Can’t find me on fb?

Well, I’ve been battling for a while with closing down my Facebook account and this morning, I did it. Why, you are probably wondering? Time… yes, but that wasn’t the ultimate reason.

I felt like a busy body. Always having to be in everyone’s business.  I actually have become irritated with the constant conversation starter of, “Did you see on Facebook?!” I’m just as guilty as the next.

A couple years ago, I shut down my account because I was struggling with jealousy. Jealousy over big things and little things. Then I decided to start a Facebook business page for Marseille & Moi, but realized you had a to have a personal page too. I found that I had quite a bit of self control when it came to the jealousy. I made sure that if I was struggling, I didn’t get on. Like Mother’s Day, I knew that I would struggle if I saw all these women posting about their wonderful husbands while my wonderful husband was away from home because he was on call for work. Anyway, since I am no longer running Marseille & Moi, I decided the time had come for Facebook.

Some of the reasons I battled with closing my account was an ARPKD/ CHF group that I was apart of and my church ladies group. I really wanted to be  in contact with other family’s with ARPKD and know the needs of our church. I also felt like I was going to be missing out on news… the busy body in me ;)

After I closed my account, I felt convicted on how I have used Facebook to look into people’s lives but never really inquire and truly care. That doesn’t mean that I didn’t pray for people when they asked, or care about their lives. But, because I saw their life’s story on Facebook, I didn’t feel the need to ask people how they were doing unless something bad was going on. What a friend!

This afternoon, confirmed it. My friend has been struggling with a series of miscarriages. She recently found out that she would be losing her 5th baby. While we were talking, she made the comment: “If they really cared about me, they would ask.” It’s true. I want to be a great friend in the good times and not just the bad.

Later this evening, I saw this word art on Pinterest:

Be the type of person that you want to meet.

It was a quick reminder of “do unto others.”  Today, I have been freshly aware of ways that I can creatively care for people and that puts me out of my comfort zone! Yay… I guess! I’m excited about having freedom from Facebook and a new area to grow!  I’ll still be posting here and on Pinterst!

xo, nikki :)

ps- I’m out of my boot and wearing the carbon-graphite insert. Bentley had a good wellness check today, even though he had to get two “real” shots. And Miss Marseille’s ears are all cleared from her ear infections ;) It has been a great day!

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I did it!!!

At 2:45pm today, I gave my first shot! I did it!!! I was scary but the kids did great!! They did not shed a single tear, actually it was so quick they had no idea what was going on. The RN said that I was more nervous then them (which was true), and she also said that they were the best patients that she has ever had. YAY!

Wednesday, is cleaning day. I clean whole house at one time. Knowing that I was going to have to learn how to do shots today, I put on the new Sovereign Grace CD, Age to Age. One verse in the song, My Redeemer’s Love really encouraged my soul.

My Redeemer’s love is stronger
Than my fiercest enemies
He will hold me in the tempest
Through the flood He carries me
My Redeemer’s love will lead me
Through the deepest valley here
He will shepherd me and guide me
He will ever keep me near

My Redeemer’s Love – Age to Age

After listening to the song a couple times, I did not feel anxious. The RN came a little early and walked me through everything. We practiced a couple times in some weird pad. Then we got things prepped and Bentley came out first. He was in a good mood and was asking questions, but never batted an eye. He was so brave! I was definitely nervous. I didn’t want to mess anything up. Much to my relief, it is quick and easy. I’m really grateful that the shots are pre-loaded and have a really short needle. Marseille did wonderful too.  After she was done, she said, “I’m taller now!” It was so funny! Because the kids did not get upset, it makes it easy on me.

God’s grace was all over this situation! Thanks to everyone who has been thinking about and praying for us!

xo, nikki :)

A long and honest rambling from my heart.

Jesus, the name that charms our fears,
That bids our sorrows cease;
‘Tis music in the sinner’s ears,
‘Tis life, and health, and peace!

~Oh For a Thousand Tongues

Okay, here it is. I have a huge fear of needles. Like HUGE fear. I never really liked getting shots or getting my blood drawn, I can’t imagine that most people do.

The boxes that opened my fears:

These huge boxes for two little packets of medicine!

