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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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?!

NYC in pictures

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 :)

 

Sorry, little blog…

Yes, I have been neglecting you. I’m back now and want to be waaayyyy more consistent.

So, it’s almost Feburary, you may be thinking “What in the heck have you been doing since October?” You probably didn’t say that but I’ll imagine that you did :)

Friends, we have done too much. We’ve done way  too much for comfort, too much busyness, just plain too much. I have felt like that since we went to the beach at the end of the summer.  To some this might not seem like a lot, but for our family it was.

October- I went to NJ, NYC and NY and had a fabulous time. I could not have asked for a better trip! The kids went to Charlotte. Danny got quite a few things done around the house while we were gone. A week long trip takes a week to get ready for and a week to re-coup from.

November- In the beginning of the month we were still trying to get back on track. I had little projects here and there. Then we spent a week preparing for my family to come for Thanksgiving. After Thanksgiving, the kids and I went to my parents new place in FL. Danny came and stayed the following weekend. We also got to see my Uncle and his family, which was an added bonus.

December- We came back from FL, and had Danny’s work party. The next week, I had two Christmas parties and a girls night out.  Then that weekend we had a stay-cation for our anniversary. We hit every thrift store in the upstate up to Asheville, NC. It was a lot of fun. Danny took off work, so we had 5 days together. The house got a makeover, specifically our bedroom :) Which then brings us to the weekend before Christmas, we went to Atlanta and came home Christmas Eve. We like waking up on Christmas Day in our home :) Danny’s parents stopped in for Christmas and had dinner with us, as they made their way back from Atlanta.

Confused…

I am too! Oh, and sprinkle in 4 doctor appointments, an ultrasound, and bloodwork too! Their nephrologist believes that since they are progressing so slowly that transplants will not happen for another 5 to 7 years, if at all!! What a blessing! We know that this isn’t a guarantee  but it is exciting all the same! The next round of appointments will not start until the end of Feburary.

We hope that you are looking forward to the new year too!!

xo, nikki :)

ps- enjoy the pictures from October until Christmas!

Daily Suffering

Time for the next question: daily suffering and pain, watching your children suffer and being powerless to take it away?

I don’t really have a good answer for this one. To be completely honest, I am not a super sensitive mom. This is probably God’s blessing on me. I am sad that Bentley and Marseille have to walk through this but I really don’t think a lot about them suffering or taking it away. I am not trying to be flippant, or uncaring, I really just don’t think about it. Besides giving my children a lot of medicine each day, I really don’t view them or treat them differently. They appear normal and we live each day as I think most normal families do. I don’t dwell on why God has chosen this path for them, and I hope that because I don’t question, they won’t question it either. If anything, I pray that this disease causes them to cling to God quicker than most.

Would I love for them not to suffer? Um, definitely yes! Would I love for them to be healed? I pray for it daily.  If I could take it away I would, but I can’t and no amount of worrying or questioning is going to take it away. God has chosen to bless us with this disease, and I am not saying that sarcastically. I think Laura Story says it wonderfully:

‘Cause what if Your blessings come through raindrops
What if Your healing comes through tears
And what if a thousand sleepless nights
Are what it takes to know You’re near
What if my greatest disappointments
Or the achings of this life
Is the revealing of a greater thirst this world can’t satisfy
And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise

~Blessings by Laura Story

I don’t know if this makes any sense! I love my children but God loves them more, more than I ever can or could. I learned from the minute, literally, that Bentley was born that my children are not mine. I have to trust God completely that He knows what is best for Bentley and Marseille and if ARPKD is what is best right now…. bring it! When Danny and I are discouraged in our situation we always come back to the same thing: it could always be worse.

xo, nikki :)

God’s goodness vs. my life

Here is my emailed response to my struggling friend that asked this question: How do you balance God’s goodness and your life?

While Bentley was still in the NICU, I remember a specific time when I was in the store and I questioned God’s goodness to me. Upon check out I noticed that People Magazine’s cover story was Christina Aguilera and her healthy baby boy. I was angry as I looked at her  face with her newborn. I questioned how God could give her a healthy baby and not me. I was the christian!

Thankfully, my thoughts didn’t last too long as I reminded myself, that I was the christian and I have hope. My greatest need has been taken care of  and I will be in Heaven one day, where every tear will be wiped away and all the pain I was feeling would cease. God is good. No matter the situation, I have hope!

I realize now that as I write these words, I should have praised God that Christina Aguilera had a healthy baby. I could have thanked God that she was spared from grief and for the precious miracle that her son is. I could have prayed for her salvation…. because I am a christian!

Fast forwarding a little bit. I’ll never forget the day that the results came back showing that Bentley’s kidneys were polycystic. I was giving a sewing lesson after I had gotten the news. The mother of my student was encouraging me and reminded me that none of us are guaranteed tomorrow. That statement of truth has helped me so much. I have come to realize that I only have grace for today. I need to cherish today and see God’s goodness in today. I know that this can sound like a lot of fluff, but I have come to realize that leaning and trusting God is the only way that I can get through my troubles.

As I remember who I was and who I am now, I see God’s goodness. It has only been through my circumstances, God’s strength and the Holy Spirit that have changed me. That is how I can look at my children’s disease and see God’s goodness. I THANK God for it because without these difficulties I wouldn’t be who I am today. I wouldn’t know God and love God the way I do without these trials.

My greatest need has been taken care of on the cross and through the resurrection of Christ. I stand on the promise of the day that is drawing near, when the good work that was started in me will be brought to completion and all pain and sorrow will cease. When I will see God and be rewarded for my obedience and hardship <<crazy>>>. I will be with the One I love!

The promise of Heaven is how I balance God’s goodness and my life.

I love you, friend. Keep fighting the good fight with endurance. Do not give up hope because we have a glorious hope. He will give you the strength that you don’t have to walk through this extremely tough trial. 

For the moment all discipline (trials) seems painful rather than pleasant, but later it yields the peaceful fruit of righteousness to those who have been trained by it.  Hebrews 12:11

The effect of righteousness will be peace and the result of righteousness quietness and trust forever. Isaiah 32:17

Keep sharing your heart, letting people pray for you and stand on His promises! God loves you most! Don’t doubt His goodness!

xo, nikki :)