Tuesday, August 28, 2012

Hurricane Isaac

Thank you to all our friends that have been concerned and texted to check on us. This is a chemo week for Brian, but because of the storm headed this way they delayed his treatments until next week. Since next Monday is a holiday he will have chemo Tuesday- Friday with the higher dosing.

Right now we are just hanging out at home and doing some school work before the bad weather comes.

We didn't do too much extra to prepare for the storm. We live pretty prepared. We have a generator and a window AC unit, so we went and got some gas for those. We always have a stock pile of food because of the way I shop with coupons and sales. I did go buy a huge dog bone so the dog will have something to do when the bad weather forces her to be in the house all day long. :-) We also put the cats in the garage with a litter box so that they don't have to be outside in the wind and rain. We went ahead and brought them in last night because I was fearful they wouldn't come out of hiding if the weather was starting to get bad. One of our outdoor cats is always in our yard. The second one only comes around at meal times. That's the one Miss Ansley is really attached to. So, with the animals secure we are set.

Monday, August 20, 2012

First Day of School

We homeschool our children, but we are also a part of a homeschool community that meets once a week at a local church. This is our fourth school year with Classical Conversations. We have LOVED our community in Pace. So much so, that our CC community has become some of our closest friends here in P'cola. The group has grown so much that a second location was opened here in Pensacola this fall. We prayed, cried and discussed what to do b/c we didn't want to leave our Pace group, but it just made so much sense for our family to move to the Pensacola location. So, today we started our first day with a new group of people in a new location. We do know a handful of families that made the move too.
We got everything ready for school the night before so that we were not late. I was so proud of myself on the way to school for all we had accomplished by 8:30 AM. (Spoiler alert...look out ahead for the train wreck!)
The night before...we are ready!!

I woke up at 6:30 AM and started making eggs for breakfast. (both scrambled and hard boiled b/c I have one that doesn't eat scrambled and two that if they see hard boiled want that kind too, and one that only eats scrambled.) As I am getting breakfast underway, Brian comes out of his room upset that he had wet the bed. He had only had two DDAVP pills the night before and, apparently, he really needs three or he will wet the bed. Brian was totally upset about it. I put breakfast on pause and quick started a bath. Once B was in the bath I ran to his room and started stripping his bed to wash the linens. It smelled like a urinal. It was beyond gross. I am pretty sure he slept in pee for a few hours b/c it wasn't completely wet. (Remember he can't help it...he has Diabetes Insipidus.)

By that point I have laundry going, I have breakfast going, I am getting lunches finished up and I happily decide I will go ahead and scrub everyone in the bath myself. Three of the four had bathed themselves the night before, but I hadn't scrubbed them since Friday, and they still need mama to wash their hair every now and again. I figured for the first day of school we would be squeaky clean.

Everything is rockin' along and I feel like wonder woman. It didn't even fluster me when twenty minutes before we needed to leave, Brian came in without shorts, shoes and underwear, announcing he had an accident because he couldn't get his pants down in time. He, who was already bathed that morning, got cleaned up a second time and we put new unders, shorts and shoes on him. At this point Fred jumped in and made the boys PBJ's for their lunch boxes so I had time to squeeze in a shower. (b/c I spent a good five to seven minutes attempting to get a cute picture of the four.)
We were working together as a family and I was feeling awesome. Super mom, that's me!

Olivia wasn't up for pictures. She busted her chin open last night. She probably could have used a stitch or three, but we cleaned her up and steri stripped at home. We used one of our left over sterile packages from Brian's home health care weeks. It would have been WAY more traumatic to take her to the ER. All our kids know of hospitals is what they see with Brian. I am confident she will be fine or we would have taken her in, but needless to say it was a bad wound.

A couple more pictures at the church before we went inside.

Brian wanted to showcase his lunch box.

We arrive with three minutes to spare. I am pretty sure I called my sister, Jess, on the way to school to tell her how awesome I am.
We found some seats and my friend and neighbor, April Morgan (the director of our new CC community), came up to me and said, "I am going to go up in about a minute and welcome everybody. I will make a couple of announcements..."
As she is saying all this I look at her with a goofy "you got it, girl" smile, thinking she is just chatting with me. I am sure I gave her the thumbs up or something dorky to encourage her. She then says, "and then I will call you guys up to the stage."

Umm, excuse me...WHAT?!

April then looks at me and said, "Oh, did you forget? It's your day for family presentation."

OK, as a matter of fact, I totally don't remember that AT ALL!!!

