Brinlee's Battle of 2013

I need to apologize for not posting in nearly 1 year. It's been a crazy past year, but not an excuse, as my goal was to at least help others that may be able to relate to the similar things that me and my family have experienced. I appreciate those who have commented with information on the FSGS nephrotic syndrome that my "baby" has and would love to keep in touch with you!



At the beginning of last year, Brinlee was continuing with her steroids, but weeks of trying to wean her from them, proved to be an on-going struggle. Last April, she had a terrible week of diarrhea and swelling that started on Easter weekend. She also had a runny nose and cough which because her immune system is compromised, can trigger her kidneys to "relapse." Although there is not ever a good time to be sick, our family almost always gets sick on a holiday or the weekend when being seen in the clinic is not going to happen. So, our only option is to go to the ER. We did start that Easter day at my aunt's home with extended family. Unfortunately, Dave was sick that day and so I was on my own for getting the kids ready. I took them to church and then we stopped back at home to grab the food and off we went. If you are like us, time is always flying by and we struggle to get out the door on time. Needless to say, I was very stressed to rush all three kids into the car and get all the necessities also packed up. After finally grabbing everything and buckling each of them in their seat, we headed out. As we were just about to pull out of our neighborhood, the purple frosted cupcakes I had made and sprinkled, flew off of the front seat and splattered onto the car floor, glove box, and center console. I tried to catch my breath and bite my tongue as I put the vehicle in park and assess the damages. A few tears streamed down my face, knowing those cupcakes were frosted during the very late and sleepy hours the previous night. I wanted to throw in the towel and turn around. It took every last bit of strength to trudge forward to the Easter gathering. I called my dad, telling him I was going to be late, but unfortunately people were hungry so dad told me to take my time, drive slow, and that despite the fact they were going to eat without us, there would still be plenty of food when we got there.

We made it to my Aunt & Uncle's and I just couldn't relax and enjoy the holiday. Brinlee was clingy and I knew she was sick. It felt like every passing minute, she was getting sicker. Either that or I didn't have time to pay attention to just how sick she was feeling during my flurry of rushing that morning. Her eyes were puffy, belly slightly distended, and she intermittently cried out from stomach pains. All I could think about was wanting to get her to the doctor, but debated on whether it would be worth a trip to the ER. We left our family shortly after the Easter egg hunt and arrived home in the late afternoon. Because I felt we may be able to at least get a start on antibiotics to assist her already compromised immune system, I decided to bring her in to our local small town hospital. Explaining all the pertinent information to someone who doesn't know anything about your daughter in a small amount of time, was no easy task. This was a doctor who listened, but didn't understand the entire realm of treatment and countless plans that have been made with her primary doctors. He did a thorough exam of ears, throat, lungs, and belly and determined that she likely had a virus. I asked him to give her a prescription for an antibiotic with a plan to see her primary doctor the next day and it took a lot of convincing. Understandably, he did not want to treat an already over antibiotic treated country without a need, but Brinlee is different. I explained that because she has such a compromised immune system, has a runny nose and cough and is spilling lots of protein (a big sign that her kidneys are struggling), her primary doctors recommended that she would need antibiotics more than any average patient. He continued to deny us the antibiotics and I politely told him that I understood and we would call her primary doctor the next day whom I was confident would give her antibiotics. He waved his white flag and decided to give us enough doses of antibiotics to get her through till the next day.

That night was rough. Brinlee grimaced and knelt over when the abdominal pains struck and then screamed as I cleaned her bottom from numerous loose diapers . The next day, we went to a pediatrician that knew Brinlee, but was not her primary doc since her primary was not in that day. We did stool cultures, labs, and continued her antibiotics along with a burn cream for her poor diaper rash. Her weight was elevated slightly and I planned to keep a close eye on her over the next couple days. That doctor called me the next day and it seemed as though the diarrhea let up a bit and her bouts of pains were not as often as before so I explained that I thought she may be on the mend.

A couple days passed and I was wrong in thinking she may be getting better. Her belly was increasingly larger, she wasn't eating, and was still having belly pain and lots of diarrhea. We went to see her primary doctor and noted that Brinlee had gained approximately 5 pounds that week. This, after not eating and having diarrhea. He recommended we go home, pack our bags, and head to the University hospital ER where her nephrologist works. She was clearly needing interventions quickly. With tears pouring out of my eyes, we both agreed that she had ascites (fluid built up in the belly) and may need to stay overnight to have the fluid aspirated or removed. I was extremely tired and overwhelmed. I felt very sad that my daughter was going through so much and wanted her to feel relief.

