It’s a new year and a “new” me

I think I tripped and fell into this year and I’m still struggling to get up. It has been the weirdest transition for me. Normally, I am all about setting up goals for the coming year and am so excited to have a fresh start. But this year, I was not ready for it. I had no time to think about anything. I woke up and it was a new year.  Don’t get me wrong, I am still excited about it being a new year but frankly, I am still trying to process last year.

For me last year had many highlights, but it came with a lot of health issues and some major healing. It’s was probably the hardest year of my life but the year that has given me the most freedom. The hardest times produce some major growth, right? In a nut shell, taking soy, dairy, corn and gluten out of my diet made me feel better than I ever had in my entire life. My hands didn’t swell or ache, my feet didn’t cramp, my skin cleared up and wasn’t itchy. I could actually think clearly and had energy to make it through the day. I could tolerate the sound of my children’s voices and not have crazy outburst of anger. All of these are reasons for me to stay away from my food intolerance until my body heals. I would workout and sweat a bunch and feel amazing, so I also need to find out why my body was so stressed.  I couldn’t figure it out. Nothing in my life had changed and I felt like I had a good grasp on our day to day life. One of the major blessings of the year was that the kids were stable. I realized that that was “the problem”, like having stable kids should be a problem! It was like being in the eye of the storm,  I was inside the calm and could see the chaos around me.

In late October, one of my friends had a baby and he was in the PICU, I was actually able to visit him without feeling overwhelmed. I felt useful in the situation because I could understand what my friend was going through. Thankfully, he was healed and released quickly. But then it set in their baby was well and mine were not. Most likely they would not get better, but actually it was going to possibly get worse. It made me feel very lonely because I could relate to my friend but I had no one that could relate to me. It made me wish that I had not given away my copy of  Hearing Jesus Speaking into Your Sorrow. Shortly after these thoughts, by now it was November, I had a dream about Bentley not surviving his kidney transplant and what my life was like after him. I woke up very upset but didn’t know what to do with such a dream.  A few days after the dream, during a book study with some of the fabulous (I sincerely mean that) women in our church, we were talking about how Jesus wept for the injustice of sin and sickness. Then it dawned on me. I had never once cried about the kids diagnosis.  There was so much to do and get done that I didn’t think about processing it. I trusted God with the situation and so I felt that there was no reason to cry. Well, after 4 years of carrying all that internally my body was breaking. It couldn’t handle it anymore. Let’s just say I had to compose myself for the rest of that book study and lost it a couple days after. I cried on and off for a good week and then I felt like a brand new person. I literally felt 20 lbs lighter! I have never felt angry or questioned, anxious at times because of the waiting, but trusted that this is best for our family and that is God’s amazing grace on me.

Since this healing, I have had two dreams about Bentley having his transplants. One I am laying in the hospital bed with him reading and the other I was doing yoga in the room for him (funny, huh?) But I realize that these dreams, are so kind of God. I don’t see the dream when he doesn’t survive as a nightmare but rather as God coming along side of me and saying, “We can do this, it’s going to be okay.” And I believe that it’s true because no matter the outcome God is still God. He is good and he is loving. I cherish these dreams because they have seriously caused me not to be fearful of the transplants when they come.

So, with all that going on right before the bubonic plague the kids and I had at Thanksgiving, then hustle and bustle of Christmas, it is no wonder that I have not had time to focus on the new year. I am still recovering from the last one. I really have one goal for 2014 and it is to relish life. I want to enjoy every moment. I want more out of life; more fun, more memories, more living, more flossing, more crafting, more painting, more French studies, more friendships, more yoga, more reading, more love, more God. I cannot wait to see what this year has in store for us! As always, thanks for reading!!

xo, nikki :)

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Summer?!

