.  I used every muscle I had, tried willing myself up and still... nothing.  A few minutes in the garden cutting vegetables caused so much pain in my legs that it took four days to recover.  Crazy!!  The muscle pain I felt from that was similar to the pain I had after walking in the Breast Cancer 3 Day.  Just from a couple of minutes of straining.

Trials are to be expected.

The disease is progressing, I can accept that.  I try to push forward but when we look back and realize that a year has passed and we have missed out on so much we lose hope.  A lot of hope.  Hope is what keeps me going but when there are no answers, no cures and no improvements what do I have to hope for?  A miracle?  Yes.  A miracle.

"Trials defined:  Hardships which God either permits or causes in our lives to accomplish His purposes, if we respond in godly obedience."  So instead of saying, "Why Me?" I need to say, "What are you trying to teach me?"

I received a letter from insurance with two denials for care and one very large bill because somehow authorization for something had never been submitted.  So they leave the bill in my hands.  All because one person didn't not do her job... again.

Joy is to be our response.  And it is my response because I know that I am not in control.  Obviously.  I wouldn't wish any of this on anyone.  God's plan is to be trusted and that is what I am doing.  I am trusting that good will come from this.

Wyatt's ENT has said that she needs to preform a procedure where she goes into his throat to see what is causing him to have such severe episodes of croup as frequent as they are and as old as he is.  She speculates that his coracoid is malformed but needs to go in and see.  I have been putting this off for a year now but with the three most recent episodes he had, ending us in the ER, I know it is time.  I just can't bring myself to put him through any unnecessary testing and especially putting him under anesthesia.  That is my biggest fear.  I know I need to trust in Him but as his mother it is so hard to do that.

When I feel like I can't take anymore, I am shown that I can.  I am handed a child with a horrible case of the stomach flu.  This is one thing I cannot handle.  At all!!  It has lasted five days!!!  And just when I think how funny His timing is and we are going to survive, another child wakes up with a tummy ache and fever.  Seriously??!!!  I keep telling Him I CAN'T handle this.  I really can't and for some reason I keep getting trials thrown at me and for some reason I do get through it.  It leaves the days dark and the nights long and all I have is hope that we will pull out of this.

Count it all joy when you fall into various trials. james 1:2  I live my life in joy and will continue to live my life in joy.  There is so much beauty and love that surrounds me daily and I couldn't be more grateful for it.  Yes, I have been handed some icky trials but I will grow from them,  I will learn from them and apparently I will mature from them :)  I am so grateful for every part of my life.

There will be rain but there will also be sun and some days... there will be rain and sun together!

You know what happens with rain and sun?  Rainbows.

surgery

First of all I would like to thank everyone for their warm wishes, prayers, text messages, phone calls, e-mails and most of all, love!!  Every time I felt so alone I would check my phone and realize I was not alone. Thank you!

I was going to write this post yesterday when I got home from the hospital but I thought twice since I was so looped up.  It would have been funny though.

I was scheduled for a laparoscopic surgery after an ultrasound revealed a few growths inside of me and to explore where the pain was coming from.  You can read about that here.

I have had so much anxiety the past week about this procedure and was ready to cancel so many times. I cried {hysterically} more times than I can count and when Anthony came down with the flu the day before I didn't think I could handle anymore.  Nothing was going as planned and I was freaking out.  I am so grateful for my friends and family that listened as I told them all my irrational fears since I couldn't go near my husband who was supposed to be my rock.

My mom took me to the hospital which I was extremely grateful for.  She's the only other person I will let help me in the bathroom.  As soon as we arrived at Palomar {the new one} we got star treatment.  We were escorted up to the surgery area and met with a volunteer to go over a few things.  Right away a nurse came out and got me.  I said good-bye to my mom and started crying.  Not a huge surprise.  The nurse gave me the best hug and told me everything would be ok.  She took me to a really nice room and another nurse came in for another big hug.  She was so wonderful!!  I got comfy in my bed and they brought my mom back in to sit with me.  Since I have "so many rare diseases" as the doctor kept telling everyone, they were taking extra precautions.  I did have a hard time regulating my body temperature and when it went up to 102 they removed my comfy warm blankets.  My fever never did go away.

