Ultrasound Results

Yesterday, I got the call from the doctor for Bentley’s and Marseille’s ultrasound results. Everything came back about the same and  progressing normally, meaning they still have the disease and they are digressing at a rate which the doctors expect. Both the doctor and I agreed that about the same was good!

Both of their results were similar:

-Their kidneys are getting larger

-The liver was getting bigger

-Their cysts are no longer microscopic but can visibly be seen and measured.

Overall, we can’t complain. Everything is “on track” — kind of weird to say, since “on track” leads to kidney failure!  That’s it for now. No appointments until the end APRIL!! YaY! Thanks again for praying for us!

xo, nikki :)

Results

The Dr. called with their blood work results. Their kidney function was fine. Their vitamin D was fine. Whew! Their thyroid function was fine, but their thyroid stimulating hormone was high. So, the Dr. said that the endocrinologist will look into that. We should have the results of the ultrasounds soon too. We are grateful that their blood work came back with good results. In light of the good news, I decided to do a fun update on the kids.

Let the record show… I LOVE MY KIDS!! Not that anyone doubted!

Bentley, the elephant, never forgets! He is very cautious and thoughtful. He is in the “ask a million and one questions” stage. He loves to do puzzles and is still really into Cars. He is pretty quick and smart. I love to watch him use his imagination, he is getting really good at pretending!

Here are some things that we hear daily:

“So, Mom, what did you do today?”

“Why?”

“How?”

“What are we going to eat for…?”

“Can we be awake?”

“This is hard school, Mom!”

 

Marseille, the hummingbird, is so little and busy all the time. I mean all the time! She is definitely talking more and very well, I might add. She is very dramatic, observant and agile. I love that she makes up her own songs and she loves to dance. Her new favorite  thing is the movie Tangled. It’s fun to watch her get “into” something. It all started because I said, “Look Rapunzel has crazy hair.”Marseille chimed back, “Just like Marseille!”

Here are some things we hear daily:

“It’s for my birthday!!!”

“My birthday is coming up in July!”

“Aww. It’s so cute.”

“It’s my favor-ite! I like it soooo bad!”

“Taa-ddddaaaaa!”

“That is so cool!”

I’m so incredibly blessed and grateful for each day that I get with these two! Believe me, there are days that I have to fight to remember that, as they are hitting and yelling at each other! But more often than not I am thankful!

xo, nikki :)

Jelly Belly

Well, we are still in the middle of the stomach bug, but had an appointment to keep. The kids’ ultrasound appointments were at 8am on the 21st. They are not very pleasant to reschedule. I thought, “we’ll probably get better and then get sick just because we went to the hospital,” and “the kids might get sick again by the time we would get an appointment.” So we went.

I had been sleeping in the guest room when Danny got sick, so I haven’t been waking up to an alarm. I’m grateful that I automatically woke up at 6:45am, but I quickly realized we were going to be late if I didn’t get up! I ran and got dressed and got the kids dressed. Waking them up in a frenzy didn’t give them time to put together that they weren’t allowed to eat.

We made it to registration on time (we have to register so they can be admitted to the hospital if anything goes south). Time was passing quickly and no one was registering us. Finally, the woman called us back and she was very apologetic. It was already 8am and we weren’t even to the first waiting room yet. By 9:30am we got through both waiting rooms (the radiology waiting room, and then the pediatric radiology waiting room).

While waiting for the ultrasounds to start, I asked Bentley if he remembered getting these done, because he seemed to be getting nervous. I told him that they were going to put jelly on his belly and then he did remember. The kids did great! Both of them! Bentley went first, and then Marseille. Thankfully, she saw how calm her brother was and she did just as well as him! She kept asking the technician, “You done yet?!” To date, Bentley has had four ultrasounds and Marseille has had three. This was by far the easiest set! It’s kinda sad to say, but I’m grateful that they are used to them.

After the ultrasounds are finished, we have to wait for the technican to write up the results and have the radiologist read them. It usually takes about an hour. So, at 11:30am we left the hospital. We were all very hungry at that point. We went to McDonalds because it was right next to the hospital. Poor Marseille lost some of her McDonalds about 2 minutes from home.