So, right after April walks away I gave Ansley and William a panicked look and and said, "We have family presentation! WHAT ARE WE GOING TO SAY?!!!" William said he would tell everyone that Bigdaddy was coming home from Africa today. I said awesome!

We got up front and I introduced us and prayed. Then we had to lead the pledges to the Christian Flag, Bible and American Flag. I know all three by heart, but I was so flustered I stared down at the page and read them word for word. I am sure I looked real intelligent. :-) My kids just played with the flags.

Then William stated, "Bigdaddy gets home from Africa tonight." That's it. William was done. Nothing further. So, I jumped in and said why our Bigdaddy was in Africa and a little bit about the ministry there. I then ended our "family presentation" with a quick disclaimer. I think I said, "Hello lots of people we don't know...we just bombed family presentation. Hopefully this shows you that you don't have to do anything awesome. It can't get any worse then this." :-)

After morning assembly the kids broke up into their classes to head to their rooms. I didn't know any of my kids schedules and or where to find them for art or science. I had Brian in tow because he isn't going to be in CC this year. He missed several weeks last year and just doesn't want to participate. So, we are not going to have him in a class of his own, but today he didn't want to miss out on the fun of the first day. He has stated that he will stay home every Monday with Daddy who will just have to work from home. :-)
After a good 40 minutes of dragging Brian all around the campus, and yet another emergency trip to the bathroom AND downing an 8 ounce water bottle in two sips, it occurred to me that I forgot to give Brian his DDAVP this morning!! I felt horrible.The poor boy!!! Yes, that completely deflated my super mom ego.

So, our first day of school was memorable. We had a great time and all four kids have lots of stories to share. Hopefully we encouraged some of the families that perfect is no where to be found. :-)

Friday, August 10, 2012

And Now He Is SIX!

(These are poor quality b/c these are pictures of pictures. I didn't want to tear our scrapbook apart to scan the pictures.) 
The newborn Brian Robert with excited Daddy and Mommy.

The Schreiber crew on Aug 10, 2006.
Ansley, 31 months old, William, just 10 days shy of 14 months, and Brian, a brand new babe.

 One day old and heading home.

One Year Old

Two Years Old

Three Years Old

Four Years Old

Five Years Old

Six Years Old

Thursday, August 9, 2012

Another Year

These are some pictures from three years ago. Just a little blast from the past to show you guys some pictures and try to share some of the emotions and thoughts that Fred and I experience when Brian has a birthday and the month that follows. Brian's birthday's are kind of the mile marker in my mind when I really contemplate everything he is going through for so many reasons. I think Fred would agree. It's a bittersweet time.

  All summer 2009 we dealt with some curious little issues with Brian. (You can read about that with our road to diagnosis post HERE.) August 10, 2009 was Brian's third birthday and just one short month later he was diagnosed. That first weekend we spent the entire three days not knowing what our future held. We could not imagine life without our special gift from God. Because Brian truly is our special gift from God. For those of you that don't know us well, Brian was born when our first child was 2 1/2 and our second child was 13 months. So, rewind six months and I had my hands full with a newly turned 2 year old and almost seven month old. I was tired, gaining weight and lacked desire to anything other than survive. One of my girlfriends suggested that maybe I had a thyroid problem and perhaps I should get that checked out. I made an appointment with my doctor but took a pregnancy test before hand, just in case, although I knew I wasn't pregnant. Without revealing too much personal information Fred had his first back surgery in February 2006. We knew that I was not pregnant. The test was negative. My doctor checked me out and drew some blood. Everything came back fine and he told me that I wasn't 18 years old anymore and I needed to join Weight Watchers. I was so upset. A couple more weeks went by and I had been watching what I was eating. Fred commented that maybe I was pregnant after all. I took another test and low and behold it was positive. We were floored. Assuming that I was newly pregnant and that's why the last test was negative I waited a couple of weeks before going back to the doctor. When I finally went in the doctor, as he was feeling my abdomen, he asked me how far along I thought I was. I said "maybe six weeks." He then said, "Well, you might be having multiples because you feel much larger than six weeks. Let me go get the ultrasound machine." For the next seven to ten minutes I was holding back tears as I imagined life with four littles under the age of three. When the ultrasound machine showed an image of one big baby I was so happy. But I was in shock to hear that the baby looked to be about 14 weeks along. That was a fun phone call to make to Fred. We knew this little one was straight from God. So, fast forward three years from then and we were devastated at the thought of our unexpected surprise being taken from us. I wanted so badly to really mean it when I said, "the Lord gave and the Lord has taken away, may the name of the Lord be praised." (Job 1:21 b) But honestly, the thought of looking in my rear view mirror and seeing only three car seats instead of four absolutely paralyzed me.
I have spent the last three years learning to let go and cling to Christ. I am sure I will continue to learn that the rest of my life.