We went home, packed our bags in case we were staying at the hospital, and her primary doc called the University ER to tell them what was going on.

When we arrived at the ER doors, the front desk staff were expecting us and we were immediately brought to a room. Because this is a University, there are many student interns and in our case this is who greeted us in the room. You could tell he was fresh from the classroom. He of course asked us what brought us there and after I explained Brinlee's long week of belly pains, endless diarrhea, FSGS, and weight gain, he smiled pointed at her extremely bloated abdomen and says "Well, it's clear what's going on. You can see it from here. She full of stool." It took just about every ounce of strength inside me to not immediately tell him to get a trained doctor in the room. I took a deep breath and said, "well, her doctor and I are pretty sure she has ascites with all of the symptoms that she's experiencing and the fact that she's not eating and yet having constant stools, we are pretty sure it's fluid and not stool." I didn't tell him I am a nurse. I wanted him to treat me like he would anyone else, but boy this was a tongue biting moment. He left the room, likely to consult with his "upper" and came back to the room with a plan. He was going to first do a bedside ultrasound to quickly clear up the matter of whether or not stool was filling her belly. The very first area of her abdomen that he placed the ultrasound probe, he jumped the gun and quickly said, "Not much fluid here." He then proceeded to check her entire abdomen and did see what he called "a bit of fluid." Many labs were drawn and an x-ray was also done. After a couple hours of tests, he and his colleagues came into the room with the final status and plan. He stated, "Well, the good news is, she doesn't have much stool in her belly." My tongue was starting to hurt at this point. He continued, "It does appear that she has some fluid in her abdomen and with her protein levels where they are, we talked with the Nephrologist who recommends she start a medication called Furosimide, also known as Lasix." Before he could even start telling me about the medication, I nodded and said "Yep, ok." He paused, then stated, "You've heard of this before? Has she been on it in the past?" Well, so much for keeping my cover... I sighed and said, "No she hasn't, but I'm a nurse so I'm aware of the medication." In that moment, I think he had a flash back to the moment he confidently pointed to her abdomen and was convinced she had stool in her belly. Funny to think he would think that our doctor would send us to the University for stool in the abdomen. Her steroid dose increased yet again and she started Lasix. We luckily were able to go home that night and hoping to finally be on the road to remission.

A couple weeks passed and we went to see her Nephrologist. It was determined that Brinlee had likely built up a tolerance for the steroids and thus they were not effective any longer at that time. It was time to start her a new medication. Our options were between 2 different medications. The first option was an anti-rejection medication that's side effects included excess hair growth all over the body which would require shaving, including her face and could also cause her gums to enlarge and need to be surgically decreased. Her other option which we chose was Tacrolimus. It's main side effect which is fairly rare is diabetes. It is basically a medication that helps stop her body from attacking her kidney and is thus used mainly for patients who have transplants as an effort to help prevent the body from rejecting the "foreign" organ. It's a medication that she will need for life since her body will always want to fight her kidneys. I will say that getting this medication covered by insurance was not easy by any means. It's a very expensive medication and there is not a generic option from my understanding. Literally numerous calls to numerous insurance people led me to feel frustrated and yet grateful that this was really our only major insurance issue. To think about all the people who don't have insurance or have poor coverage really made me try to be patient and thankful for what we have. At that same appointment we learned that there will likely come a day when her kidneys no longer function the way they need to and she will need a transplant. The doctor explained that some people with FSGS carry a mutation in their blood which if present, significantly decreases the persons chances of dealing with FSGS after a transplant. Those who do not carry the mutation will almost immediately start spilling protein related to FSGS on the operating table right after a transplant. It's an expensive test to have done to find out if she carries the mutation, so it is typically not done until a transplant is needed. So, we pray she has this mutation, but most of all we pray her kidneys she has now will be strong enough for many, many, many years to come. That day, we also started her on a blood pressure medication because her blood pressure was 140's/90's. Luckily she needed that only temporarily. After nearly 13 months, Brinlee was finally weaned from Prednisone. She still may need it for short term (like a week) when her kidneys have relapses, but not months, like before. 

I truly did not realize how puffy the steroids had made her until looking back at the pictures now. I knew she was puffy and had the typical "moon face" that steroids cause, but never really thought it was to the extent that it actually was. On a very humid, hot 4th of July family reunion, one of my great aunts looked at Brinlee and exclaimed in an obvious tone, "well she's healthy!" I calmly explained that she was actually quite sick and her puffy face was from the steroids she was on.