The anesthesiologist came in and was by far the best one I have EVER had!!!  He was so on top of everything.  He was a little disappointed that he didn't have a heads up on my case because he needed to double check on the types of meds I can use.  I gave him the recommendation from my neurologist and for the first time, I had a "normal" wake up.  I still shook but I wasn't having the usual uncontrollable convulsions followed by a body temp drop to 95* and then a 5 hour stay in recovery just trying to wake up.  This time I woke up feeling pretty good.  Still had a fever but I was happy I didn't get hypothermic.  Never felt nauseous and was actually really hungry.  I love Zofran!!  And I love Demerol. 

The doctor came in and told me they removed 2 or 3 {I can't remember} cysts from my left ovary and she removed adhesions and scar tissue {from the hysterectomy 4 years ago} from my right side.  The masses in the liver are deep in the tissue and she can't see them with out cutting it open so I will be seeing the GI specialist in a month.  I am praying that we can monitor them through imaging and just leave them alone because I really don't want to have another surgery.  It kind of hurts.

The nurses, volunteers, staff and doctors were all so wonderful.  The hospital was great and I am going to go back to check out the cafeteria.  I heard they have a nice patio.

I came home and soon after my babies were brought back to me.  They stayed with me in my room since Anthony is still in quarantine.  I haven't had a chance to catch up on my t.v or do my crocheting but the rate that I'm healing I think I will have plenty of time.  

The pain meds wore off later in the evening and then I remembered I had surgery.  I was so uncomfortable and of course I didn't fill my prescriptions.  I didn't think I would need anything stronger than ibproferen.  I fell asleep and Wyatt woke me up at 3:00 to tell me he was scared.  Talk about feeling helpless.  I told him to go back and lay down and I would stay awake so he had nothing to be scared about.  It took some coercing but he finally did.  I kept my promise and stayed awake. Until 6:00. The kids woke up 50 minutes later....  The pain was so bad but I didn't want to wake anyone so I dealt with it.  Anthony's fever is gone so I think I might welcome him back to our room for some help.

Thank you again for all of the support and prayers.  You guys were my cheerleaders and we did it!  We are on the road to recovery now and I couldn't be more grateful!!!!!

health update

It's been a while since I have taken the time to sit down and write. I miss it. The kids are lying in my bed watching Full House and since I have seen this episode (15 years ago) I decided to take the time to give a little update.

I am going in for surgery on Wednesday. Ok, I will back up. I have been experiencing pelvic pain for several months. After trying a couple different things I finally had an ultrasound. The first ultrasound showed nothing which left me feeling so defeated. I knew I had pain but not knowing what was causing it was so frustrating. My doctor referred me to a gynecologist to further investigate. I mentioned I had been having some abdominal pain which I was sure was constipation or gas. After an examination she determined I would be needing a laperscopic surgery to take a look inside and see what was going on. I've had a few of these procedures before and wasn't too pumped on the idea of being put under. Especially for gas. I had another ultrasound, both a pelvic and abdominal. I left the imaging center a little frustrated because I didn't feel the tech was very thorough. Not that I know much about ultrasounds, actually I don't know anything and when looking at the screen I kept looking for a baby. Didn't find one. The process was supposed to take 30-45 minutes and I was back in my car less than 10 minutes later. A few days later I received a call to schedule surgery so I went ahead and put it on the books for the following week. After hanging up I wondered why I was having surgery.... So I called back and spoke with a nurse. She read me the radiology report in her sweet upbeat voice, telling me that there was a growth on my ovary and two tumors on my liver. Except that she used all medical terminology so I had her spell each word so I could look it up later. Huge mistake. When will I learn to not google medical symptoms or diagnosis'? The doctor called me the next day to explain that she will go in and remove what is on my ovary and take a look around to see what else might be going on. She said that I will need to be referred to a GI specialist after my recovery so he can take care of my liver. The tumors on my liver aren't an emergency and could wait a month but they will continue to grow and possibly rupture so they need to be taken care of.

So there you have it. I haven't been writing because I have been busy growing things in my body.

The idea of anesthesia freaks me out. The idea of feeling pain for a few days, freaks me out. Knowing that my body won't bounce back the way it should makes me nervous for what's to come. While I am looking forward to staying in bed, catching up on t.v, reading, and getting rest, I'm not looking forward to the discomfort of walking to the bathroom or any discomfort for that matter.

"There was never a night or a problem that could defeat sunrise or hope" B Williams

The day she turned 8

The sun rose and awakened my body.  It filled my heart with warmth as I looked over at an 8 year old girl standing next to my bed with a grin reaching ear to ear.  Happy Birthday, Alexis. 

When I took the dogs out I was greeted with this view, snapped a shot and shared it to Facebook and Instagram.