Here is a peek into our appointment:

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xo, nikki :)

All in a day’s work

The stomach bug conquered this family. Poor Marseille lost it during dinner. I am so thankful that today I was actually able to get some stuff done. I began the day by making meals with all the wonderful produce we have been getting from the Noisy Rabbit. Because I was out of commission last week, we had two full weeks of produce sitting around. Yikes! Saturday night, I made my favorite soup, Ribollita. I spent most of Sunday trying to find recipes to use of the remaining produce.

So, today, I made freshly squeeze grapefruit/orange/mineola/clementine juice, sweet potato gnocchi, roasted some red peppers. For dinner I made a tomato soup that used a head of cabbage and sweet potatoes. I also made my own croutons for the soup. I had to run to the store to get Strawberry Fanta for Danny because that was the only thing that sounded good to him. I ran the dishwasher twice and did two loads of laundry  A.N.D…

I am pooped. I sat down to watch some tv and fold the laundry. I even scooped myself a little bit of frozen yogurt, but I didn’t finish it. You know I’m sick if I don’t finish ice cream.

Being sick really does wear you out!  I can’t wait to feel like myself again! I can’t wait for my poor little family to be better. On the bright side, I was able to use a lot of good produce!!

xo, nikki :)

Bible Time

Each morning, I have been having “bible time” with the kids. I read their story bibles to them and we also sing a couple songs. They have really enjoyed the reading part, and we are working on the joyful singing! I am trying to teach them the discipline of reading each day, and I also want them to know that I practice what I preach.

Train up a child in the way he should go; even when he is old he will not depart from it. Proverbs 22:6

Here is a video of Marseille re-telling her version of Abraham and Issac : Marseille pink pinky. She is quite into it!

Here is one of the songs that the kids have enjoyed learning: Never Once by Matt Redman

xo, nikki :)

Stomach BUG!

Wow! I haven’t been this sick in a really long time. Actually, I don’t think I have ever been this sick before and I’m glad. It’s really hard to take care of your family and home when you are confined to your bed and bathroom. This has been quite an experience for me. I have had a stomach bug/ flu before, but never one that lasted for FOUR full days. I lost 4lbs in those 4 days too! Not a good way to lose weight!

Yesterday, we had to call Danny’s mom for back-up. Danny’s work is understaffed and swamped right now, so he can’t take any time off, unless of an extreme emergency. I’m grateful that my mother in law was able to come so quickly! She has been able to do laundry and many other things that haven’t been taken care of since last week. Most importantly, she was able to look after the kids. Whew! They were so bored sitting next to me, watching movies. Thank you, Mom!!

Well, just wanted to clue you in on where we have been! I am hoping to celebrate Valentine’s Day with the family this week, since we didn’t get to do anything for it. I was very, very bummed about it too, but there was nothing I could do!

Also, in other news, the kids’ endocrinology appointment is April 25 at 9:15a. I am hoping that the office gets a cancellation for an appointment sooner!

xo, nikki :)

Medical Update

Well, some good news. Bentley and Marseille’s blood pressure was actually good!! Marseille only had to have her blood pressure taken once, let me say that again… ONCE!! We were all so proud of her. Bentley had to have his taken twice because it was a little high, and then it was fine. So, yay, what an answer to prayer!

On the flip side, both of the children have to see endocrinologists so we can see if we can pinpoint why they have stopped growing. Both of them have plateaued and Bentley lost a little weight. I’m not sure when we will be seen but I’m sure it will be fairly soon.

Since their blood pressure was good, the Dr. wanted us to get the blood work done that day. Ahh! I wasn’t prepared for that. I wanted to get a numbing Rx for them, so they wouldn’t be so scared. I will have to get it before their next round of blood work because it was awful. Bentley was actually screaming. This is not normal for him, but I would probably do the same thing! So, overall, it wasn’t a bad visit!

We should get the results sometime next week. Their ultrasounds are scheduled for Feb 21 at 8am, so if you could be praying for those, we would be grateful! We also want to thank everyone who prays for us. We really appreciate it and we experience much peace because of your prayers! I’ll update with the endocrinology appointment as soon as we have the dates.

xo, nikki :)