She turned 3 yo last month and it's amazing how far she has come. She is too smart, spunky, naughty, funny, sweet, and confident! I love her to pieces and am sooo very grateful for all of the people who care about her and pray for her.

FSGS WHAT????

What a whirlwind our life has been in the last couple of weeks! After a second relapse of Brinlee's nephrotic syndrome and just a few weeks away from her final prednisone wean, we were told she would need a kidney biopsy. At that time, I still was not comprehending everything and thought things would be ok. The thing is, she did so well on Prednisone. Her urine went clear of protein in no time and mostly maintained there until we would almost be done with the medicine. So in my mind, she really responded well, but for some reason just couldn't go to a really small dose without consequences.

To top it off, her swelling and protein increased right before Christmas weekend because in my family, nothing ever happens on a normal weekday. Christmas Eve she went in for a pre-op physical and labs and her biopsy was scheduled for that Thursday. The experience was not as smooth as anticipated and communication was lacking from the beginning of her hospital stay, but in the end, they got an adequate sample. Could you imagine, sometimes that is not the case? I would have been completely devastated if we went through all of that, only to find out, they couldn't get an adequate sample from her kidney.

A week goes by and we continue on the high dose of steroid that was increased a week prior and I am waiting to hear back from her specialist. As Friday arrives, I make a call to the clinic and am told that I can talk with the Care Coordinator. Luckily or not so luckily, I know that the Care Coordinator is not working on Fridays and tell the operator that I need to have Brinlee's specialist paged rather than talk with a machine that won't get back to me til Monday. I explained that we did not experience great communication from our hospital stay hoping she will realize that this phone call means more to me than she could know and hoped the frustration would seep through my voice to her end of the line. After she tells me that our specialist is not available, she puts me on hold to look further into my urgency. When she comes back to the phone, she tells me that our specialist is actually working and that she would call me back as soon as possible. Frustrating, but glad she really looked into the search for Brin's specialist.

A couple hours later I receive a call back and the news is far from what I expected. "Brinlee has FSGS nephrotic syndrome." I reply, "Wait fs...what was that?" She says "It's called FSGS and at this time there is no cure. She will need to go on a different medication called Cyclosporine for an indefinite amount of time until dialysis or transplant are needed." These were the words I heard on the other end of the line. I asked, "So she will never grow out of it like we thought earlier?" The response, "That is correct. At this time there is no cure. I will need to see her in the clinic soon so we can go over this." That was a phone call I will never forget. I hung up and cried and cried and cried. I tried calling Dave, who was running an errand, and wouldn't you know I got his voicemail all 7 attempts to get a hold of him?!

We had dinner at friends' house later that night and so I didn't have much time to research. By the time we got home, I just wanted to sleep from mental overload.

On Saturday, I started looking at well respected sites used by the hospital I work at and also at sites that support nephrotic syndrome research and found that people can go into remission and that there isn't a whole lot of concrete data to really know why this happens. FSGS, focal segmental glomerulosclerosis, is an autoimmune disorder that causes her body to attack it's kidney leaving scars in the areas that filter which makes these filters inadequate to send protein to the blood stream, thus causes protein to build up and spill in her urine. Swelling was the number one thing we noticed in her initially. I found forums with people dealing with FSGS who have gone on gluten free diets and went into complete remission and off medications. After LOTS of prayers, I felt like this was our answer. If we can help in any way, I was ready to try and this was something I could do.

On Sunday after church my dad and step mom took me to Whole Foods so I could get a "taste" of gluten free options. After picking out a good variety of food choices, I was putting my groceries in the SUV and because I shut the window part of the vehicle before the door, the window completely shattered! I couldn't believe it! You know what though? We all just laughed! Dad and Patti couldn't have been more understanding and kind about me breaking out their back window. On the way home, I called Dave to tell him what happened and his first words were, "Oh no, really? Well, I don't know where to begin or who to call first?" I said, "What are you talking about? Patti already called the glass company and....wait! You know it wasn't our car right?" A breath of relief hit him and he said, "Ohhh well thats good! I was gonna say!" Oh boy Dave! My dad cleared all the glass that was still stuck to the window frame and one piece was left. I noticed it as we were driving back. It looked just liked an angel wing! And, to top it off, at church the pastor was talking about angels and how if you have an angel on your Christmas tree it represents that you are a person who needs a little bit of reassurance that you are doing the right thing. Not a doubt in my mind that God was telling me that gluten free was the right thing to do and he gave me reassurance with the angel wing!