This post is shamefully overdue, but I’m not going to make excuses of why I haven’t blogged in a while because I only have one: I haven’t felt like it.  That is the truth. My health has been the main reason I have not felt like it. So, instead of using this blog to “complain” about how I feel or the lack of feeling, I just stopped blogging. I was so tired and hormonal that the last thing on my mind was keeping up with the blog.  Which isn’t really fair because that is how many of you find out about the on goings of the kids. (Btw, I am doing much better now. I have cut a lot of stuff out of my diet and working out regularly to help manage stress.) Time is also factor, but you can make time for things, right? So, putting that aside I would like to update you on our life… if you are still interested ;)

The summer has gone by way too fast, but I would be lying if I didn’t admit to being overly excited about this upcoming fall. I am turning 30 and my old soul is so excited!! I actually had the thought, ‘Wow! I am going to be 40 is 10 years. That is so cool!’ I know, I know… I’m weird. Any way, back to this summer. I feel like we just survived.

-We had my grandparents, my parents and my sister come by in the late spring, which was a lot of fun.

-It rained most of the summer, so we didn’t get out too much.

-My dad came back through for business and celebrated Marseille’s 4th birthday. Yup! No babies here! I cannot believe that she is four. She woke up on here birthday and said, “I’m four, I am not 3 a-n-y-m-o-r-e!!” Went to the Children’s Museum for her birthday.

-Danny’s parents made a day trip here to have a birthday dinner with us for Marseille.

-I went paddleboarding… If I lived near water, I would want one sooooo badly. I loved it!!

-The kids went to FL with my parents and Danny went to Chicago for business and I had a wonderful stay-cation.

– We too various hiking and picnic trips. Especially trips to the Biltmore.

– Brought the kids to the train fountain downtown and let them play in it.

-My sister came for a quick visit before heading back to FL

– Went to the zoo as much as we could, and fed the ducks and ducklings a couple times too.

-We did the summer reading program again, but the baseball game got rained out… not sure if I am going to do the library one anymore.

-We had a few doctor appointments early on in the summer and everything is looking good.

-We started homeschooling the last week of August. The kids are loving it, and I am loving the structure in our day.

-We just had a family vacation for just the 4 of us. It has been 3 years since we have done that and it was fun! We went to Charleston, and ended the week with a couple days in Charlotte, so the kiddos could hang out with their grandparents. Danny and I went to Carowinds for the day.

And now, we are at the present moment! I’m sure that I am forgetting stuff… but that is what happens when you wait so long to post!! I will try to get some pictures together and post them later a long with some news that needs another post… no we are not pregnant!

xo, nikki :)

A week of dinners

Switching up our diet has been a little bit of an adjustment. Today when we went grocery shopping the kids kept asking for stuff and I had to tell them, “We can’t eat that anymore.” Each of us have different areas of our new diet that are hard for us: Danny doesn’t really care for the all vegetarian meals, the kids can’t stand the beans and I have trouble with fish.

Here is my new weekly dinner schedule:

-Monday: beans and rice

-Tuesday: vegetarian pasta

-Wednesday: date night

-Thursday: leftovers or sandwiches because we have cg

-Friday: fish

-Saturday: meat

-Sunday: eggs

I am holding this schedule loosely and it may not happen on the assigned day, but the point is to have a plan!!

How we did: Eh. The dinner that I loved, everyone hated. The dinner Bentley and I liked, Danny and Marseille didn’t like. The family LOVED the salmon, I only gagged once. All of us really enjoy the cod, so we will eventually get the hang of it!! Thankfully, I enjoy baking because I am now making all our bread too. I made whole wheat bread last week but it was a little too sweet and it made 3 loaves of bread! So today, I made pita. The pita recipe that I use, you can refrigerate the dough and use it as you need it. I made 8 pita this morning and will save the next 8 for later in the week because fresh pita is the best!! A lot of people make all there stuff from scratch but for some reason, I feel like this is a big deal to me. I guess because I am no longer giving myself the option to buy a loaf of bread. Either I make it or we don’t have it. Oh well, maybe I’ll have nice arm muscles from kneading this dough!

