Yesterday, we had a nephrology appointment and all is well. Whew! I have begun taking the kids’ blood pressure at home manually, so I was curious to see how I was doing. My collection of readings seems in line with the office’s, so I was happy. Though, I did not bring in my numbers because I am not confident enough doing it, that I didn’t want to be discouraged. Any way, we figured out that Marseille’s diastolic numbers can tend to be a little low, which could explain why she complains of headaches a lot and gets tired so easily. Yes, I know this is not really exciting news… We are going to continue monitoring until December and then decide what steps need to be taken next.
Okay now onto the exciting news… in June the kids had to get echo-cardiograms. Due to their high blood pressure, we want to make sure that there is not damage to their hearts. It has been two years since their last echo and the results of those confirmed that Bentley had thickening tissue on his left ventricle. But since careful monitoring of his blood pressure and medications… plus God’s kindness, Bentley’s heart has healed and it is soft and normal again! I was so excited to hear that news. Marseille’s heart is still normal, so I was grateful to hear she still does not have any damage. I tried to explain to Bentley, that God has used medicine and the doctors to heal his heart and he was so confused. Considering, he had no idea that there was anything wrong!
Also, while we were out running errands, two people actually apologized to the kids when they guessed at the kids age. Our kids get noticed everywhere they go, so being told that they are “so small for their age” and trying to convince people that they are the age that the kids say they are is not easy task. Especially, when the kids are right there! Well, this can be very frustrating to me because I do not want them to be self-conscious of their size, which they have begun to notice on their own. I was so grateful when the two woman that asked their age, where kind enough to correct themselves to the kids when they made comments about their size and age. For me, that was pretty exciting too!
Well, that is our big news! Hope we didn’t let you down!
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!
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
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!!
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!!
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!
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?!
We had a wonderful weekend enjoying our risen Savior and his creation! Besides spring springing, other things have sprung too!!
Danny’s aunt passed away on Friday, which was very hard on several accounts. Mostly, because she is gone, but also because for about the past two months I have been planning a HUGE surprise for Danny. HUGE. Well I had to spring my secret early due to funeral plans. Ugh. Doesn’t that sound horrible?! But it was reality. When Danny told me that he was going to put in for time off even though we didn’t know the exact day of the funeral. I had to reveal that I had called his work and took time off for him next week (this week). Then I slipped and said we are going on an airplane so this is something that we really can’t change. Danny was shocked. He was so surprised and excited! I knew that night I was going to have to tell him everything because he would be unbearable… guessing and hinting. So when he walked through the door, that evening I told him that we were going to NYC to attend a conference for parents and care givers of children with ARPKD. He was amazed and excited. I was very excited and relieved to not hide my excitement anymore! He has never been to NYC before and the conference ends on Sunday, which happens to be his birthday!
So, there is the long and short of it! This Thursday, we are headed to NYC to learn more about ARPKD and CHF and to do lots of networking…. plus see NYC!!! Please pray that it would be a great time and that we would learn lots and make connections plus that the weather would be good also safe travels. Thank you so much!!
Besides the death of Danny’s aunt, we had a WONDERFUL weekend! We visited the Biltmore, had Easter service with our church family, lunch with friends that in our eyes are family and Marseille and I got haircuts! There was much talking, laughing and silliness. I imagine one day, we will be doing lots of that with our Savior! Thank you Jesus for dying on the cross for our sins and victoriously rising again to bring us back to God! I hope that all of you enjoyed your weekend too!!
xo, nikki :)
ps- Could you also pray for Danny’s family, his Aunt’s memorial and burial is this Tuesday and Wednesday? Thanks again!!