Exciting news :)

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!

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Well, that is our big news! Hope we didn’t let you down!

xo, nikki :)

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 :)

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 :)

 

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!

Medical Update

This summer was fairly slow for Dr. appointments. They seemed to all fall in a two week period. Everything is still stable, but Bentley’s recent blood work came back abnormal. His platelet count is low, as well as his white blood cell counts. This has to do with his liver. The GI has ordered a ultrasound for him on October 29th. At the time of getting these blood work results, they scheduled the utlrasound a month out, so even though it is abnormal,  it isn’t an emergency. Marseille’s blood work came back good, so she is still plugging along.

They both grew 2 inches this summer, so thanks growth hormones! Their thyroid meds and blood pressure meds are still stable so we are not changing any of their prescriptions. Which is great!! We have been six months with out any prescription changes! This month, Bentley has not wanted to drink one of his medicines. We have had to change the frequency of that prescription, but it’s still the same amount in a day, so I don’t really consider that a change.

Otherwise, the Dr’s are please and so are we! If you could please pray for Bentley and his ultrasound we would appreciate it.

xoxo, nikki :)

PS- A friend asked how we were doing with the recent results. We are fine. We are not anxious about it, especially since the Dr. didn’t schedule a next day ultrasound. Problems with their livers are not unexpected, if anything it is a miracle that it hasn’t happened earlier!

Stronger

Redeeming Love by Francine Rivers is a book that I listen to over and over again. It has been a book that has helped me understand God’s love for me. About two weeks ago, I was listening to the book in the morning and this particular section of the book spoke to me.

A: Do you ever get the feeling that God is playing some horrible joke on  you?

M: No, he does it to make me stronger.

A: You’re strong enough

M: I’m not strong enough for what is yet to come.

Later that afternoon, I got a call from our Endocrinologist. The Endocrinologist and the Nephrologist talked for a while and decided to end the shots. The company that was going to be helping us with the medicine decided that we didn’t meet their criteria (after we had already received approval letters) Since we don’t have a way to get the medicine, the doctors decided to withdraw the Rx.

It won’t hurt the kids to be taken off of it since they haven’t been on it very long. The kids are responding well to their thyroid medicine so that should help them grow some. Our appointment in August will begin the intentional tracking of the kids growth.

This was a huge blow. I couldn’t believe that God would have me give the kids shots, contact insurance, and different companies to try and work things out. All of which are things that I fear. But then the words of the book that I heard that morning came back to me.

He did all of this to make me stronger and to depend on Him more, to show me that He give me grace and most of all to show me His faithful love. But the thing that stood out most was I am not strong enough for what is yet to come. I can look back on this trial and know that God was in it and He will help me in what is yet to come.

So, as quickly as the shots started, they are ending. Thank you to all of you who prayed for and asked us how they were going. We felt very cared for. The kids do great with them and we have about a week and a half to two weeks left of medicine.

xo, nikki :)