As I was opening these boxes, something stirred in me. I was expecting these boxes and was at peace with having to give the hormones to them, but I could barely breathe. Then a tear fell. “Oh why, why do my kids have to experience so much pain?”  Then the sobs came. I could not control myself. Then reality hit me. I am going to be the one administering the shots, causing them pain. I read some of the manuals and saw that one of the rotated areas of  shot placement is the stomach. Uggg.

God knows what I need to grow. He knows what fears I have that need to be turned over to Him. Last Saturday, I was having a pity party completely unrelated to this struggle and I was complaining to God. I was asking, “Why can’t my life be easier?” He answered me immediately, “Because you wouldn’t trust me.” BAM! In order for Him to charm my fears, I need to be willing to face them. I can truly say that I am grateful for this opportunity to grow and trust even if it involves needles.

I got on facebook and updated people on how I was struggling and got a lot of encouragement. One in particular was from a dear friend, Erin.  She shared her chicken phobia and how God helped her overcome that fear. She had no idea that I struggled with the same thing! Here is what she wrote:

I used to not be able to pick up a raw, whole chicken. If I ever had to use if for cooking, I waited until Matt got home so he could put the chicken in whatever container it needed to be in. The thought of touching that chicken made me want to vomit, cringe, run, etc. Anyway, I am happy to report that I can now pick up my own chickens…I still can’t believe I am able to do it, because of how it used to terrify me!!!! I realize your children are not raw chickens, but if God can help me in the kitchen with my chicken phobia, He will certainly give you the grace you need to give the shots!!!!!!!

and what I wrote back:

Erin, I used to have the same chicken phobia!!!! I used to pick up chicken breast with paper towels and I would never touch or eat from whole chickens! And God has helped me overcome that too, I shared that in cg a couple years ago! Thank you for reminding me of that and praying for me.

It is amazing how far God brought me in my chicken fear. I have no problems butchering a whole chicken and gasp I eat chicken off the bone. Believe me it’s a BIG deal! If God can help me with chicken, I know that He will help me with the needles!

Believe me! I’ll let you know how it goes!

xo, nikki :)

butterfly in the sky

Our butterfly project was so much fun. I think I enjoyed it more than the kids!!

Fresh parsley from the garden. You can see that the caterpillars look different. The small one in the center has not lost it’s skin yet. They shed it and then they look like the larger ones!
Caterpillar poo-poo and the large green wet spot is the undigested food that they void before they become catalyst. I cleaned the cage daily because they poop a lot!!
They have a little silk sling that they make for themselves to hang on. Their color fades too. They were in this state for about 24-48 hours.
One of our green catalyst. They stayed in their cozy home for a week. Easy pet!!
I saw this one fall out of the catalyst while I was on the phone. It was the closest I got to seeing one actually “birthed”
It’s so amazing!
Releasing the butterfly back on the parsley plant. Hoping that they will come back and lay more eggs.
And the circle of life continues. Can you spot the another caterpillar?

Here are some pictures of us having fun learning about caterpillars and their metamorphosis.

We’ve seen some butterflies flying around and I’m hoping that they are some of ours! Danny and I were amazed at the butterflies’ process and that they live for such a short time. Only 3 to 4 days. It makes me think of this verse:

What is your life? For you are a mist that appears for a little time and then vanishes. James 4.14

Can’t wait to do this again!

xo, nikki :)

Time stops for no man…

April and May have been a whirl-wind. Especially the second half of last week.

I hurt my foot a couple of weeks ago, I have no idea what I did specifically but I could barely walk. It felt like it was cramped up and no amount of stretching could relieve my foot. I ended up going to get utlrasound therapy done on it and did stretches for plantar fasciitis. The pain was relieved but I still had swelling.  So, I have been limping around.

Last Thursday, I took Marseille to the pediatrician’s office to get her checked because she was having a hard time hearing. She has ear infections in both ears. I felt really bad about that. She showed no signs of an ear infection! Later that evening at ladies’ care group, I was explaining what happened to my foot and one of the sweet ladies in our group, who is an RN, looked at my foot and told me I should really see a Dr. for it. I was afraid of that.