Happy Birthday to my beautiful daughter.  You are the sunshine in my life.  You are the rays of light that shine in my heart.  You are the gift from God that made me a mother.  You have blessed our lives with more love and joy the past 8 years than you will ever know.  Happy Birthday!

As requested, Alexis got breakfast in "bed" (sleep over in mom's room) with her American girl doll.

The above photo is a mother/daughter charm bracelet and below is a pink cross with little pearls that she wanted.

After breakfast and presents we headed out in San Diego's storm of the year and went bowling

 With cousins

Twins

Anthony's twin Dominic and his wife Julie and my twin Leslie with her husband Alex

 The sky was so amazingly beautiful on our drive home

When we got home and the skies cleared we saw so much snow on the mountain.  Proof that it snows in San Diego.

We had a wonderful day filled with so much laughter and family time!  

Happy Birthday Alexis!

8 years ago today

8 years ago today it was pouring rain and cold outside.  Anthony was at work and happened to get himself in the newspaper while doing a swift water rescue on a couple that was stuck in a flooded area.  I was pregnant and "nesting" as I dragged my mom around town to every store to make sure everything was done.  I wasn't due until January 20th but something was telling me I needed to get a pedicure, stock my fridge and grab a few things from town.  With each stop we made my mom was begging me to slow down, relax and saying ridiculous things like "this can all wait."  The weather was actually bad for SoCal.  While in the produce section of the grocery store I leaned over the cart and had a huge contraction.  Not thinking too much of it other than maybe I did need to take a break, we kept shopping.  We went back to my house and had a nice salad and I drank about a half gallon of water.  Again, still in complete denial that I would go into labor this early.  I sent my mom home even though she asked to stay the night.  I assured her I was FINE and sent her on her way.  You see, she didn't want to have to drive back in the middle of the night.  Fast forward to 2:00 a.m (December 30th) and I awoke to a pop and then my water broke.  I called Anthony and told him what happened.  I also said my contractions were 1 minute apart but they didn't hurt much at all so I'm sure I can wait until he gets home at 8:30.  He said ok and went back to sleep.  I hung up and cried.  Called my mom and heard something on the lines of "I told you so" and the reassurance that she was on her way.  Anthony called back about 2 minutes later and I was still crying because I didn't want to be alone.  An hour later he showed up with his partner and we gathered a few things and hopped in the ambulance.  (I got to ride shotgun)  We got checked in and Anthony told me he would probably have to leave.  Thankfully he didn't.  Someone came in to work for him and it all worked out great.  I quickly pushed out a healthy baby girl as the doctor was running in.  

Today Alexis celebrated her birthday with one of her friends.

First stop was the nail salon

I was inspired by this craft on Pinterest (I'm not sure where craft ideas came from before Pinterest)

 Make a wish beautiful, I'm making one for you too!

Tomorrow morning she has requested breakfast in bed with her American girl doll and bowling with the family.

I'm looking forward to celebrating 8 wonderfully blessed years with the girl that changed my life forever and made me a mom.

Merry Christmas

Christmas time

A time for feasts

A time for laughter

A time of beauty

A time for family

A time for love

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Christmas Day

This guy had to be woken up by us after his 3rd night in a row not sleeping much from his croup.

Waiting patiently for her present

The reindeer helped themselves to the carrots from our garden.

A beautiful Christmas sunset 

Merry Christmas to all and to all a good night!

playing catch up

Thanksgiving... a beautiful day surrounded by family and food.

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We got fancy with our Christmas card photo this year.  Sitting around one evening I told everyone to comb their hair and put on something that didn't have holes in it.  I set up the tripod, grabbed the remote and just like that, a family photo! 

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I had an appointment down at UCSD with an Infectious Disease specialist.  We basically had to rule out any type of infection that would have caused the fever that lasted all summer.  The mystery was solved when the weather cooled off and now my body temp is 96*.  My body just can't regulate it's temperature so when it's hot outside, it's hot on the inside and when it's cold outside, baby it's cold in here.  Anyway, while sitting in the waiting room I started reading my Readers Digest (I brought with me since I am such a germ freak and can't touch anything in a doctors office) and this is what I read.  Not a good idea.

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Wyatt turned 6 years old!!!  

He invited a few of his friends over for some breakfast and then Anthony took them on a hike.  Wyatt's dream day.

To finish Wyatt's birthday, we went to the Fire Station for the annual Christmas party.  

I've got a lot more to share so stay tuned to more posts coming soon :)