So Sunday night January 6th was the official start of Brinlee's gluten free and as much organic as possible diet. We started her on Nat Mur which is a medication recommended by a homeopathic doctor thanks to my Aunt Karen who recommended him, gave me his phone number, and even bought the medication. We put her on a multivitamin, omega 3, and an immune support vitamin. The second night on this diet she was diuresing (peeing a lot) so much that I changed her night time diaper 4 or 5 times that night. She was looking thinner and healthier. She was more active, more happy, and even eating a lot more! We are also decreasing her salt and have switched her to Lactose free milk. She continues on the high dose of steroid which was increased that Thursday before Christmas, so the only change we have made was diet and it is working amazingly! Her urine, which we test everyday, went from 30 or more of protein since her relapse to negative or a couple trace proteins since the Sunday we started her gluten free diet. There is no way that this is coincidental. I have many family members on my dad's side that have autoimmune diseases, which get worse depending on their diet. My dad has Crohn's Disease, grandma has Diverticulitis, Aunt and cousin have Ulcerative Colitis, and Aunt with Lupus. This past Sunday we had a Birthday party for the girls and before I told Dave's sisters about the diet, they were already expressing how good Brinlee was looking! It's not my imagination! I'm not the only one seeing this! Her negative urine is proving to me that this is working! I cannot wait to find out how much she weighs tomorrow to see just how much fluid she has lost. We see the specialist tomorrow and will make some big decisions. I truly hope she is open to my ideas. Brinlee's primary doctor is sceptical about the gluten free diet and talks about how big of a challenge it is and I say there is no challenge that compares to that of watching your child go through dialysis or a transplant. I am up for this gluten free challenge and to be honest have been pleasantly surprised at how easy it actually is!

Did you hear that?

All the family was asleep while I pulled out the cereal from the pantry in a somewhat groggy state. After I poured my Captain Crunch Berries and poured the cold milk in the bowl, I heard the maraca at the bottom of the stairs shake. Usually something like this would freak me out considering I felt alone being the only one awake, but surprisingly I was relaxed while trying to rationalize what could have caused the maraca to shake. After not coming up with much justification, I went to grab my bowl of cereal when I heard the maraca shake again. "Ok, I bet one of the kids woke up and they are slowly making their way up the stairs" I thought. So I went down to check, only to hear their snores and see them sound asleep. Hmmm, no doubt that the maraca shook. I heard it 2 separate times. It was as if the first time it happened, I brushed it off as maybe I was imagining it, but then it happened a couple minutes later, as if to say, "yep you heard that all right." I don't know if it's because I'm in such a good place spiritually that it doesn't scare me, but I really was not bothered by it.

When I was little, I had an intense fear of ghosts. My grandparents lived near an abandoned "haunted house" and when I was around 6 yo my dad, my sister, and I lived with them which is when I believe my fear of ghosts was heightened. I would go to bed with my head barely peaking out of my blankets with my body so tense that even my breathing made me nervous. I didn't want to disturb the ghosts that I was sure were around. Never did I see any or have any weird things happen, but I walked around the farm with a thick cloud of fear especially when I was alone. I even walked around in my brown rubber boots and a spray bottle filled with water so I could randomly spray the air, thinking it would disintegrate them, if in fact I felt like a ghost was near! Many nights I would wake up screaming from nightmares that, to this day, I can remember. It was awful! It sounds crazy to most, I know, but this was my "reality."

My mom said that when her and my dad were together, they lived in an old house that she had no doubt was haunted, especially on the upper level. She refused to go up there and on the day that they finally moved out, she said my no-nonsense uncles who helped her move, also felt that something was upstairs which scared them as they helped her move.

There have been random strange things that happen in my house and have been happening every once in a while since we moved in. It was a brand new house, so I'm not sure if it is the land and who was on it prior to us or if it's someone who's past on and knows us that comes to visit. Things like doors closing, loud bangs from unattended areas, and things falling from the counter when no one was near them. Even with my history of fear as a child, I don't have a sense of worry when these things happen here. My gut either feels safe or I try to rationalize and push the event out of my mind so I can continue to live here! Haha!

It makes me wonder if Mason senses something more when he goes to bed because for almost 2 years he fought going to bed in his room downstairs. My daughter, Lilah, on the other hand, has no problem going down to bed and will even ask to be put to bed! Lately he has been going to bed a lot better than he used to which makes me feel better. He is a lot like me in many ways and I'd hate for him to feel the fear that I used to have.