So, Friday morning I got an appointment at the large sports medicine group in town. I was so grateful that they were able to work me in and with the Dr. that had been recommended to me!  More of God’s favor!! I just barely made it to the appointment but I found out I have a fracture and subluxing cuboid (an injury common in ballerinas). I really didn’t want to be put into a boot because, let’s face, it I’m a mom and I have small children to care for! They started me off with a carbon graphite insert to try an immobilize my foot, but when I got home I didn’t have any shoes that it would fit in correctly. Then the I tried to get a hold of the office but that Dr. travels to different offices, by the time they got back to me he was at his third office. Anyway, now I am in a boot. It’s actually better that I am because it makes me slow down, sit down and rest. My follow up appointment is in 2 weeks, they will check the fracture and pop my cuboid back into place. It sounds more painful than it is, so I hear…


To add to the craziness of Friday, Danny’s grandma passed away. I was sad, but I was mostly sad for Danny. They had a special relationship. The cool thing about Grandma Deaton is that she and Danny shared the same birthday. I didn’t really know her very well because as soon as Danny and I were married we moved away from FL. Which didn’t allow me any time to really know her, and when she started to have Alzheimer, she didn’t remember me. Because we were further away and didn’t watch her decline, her passing was easier for him. Unfortunately, due to our current circumstances, we weren’t able to make the funeral. We heard that it was a good funeral, as good as one can be, and that lots of people came. That is always comforting! I will miss all of her crazy stories!

What have we been doing before all this calamity? Hanging out with friends, Dr. appointments, going to the zoo, raising butterflies, a little crafting and sewing but more to come about that!!

xo, nikki :)

Nephrology Appointment

It’s been a long time, but we actually had a perfect Nephrology appointment! Both, Bentley’s and Marseille’s blood pressure were in the high end of normal. That has not happened since before they started blood pressure medication. The Dr. and I were so excited. He said that since we just had blood work 3 months ago and their blood pressure was doing well, we could wait to do blood work until next time :) Whew! What a relief! AND on top of that, he gave me a prescription for a numbing cream to help Bentley and Marseille get through their blood work. Bentley’s fear of blood work builds as soon as we get to the waiting room. So, we are hoping that the numbing cream will help him not to fear because it won’t hurt. We shall see at their next round of blood work :) Right now we are thanking God for the blessing of a good report!

xo, nikki :)

Endocrinology Appointment

When I first heard the word Endocrinology, I was nervous.  I wasn’t sure why I was nervous until I figured out that most of the kids with ARPKD are put on growth hormone therapy. Yikes. More medicine. Costly medicine. Injections. Needles. Yuck! I decided to put it out of my mind until I knew that they needed it.

On the 25th of April, we had our first Endocrinology appointment. I didn’t sleep well the night before. I was so anxious and fearful for the appointment. Not like me at all. I have not been anxious for any of their appointments before, so I knew it was the growth hormone. I prayed and prayed that God would take the fear away and that I would have peace for whatever He would want for us.

When we got to the appointment, I was still struggling, but it was not as strong as it had been. We love our doctor, she was very kind and informative. Both of the kids are starting thyroid medicine to help lower their thyroid stimulating hormone. Their thyroid function is fine right now but we want to help the problem before it damages their thyroids.

The next order of business, their growth. It plateaued about 8 months ago. Then the words came out: “I think Bentley is going to have to have growth hormones. I don’t think we will get anywhere with just the thyroid medication.” At that moment, my fears dissolved. I felt peace rush through my body. I was not anxious at all. I asked the Dr. a couple of questions and told her how afraid of needles I was. She gave me some specifics that helped me feel comfortable with our new hurdle. God also gave me a picture of their over-sized kidneys that keep getting bigger in their non growing bodies. And I knew that we had to do it.  I would not want to regret the decision of not helping them and causing them pain just because I was afraid to give them a shot. Both Bentley and Marseille will be starting the growth hormone treatment. The Dr. said that Marseille is like Bentley’s little twin.

They both had to have x-rays of their hands to date their bones. They both were so brave. Each one of them had to stand there by themselves and have their picture taken. We got the results a couple days later. Marseille’s bone age is 2yrs and Bentley is 2yrs 8 months. Marseille is not to bad, but Bentley’s is not very good! Just more evidence that he needs some help :)

God’s presence in that appointment was so evident and I was so grateful!

xo, nikki ;)