We are consuming a lot more veggies and fruit. I cut back a little on the nuts for the kids but they love them so much it’s hard to deny them the fat!  So here is to another week!!

xo, nikki :)

ARPKD Conference

As you know, the reason we went to NYC was for a conference for parents and caregivers of children with PKD. I am SO glad that we went. I cannot describe to you the feeling of knowing that there are other families like your own. Families in the middle of waiting for kidney failure, monitoring growth, and taking care of children with special needs. We met a couple of families that we will keep in contact with, and if that were the only thing that we got out of the conference that would be enough! But it wasn’t all that we got!! I found it funny that when talking to other families, we would say, “Now do they have AR or AD?” It was so normal to us, but you could never get away with that in a regular conversation!!

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A little Q& A time!

Each time a speaker spoke, they allowed us to ask questions and we had whole time periods of Q&A. Plus on top of that the Dr.s ate with us and allowed us to personally ask questions too. I found that to be helpful. All the sessions were good. Overall, we got some new information on the kids’ blood pressure and we will be changing our diet to help lower blood pressure too. It was exciting to hear leading specialist describe and talk about the disease. She was very passionate and down to earth.

Here are some of the points I took away:

– Clearer understanding of the difference between the dominant and recessive form of PKD. (Where exactly the cysts are in/on the kidney)

– Clearer understanding of what CHF is, and where the kids are at. (Liver bile ducts get enlarged and clogged)

-Reminded us that the internet and Google are not the best sources of information for parents or doctors!

– Renal diets should contain foods that are low phosphorus, calcium, and potassium. We will have to cut out much more once the kids’ kidneys begin to fail. The dietitian recommended everyone should eat like a diabetic for a healthy lifestyle.

– The kidney failure slope is not even, there are many plateaus… I believe we are in a plateau right now!

– Being more aggressive with blood pressure medications can extend the life of the kidney 2-3 years.

– Monitoring blood pressure once a week can help the doctors determine accurate readings.

– Growth spurts can cause the kidneys to fail faster — yay for short kids!

– Life expectancy keeps getting  longer

– The average age at which kidneys fail is older than we had originally been told

– Women with one kidney or kidney transplants can have a healthy pregnancy and have healthy children

– The dominate form of the disease can happen in children

– We MET and TALKED with other people like us!

The changes:

Keeping in contact with our new connections! One of which being in Atlanta!

Now that we have learned more, we are going to be taking action to help the kids with their blood pressure and with their diet. We are going to be doing a diabetic/hypertension/clean/renal friendly diet. I have met with one of the dietitians here and let me tell you, it was a waste of my time. So, I have checked out almost every diabetic, hypertensive, clean diet recipe book from the library! I have read about the DASH diet (for hypertension) but some of the foods that are good for blood pressure are bad for kidneys. So, there is no perfect diet out there for our needs so I am making one up! I basically am taking all the good for kidney foods and working out from there! Danny suggested we all just do the diet together, yay! , but we will have to supplement more calcium and potassium in our breakfast and lunches so we don’t become deficient. The changes we are going to make are:

-We will be switching up grains. Whole wheat and brown rice are best for you but they contain a lot of vitamins that the kidneys can’t process well when in failure. So, to compensate we will rotate between whole grains and white grains.

-Eating fish at least twice a week, once for lunch and once for dinner. Lean meat are good for the ticker and their bodies need the Omega-3s.

-Eating meat for dinner two times a week

-Consuming veggies and fruits that are kidney friendly, and not high in potassium, phosphorus and calcium

-Limit salt to one tsp a day – which I don’t use a lot of salt, but I have gotten rid of all salt based spices and prepared foods.

– Eating one vegetarian meal and one beans and rice meal for dinner once a week.

– Eating more foods that are antioxidants to help avoid oxidation.

I think that is about it! It has been fun reading and planning. I am hoping that maybe if we make these changes we will see some natural change in the kiddos blood pressure and maybe even Bentley’s pH balance.