Who knows what causes these strange things to happen? Nobody can really discount what you hear or see because these things did in fact happen, but people can question or believe whatever they want when it comes to why these things happen. With any explanation, I trust my gut more than ever and believe that whatever it is that is causing the unusual sounds and movements, it isn't meant to scare us.

Bump in the Road

About mid May, I noticed my youngest, who was 18 mo at the time, had increased puffiness around her eyes. Every morning seemed to be when the puffiness peaked and by evening, it seemed to diminish. I would point it out to other family members, but no one else really noticed a difference. Dave saw the increased swelling, but we both chopped it up to allergies since the air was being stirred up by so much rain. Nothing else seemed to fit. We didn't change anything that would trigger us to think that the culprit was environmental. It was just odd because she didn't acted any different and no other symptoms were present. As those two weeks pasted, the swelling was getting worse and not going away at night time like it had before. Her belly was getting rounder and her feet were barely squeezing into the sparkly sandals that once fit to perfection.

On the Wednesday before Memorial Day weekend, I had decided that this puffiness was not getting any better and if we didn't do anything soon, her eyes would be swollen shut. I worked the next day, but made an appointment for the first thing in the morning with a different doctor than normal, since Brinlee's primary physician was on vacation. I got a surprise visit at work from Dave and the kids as they were passing time from the appointment and waiting for labs to come back on Brin. Dave mentioned that the doctor thought that whatever was causing Brinlee's issue may have stemmed from her protein level being off, but nothing was definite. I was confused and unfortunately there wasn't much clarity at that time. When I came home from work, Dave had said that Brinlee was prescribed eye drops, that lab was unable to get a good blood sample, and that he didn't know much more than that. Before we put Brinlee to bed that night, we put drops in her eyes and hoped the morning would bring her swelling down.

Unfortunately, her eyes were puffier than ever. She looked like she had been crying all night or punched in both eyes. I panicked, called Dave, then called the clinic to get in with a Pediatrician that I was familiar with. I knew that this Pediatrician wouldn't let us go on to the upcoming long weekend without answers. As I made the phone call to the clinic to get in with the Pediatrician, I had a bit of panic set in as the scheduler told me that if there was an opening with any of the other doctors in the clinic, we would have to see them because their policy is that if the doctor you are trying to get into is booked & also not your primary physician, then they must look at the other doctors' schedules for an opening rather than requesting to be squeezed into the Pediatrician's schedule. I held my breath as she searched for other openings and was relieved to here that everyone else was also booked too, so she could move forward and send an appointment request to the Pediatrician we wanted to see. We were called back within minutes from hanging up with a confirmation time to be seen.

I gathered all 3 kids together and we were quickly on our way to the clinic. Go figure that this would be the day that Dave was gone and working with a friend. When we walked in, some familiar faces who worked at the clinic, came up to us, trying to brainstorm what could possibly be causing the swelling. Every last one of them thought it was allergies. I knew it wasn't allergies. She hadn't itched them at all, was not sneezing, and her nose never drained. The Pediatrician came in and after reviewing the information from the day prier's appointment, he had guessed that her kidneys were to blame. He ordered labs and told me that we would know for sure if it was kidney issues once her results were back, but he was pretty certain that the labs would confirm his thoughts. After he walked out of the room and I let the information set in, I remembered that my maternal grandma & maternal aunt had kidney issues and quickly ran out of the room to let the Ped's doc aware of this information. Right away, he ruled out any relation between her kidney problem and my family's and set my mind at ease.

After about 20 minutes of waiting for the labs to be processed, we had her results. Her diagnosis confirmed... nephrotic syndrome. Her labs were completely the classic look of the syndrome with protein in her urine being 657 (normal value 1-14) and her albumin being 1.1 (normal being at least 3.5). Basically her kidneys were not working properly, to say the least, and her entire body was filling with fluid. The cause is unknown, but likely stemmed from some type of virus. He was 98% certain she had the type of nephrotic syndrome that can be treated and cured. The regimen would include a minimal of 6 weeks of high dose steroids twice daily and antibiotics once daily. Since steroids tend to wipe out immunity, she needed the antibiotics for extra protection. The doctor made it very clear that a fever at any point in the process would need immediate attention and give her a spendy admit ticket to the hospital. We pulled her out of swimming and tried to keep her away from crowded places those first few weeks to give her extra protection.