 September 23, 2009 Brian had a port surgically implanted and started chemo. I remember when we were handed the large "your child and cancer" binder I wanted to throw it back at the nurse and scream, "We don't need this!!" Brian was just a baby. He had just turned three!!
He completed chemo round one and we had his port removed. Brian's fourth birthday was celebrated port and chemo free, but in the back of our minds we knew something was going on as he was starting to present some of his original symptoms. September 23, 2010 we got the phone call that the pathology report from the biopsy reveled that Brian's Histiocytosis was back. The next day, when Brian had his new port implanted he woke up from surgery extremely mad, and the first thing he said was "What's in me?!" He knew what having a port meant. He knew he hated chemo and steroids. He was just a new four year old. It broke our hearts.
   From that point forward Brian prayed almost daily that he would have "no more chemo when I am five."(his exact words)  We knew that his protocol was going to complete just a few weeks after he turned five so we explained to him that he would be five, but hopefully shortly after that he would be all done. When we noticed his new drugs were not working and his symptoms were presenting again, we were devastated to tell him that he would be doing chemo well into five years old. He switched his prayer to "please let me have no more chemo when I am six." So, in April of this year when we started his new protocol and his third/fourth round of treatment, we explained to him that he will be doing chemo while he is six too. It was really a blow.

When William turned seven a few weeks ago we asked Brian to start thinking about his birthday and what kind of theme he wanted. We talked about his first, second and third birthday's and their themes as he did not remember. He told us that he wanted a chemo birthday party when he turned six because "I will always have to do chemo." That was devastating. Brian does not remember anything other than chemo and doctors and surgeries and medicine. He is so ready to be done. He will frequently make comments about not needing chemo when he is with Jesus in heaven. While it makes our parents heart soar that Brian trusts Jesus and has such a deep faith at such a young age (which is further evidence of God's grace and that everything is from HIM) it also makes us sad that our almost six year old has so much pain.

Please continue to be in prayer for our Brian Robert. He is treasure and it is a pleasure to parent him. We are so thankful to God for His gift to us in Brian Robert. Brian has made his mark and God has used him as an instrument of change in our lives, our marriage and our parenting.

Pray that his sixth birthday tomorrow and the season of remembering is spent with great joy. We have much to be thankful for.

Here are some pictures of our kids a couple of months before Brian was diagnosed. (Yes, we had some aggressive kitty lovin'.)

Monday, August 6, 2012

A great week!!

Or the title could be, "My girls are here!!!"

Here is a picture of mi familia circa 1995. We are pictured with our dear friends that are like family, the VanMeggelens. My dad, brother and Randall VM were about to leave for Uganda and we all posed for a picture before they departed. We have known the VanMegglen's since 1991, when miss Lillian was six months old and sweet Jocelyn was 22 months old. My sister, Dabney, and I were blessed to babysit for these girls. We watched Hannah and Felicity since they were born. I remember when my mom, sisters and I went to meet newborn Felicity Joy. She was screaming her head off and I remember lovingly holding her and telling her she had to stop crying because her name was  happiness and joy.
 Dabney and I had claimed them as "our girls."

Not only did we babysit, travel and spend lots of time with the VanMeggelen's, but Randall was my Bible teacher in high school. I remember the first week of my ninth grade year (which was really, really hard on me) he made me cry as he was driving me home from babysitting one night. He still likes to remind me of that twenty years later. :-)

Here we are rockin' the 90's look.

When Fred and I moved to central Florida in 2007 we were just 25 minutes from the VanMeggelen's house. The girls I babysat were now babysitting for my kids, and Randall and Tina had a fifth daughter that is just 11 months older than Ansley. It is SO MUCH FUN to spend time with their family.

Last October Ansley and Olivia had the privilege to be flower girls in Lillian's wedding.

This week Hannah and Felicity are here in P'cola at our house to visit and help us celebrate Brian's sixth birthday on Friday. It is so special to me that "my girls" have my children as "theirs".
Hannah and Felicity playing one of MANY Go Fish or Old Maid card games. My kids LOVE Go Fish and Old Maid.

We love our VanMeggelen family and we are SO EXCITED to spend this week with Hannah and Felicity!!!!

Thursday, August 2, 2012

Good To Know

There are posters on the doors of the rooms in the clinic that explain neutrophils. I thought it would be cool to add to the blog because it probably explains better than I could. When I mentioned I should take a picture for the blog, Brian got silly and stood in front of the poster.