The next change I want to make, is making suggestions at our next nephrology appointment about blood pressure monitoring. We hope to purchase a blood pressure cuff and a stethoscope to monitor blood pressure once a week a home. Monitoring at home will help us see how we can progress. I also hope to have our nephrologist help me understand the labs more and help me chart things on my own so when our Dr. retires (hopefully not soon, but definitely before the kids are 18) or when transplants happen, I understand my kids needs more. Understanding the labs can also help me figure out what they need to eat too!! Because we are past diagnosis and “survival mode,” I finally feel like I am at a place where I am comfortable and ready to be very knowledgeable.

So, as you can see we learned a lot and that is only what I processed. There was a lot that I am sure that I missed! We were so grateful for the opportunity to go and learn!! Thanks for being interested!!

xo, nikki :)

PS- I had a moment, a brief one, when the Dr. were describing the lab rats and I thought, “Aww, poor rats!” and had to remind myself that it was for our benefit! Silly, I know?!

Clear

I just got a call from our Dr. the kids blood work is great. Everything is functioning at “normal,” and there has been no change. So the kids are stable, stable, stable. Bentley’s platelets are still low, but higher than 6 months ago, so that is stable. Their kidney function and thyroid function were good. YAY!

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The kids were into their crepe date!

xo, nikki :)

Nephrology Update

Last Wednesday, the kids had their Nephrology appointment. It went well, nothing to report. The Dr. thought that the kids were looking good and ordered blood work. I had waited to do the Endocrinology blood work because I knew that the Nephrologist was going to order some too. I made the appointment for the blood work and prayed we would make it on time. We almost didn’t because there was an intern with the Dr. and it always takes twice as long. We are a special case and the Dr. likes all the interns to learn about us. Anyway, we made the blood work appointment without a minute to spare. The kids did really well even though I put the “numbing cream” on a couple minutes before we walked through the door! Bentley didn’t cry at all! We haven’t gotten the results back yet, but I will update the blog when I do! We went to Chick-fil-a to celebrate getting through the blood work! We were going to go to the zoo too but I had a couple errands to run. On Friday we went to the zoo and it was a beautiful day!!

I don’t know if many of you experience going to the doctor’s very much, but a very surreal thing happened at the past three appointments. Pretty much all the staff remember us and called us by our names as we walked through the door. I knew this day was bound to happen since we see most of these people every three months. But I guess the surreal part was that they were excited to see us and noticed how the kids had changed. One of the nurses that has been with us from the beginning, rejoiced with me because Marseille gave a urine sample, which Marseille hasn’t been able to do for the past two years! It’s interesting to see how these people become friends because they are helping us through our journey. Just some random thoughts :)

Here are some pictures from the zoo. We only saw about a quarter of the zoo because the kids had to go to the bathroom and I promised them they could play on the playground!

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The lemur plopped down to enjoy the sun!
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The Elephants :)
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The park and the zoo go hand in hand!
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Spring is here!
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The kids were sad that the goats were enjoying the sun and not coming up to them!
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Mom take our picture here!

xo, nikki :)

Endocrinology Update

Last week, we had our first appointment of the year! The kids have been very stable so I went with no expectations. They each gained a pound since their last visit, which was late October. They will be getting blood work done next week to check their thyroids, plus whatever labs the Nephrologist orders. Both kids have fallen off the growth chart again.  Since there has been no real progression in renal failure aiding the ability to do growth hormones, the Dr. thinks maybe it’s time to increase the dosage of their thyroid meds. The blood work will tell us if that is a viable option. The Dr.’s concern isn’t just that they are small but in time if they are not growing their brains can also not develop, and we obviously don’t want that. There is no apparent lack of brain development, as the Dr. kindly pointed out as the kids were chatting away, but it can happen over time. Otherwise, it was a good appointment. We don’t need to be seen again until the summer.

Next week, we have a Nephrology appointment, so we will see how that goes. I’m not really expecting too much since we haven’t had any new blood work done. Marseille should be up for an ultrasound. I am hoping that since Bentley just had one late last year, they won’t need another one, but that may be wishful thinking!

Enjoying their school lunches for date night :)
Enjoying their school lunches for date night :)

xo, nikki :)