The true test would come the week after the steroids were started. If her labs showed improvement, we would know that the nephrotic syndrome is the type the the doc was 98% sure that she had and if not, it would mean she would need a kidney biopsy and a change in treatment plans. With lots of prayers, we hoped for the best. I had to work the night before her appointment that would determine her fate, but no matter how tired, I was not missing that appointment. First sign of improvement was her 1 pound weight loss showing us that her kidneys were starting to work better. Then came the true answer. Her blood was drawn and we went home with a plastic baggy on her bottom to collect urine. I arrived home, exhausted, and checked to see if her results were ready to view in the computer. Since she hadn't peed and thus the specimen not sent at that moment, we wouldn't know her protein level and thus would see only the albumin. Her albumin was ready to view. With a groggy mind, I seen that her albumin went from 1.1 to 1.2, barely anything to cheer about. As a matter of fact, I cried myself to sleep. I thought for sure that we would be scheduling a biopsy in the next week. After a few hours of sleep, I awoke to check for her protein lab value and had to do a double take to make sure my eyes weren't deceiving me. Protein level= 45!!!! It was 657 less than one week prior and had dropped significantly! Hooray!!!

Her labs are now back to normal and last week we were able to finally decrease her dose of steroids and discontinue her antibiotics. She is much more irritable than normal and doesn't sleep well from the meds, but we are so grateful that these meds have essentially cleared her body of the nephrotic syndrome. Next week, she will see the Nephrologist and hopefully be discontinued from the the steroids shortly after that. Her cheeks are bigger than ever from the steroids and at a family reunion an older lady thought she was looking pretty "healthy" due to her increased weight appearance. I explained to her that she had chubby cheeks from steroids and she knew then, that healthy may have not been the right words ;)  I know that this bump in the road is nothing compared to what other parents have endured and am so very grateful that we have the medicine available to treat our "baby."

Bringing Sexy Back

As an honest person, I will say that nothing in this world is perfect. Most of us realize this and learn from mistakes made in the past. I have had an up and down, total roller coaster ride marriage. From the people that I do open up to about this fact of my life, I have realized that no-one has a continuous "fairy tale" marriage. It is a lot of work and sometimes a lot of heartache. But, there is a reason that we choose to work at it, plain and simply, because of the rush we get when we go down the huge hill on the roller coaster. It's a blast and completely worth the up hill climb. But, if you lose hope on the way up, you may never be able to enjoy the excitement of the fall.

So, one thing that has been lacking is our romance & spice, something that we used to take pride in. For myself, I don't really realize how big of a deal the intimacy is until we actually have some. Then, you sit back and think, why don't we do that more often. "Life happens." You work full time, have bills to manage, and 3 kids to care for. But, why don't we care for our most personal relationships as well as we do the other people or things in our life. I am still trying to figure this out myself. I can come up with a lot of excuses, but in the end, those excuses are really not good reasons to neglect the need that really does help keep our relationship happy. It's like a plant. Without water, it will not live. How do we expect our relationship to survive without the care that it truly does need.

One big problem for me is the spark inside has dwindled. Some say the hormones shift after baby, some say it's cause life is exhausting, and others will say a booked schedule leaves no time. No doubt that some of these things do play a major part in contributing to the lack of intimacy, but I won't accept that as a final rationale for totally excluding this important connection we all need.

Finally, I have found the person that left me about 6 years ago, coincidentally the same time I got married. She does still exist deep down inside me! Thanks to 50 Shades of Grey, that spark has finally ignited to a flame. I know, I know, there are people out there who refuse to read it for their own beliefs and that's ok, but, for me, this book has literally brought back the woman that I had lost. I have never read a romance/erotic book before, nor had I been interested in it, but couldn't get away from all the hype. I had no idea what I was getting myself into. Once I started, I couldn't put the book down. My internal being was awoke and reminded of the times when keeping my flame lit didn't take adjusting of my busy schedule. I have read many self help books and took all the advice that was offered on bringing the spark back, but none of them were natural. It was as if I was doing a homework assignment rather than letting myself truly be in the moment. For me, the best intimacy needs no instructions. It just happens without too much thought. Books are not always meant to teach a lesson. Some are meant to be enjoyed. Sometimes you just want to stop over thinking things and let yourself get lost in. That is what this book does, but to another level. And, in the end you really do learn something valuable. You learn that you can still have the romance and excitement that you once had. To me, that means more than anything, especially when you are on the up hill climb of the roller coaster, just wanting so badly to glide down the hill.

Locks of Love

Two and a half years ago I received news that my Aunt Kelly was diagnosed with cervical cancer, stage 3 if I remember correctly. She is my step-mom, Patti's, only sister and they lost their mother at an early age to breast cancer. It's one of those moments in life when you aren't sure what to do. You feel helpless and want to make everything better. I was optimistic. My step-mom, however, must have put herself back to the time her mother battled and knew all to well the realities of this horrible disease.
Patti wants as much time with her as possible and tries to make the time fun. We've had a pajama party and put together a giant basket full of goodies for her, spent a day at the Holiday Inn water park, and went to Nickelodeon World.
From the moment we found out about the cancer, I knew I wanted to grow my hair out for Locks of Love. I've done it before so I knew it could be done again. As the time grew near to a desirable length, I started to think of ways that I could make it more of a tribute to Kelly. Her Birthday was Sunday, April 21st, and I was more than ready to cut my hair the couple weeks prior. I had the Thursday before her Birthday off and was able to get an appointment with my stylist. I talked to Kelly and found out she was free that day. Perfect! My plan could be set in place. I went over to Kelly's that morning and we were ready for the 10 inch pony cut. As part of her Birthday present, my plan was to have her cut the pony that would be donated. I would then go to my stylist to get a styled cut and color.

My sister, her son Tyler, my Lilah, and Brinlee all came for the fun! A while back, I was told that the size of a comb is 10 inches so I started using that as my guide, only to realize that the safest and best bet would be to get the handy tape measure that Kelly had readily available. Thank goodness we did, because the comb was close to 2 inches shorter than 10. Could you imagine cutting an 8 inch pony instead of the 10 needed for donation?!

As I said earlier, I was pumped and ready for this haircut. Kelly was excited too, but also nervous. She took her time and said, "Well there's no turning back now!"

When she cut through the last hairs, I could feel the weight lifted. It felt great! I still had a good amount of hair to work with, so it wasn't as drastic as some might expect.

It was one of the most fun things I have ever done! I couldn't stop smiling. My final cut and color turned out better that I anticipated and I got way more compliments than I did the last time I cut off 10 inches. Not to mention, who would think that hair could make such a big deal. Well, I'm sure if you would ask anyone who has went through chemo, they would tell you how big of a deal hair can be. But, in the end of course, it wasn't about the hair. It was really about doing something for someone in a unique and special way. Giving a gift to someone that can make a difference in more ways than one. It was about creating a memory that I will never ever forget.
Kelly is now battling with the cancer that has moved to her lungs and she has recently stated that the doctor's give her 12-18 months. She has decided that she wants to live without the side effects of chemo which would not prolong her life at this point anyways. What can you say? It is overwhelming to think. So, we do what we should and pray. We pray for comfort and peace through it all and of course, pray for a cure to end this never ending battle that disrupts too many lives.

It's the Little "Things"

My kids seem to be changing just as fast as the seasons and I keep hearing this little voice in the back of my head telling me to write more, imprint, and hold tight to these moments.

Brinlee just turned 17 months and is rapidly changing. She's getting to my all time favorite little kids age. The age where everyday is something new and radically different. Her personality is shining and she's wearing her cool sun shades because I'm pretty sure she is impressive to herself! The girl is going to be trouble. Who am I kidding? She already is trouble. You can scold and yell until you're about to erupt and it doesn't faze her in the slightest. She likes to pull the DVDs from the rack and some she will study, but most get tossed over her head and onto the ground. I was being firm and direct when I told her to stop pulling them down and get picking the up, but she didn't even flinch or stop staring at the DVD cover. You would've sworn she was deaf. I finally had it and asked her if she wanted to go to time out and without looking up, she shook her head no. So she really does understand me! The little stinker! She's at that age where because she doesn't say much, you tend to wonder how much she really understands, but clearly she knows more than I give her credit for and plays the game well.
 I get my exercise by chasing after her. She gets into everything! And I mean EVERYTHING! I am convinced that she has the disorder known as Pica most commonly seen in pregnancy. It's a disorder where people eat things that are considered inedible. No lie, she eats the tips off of markers and will chew up and swallow as many crayons as she can get away with. She literally poops out the rainbow sometimes!
She babbles a lot, but actual words are limited. She is still very stubborn about calling me mom and looks straight at me when I come home from work and says "Hi Dad!" The more I tell her to say mom, the more she calls me dad. She says bye, eyes, here, and welcome, but the rest of her communication is "jeh, jeh, buche" whatever that means.
She is following in her sisters footsteps and when being scolded with the words "No" will drop to the ground, arch her back, and try with all her might to squeeze out tears after she makes sure you are watching. She of course makes sure to be on a soft surface and gets even more frustrated if she wants to throw down on concrete.
She is obsessed with toothbrushes and does not discriminate on which of the many in the bathroom drawer she uses. This is not such a bad thing since my step-mom is a Dental Hygienist, but I guess spreading all those mouth germs isn't very hygienic! And this may be a sign of her future as a Dental Hygienist. Ok that's a bit far fetched, but it sounds like a good plan right?
She enjoys using a fork, but also still loves her bedtime bottle. It's like she is Miss Independent and a big girl for some things, but others will be diverted to her baby ways.
 It's a toss up of who, between her or Mason, is more of a cuddler. She starts smacking her lips before reaching you which is absolutely adorable.
 Just like the other 2, she loves music and can keep up her dance moves with them both. One of her favorites to dance to is Katy Perry's "E.T." song.
We will be starting her in swimming next Monday which I am excited about. I love having one on one time and this is a great opportunity for us since it's a parent-toddler class. She is shy, but willing to show off!

Lilah is finally potty trained with the exclusion of the night!!!!!!!! I am so proud! She really turned the corner on April Fools Day of all days. I'm not surprised that she would pick that day. Her personality wants to keep you on your toes and it seems as though the minute you really want to get excited about an advancement from her, she will put you back in your place and remind you that it's on her terms. Thus, I think she picks that day because she knew we wouldn't really believe that her days of diapers was coming to an end and she likes to surprise us. When we are surprised, I think we tend to be more genuine as to not exaggerate something that we anticipate. We didn't get too overjoyed at first, thinking the underwear days wouldn't last, but she proved us wrong, which I am so happy that she did! She is so funny and still occasionally tells me she has a surprise for me and then leans forward on the toilet to show and tell me my surprise is poop! Awesome!
Along with her growing up to a "big girl" she has also grown in inches. Dave and I are sure that this happened overnight!

Mason is still growing like the weeds on a rainy day. He is only 4 1/2 years old and over 46 inches. I guess I am waiting for him to average out like Dave and I. His clothes continue to have little wear and tear due to the fact that he outgrows them so fast.
He's still a major love bug and throws his entire body on you when giving hugs. He likes to wink, point, and click his tongue when he likes your idea. He often talks about things from "back in the day" or "when I was little."
He apologizing often making it hard to put him in time out when he really does need it.
He is obsessed with video games which he doesn't get to play often, but he will talk like they are the only think he eats and breathes. He wants every single toy on tv and it frustrates me because he has an overabundance of toys and doesn't play with them. I really am thinking that I need to simplify Birthday and Christmas gifts because I go overboard and they can't even focus because they are so overwhelmed. I am hoping that doing so will make him treasure and enjoy more toys.
 I may have already mentioned it, but his teacher, who has taught for over 20 years, says he's the nicest kid. He is sensitive though which creates some drama filled moments. He hates going to bed. He is a night owl like his mother and prefers to push his bed time to the limits. He will cry and insist we let him sleep on the couch. After 20 minutes of "pushing" him to bed, he actually calmly lays down and we do our nighttime routine of reading a book, saying prayers, hugs and kisses, and our saying, which was passed on from my dad, "goodnight, love you, sleep good." It's amazing how even though he fights the structure of going to bed in his room, he still deep down relies on the structure in the end.
He will be starting swimming again this coming week. He's such a friendly kid that he gets distracted easily and chats with the other kids during the lessons, but I think that since he is now in preschool, the structure may have influenced his listening skills or at least I hope!

With work and family balance, life can be so exhausting. If the kids are being defiant, it can be hard not to throw in the towel and let them run wild. Scolding and yelling take less energy than getting out of my seat to put them in time out, right? Well, I have come to the conclusion that yelling really doesn't work for my kids. Don't think that stops me from yelling though! But, I realized that time out is the most effective way to really change the bad behavior. And, even though there are times that I can barely lift a finger cause I'm so tired, putting them in time out, in the long run, will help decrease the amount of time that is spent yelling over and over like a broken record. We all need time outs even as adults and so it only makes sense that it is most likely going to be the most effective and beneficial way to decrease the negative behavior.



I enjoy all of their talented, entertaining, and funny moments. It's hard to believe that there will be a time when our home will be quiet and empty. I pray that I am parenting to the best of my ability to make them the best that they can be.