O What A Glorious Day!

If you enter our house on a given day, you will hear music at some point in your stay. It is usually on in every room, sometimes at the same time! We love it! Here is a little snippet of how much Bentley and Marseille enjoy it… and food!


Marseille enjoys singing and dancing… just not obeying ;)



Bentley update

Thanks to all who were praying and thinking about us yesterday. We did have to go to the ER with Bentley because he was throwing up green bile. I talked with two on-call doctors (the GI and Peds) and that is what they had suggested.

Since the middle of April Bentley has thrown up one morning every 6-9 days. He wakes up around 6am with sharp pain and then vomits 2-3 times and is normal, literally back to normal by 10AM.
This particular episode, he woke up at 6am, vomiting and continued to vomit 5 more times. Every time he took small sips of water, he would throw it back up. He had gotten to the point where he was throwing up green bile, and that is when we got concerned. But by the time all phone calls were returned and we were at the ER and then finally seen by the ER Dr. It was 9am and he had turned the corner, the Dr. saw nothing wrong with Bentley and sent us home. Always my concern with bring them to the ER! I think that Dr. thought we were over-reactors by some of the comments he made. Oh well, my hope is to never see him again :)
I explained to him that I had been charting these episodes and that we were going to the GI soon. Which in return said that they would be able to pin point better what tests to do, because he wasn’t going to do random tests to try and find something, which I can appreciate.
Marseille has a GI appointment on Tuesday, which the Nephrologist told us to bring up Bentley in that appointment. All the Nephrologist’s testing came back stable, so he is thinking the GI can help us. So we shall see :) Praying that we can have some clue as to what’s going on with little to no testing.
Many of you have asked how you can help and how we are doing. We are really doing fine. God’s grace truly is sufficient in our time of need. I have not felt overwhelmed or discouraged by any of this. It’s definitely not fun, but it’s a part of my life! We don’t have any needs at the moment. Because these episodes are so far apart, we are still able to get around and do things, even the day that he has them (though we usually don’t do anything those days!)
One thing that I do ask is if you are interested in watching Marseille while we have testing and the like done, please email me. This maybe spontaneousness as well as planned. Thank you!!

Nephrology Appointment

Well, we had a good appointment today. Bentley and Marseille are both stable. Their organs looked good– as good as they can– with little to no change. What a blessing.

We were ready for this appointment because Bentley has been throwing up randomly and has been complaining of being tired a lot. He had 3 throwing up episodes in past four weeks with no real sickness attached to them, and no new unusual foods. I thought that his blood pressure medication might be too high for him now, but his blood pressure was good when they checked it so his medicine is going to stay the same. At first it was high and they had to recheck it.
I was really proud of Marseille, it was the first appointment in her entire life so far that she didn’t cry the whole time. The Dr. actually got to feel her stomach :) YAY! Though she did cry the two of the three times that she had to get her blood pressure taken… we’re working on that! Marseille’s blood pressure was still high after her not crying reading, so we have to up her dosage.
Anyway. Another good thing that came out of the appointment, in a round about way, was their blood pressure prescription. We no longer have to get it compounded, this will save us a lot of money and time! Because compounding is expensive for pharmacies they don’t take insurance, but now since Marseille’s dosage changed we can just get the pill form. And because we live in America and a lot of people have high blood pressure, it is on the $4 list at most pharmacies!! What a huge blessing!! I just have to crush it for them :)
Now on to the issues! Both Bentley and Marseille came back with high CO2 counts. The Dr. is thinking that they might have Respiratory Acidosis. Basically Respiratory Acidosis is an acid imbalance in the body caused by breathing problems. There is an excess of CO2 and if forms an acid in the blood. The “remedy” for them is sodium bicabonate or an antacid.
The Dr. was also concerned with how small Marseille is. She has not grown much in the last year and Bentley has capped off too. PKD does make children smaller, but not as small as Marseille. Danny’s and my heights were factored into his thinking, but the high CO2 can definitely be contributing to her size. He was okay with their weight, just not with their growth. They ordered more blood work for their blood gases and to get a more accurate CO2 count. The Dr. said that they would call with the results and they scheduled our next appointment for August.
So, we drove over to the hospital to have the kids get their fingers pricked. As soon as we stepped into the room to get their fingers pricked, Bentley put his head down and said very quickly, “I don’t like these people!” and then began to wail. The respiratory lab workers were definitely not used to drawing blood from kids, but the kids left on good terms :)
So, overall it wasn’t a bad visit! We will let everyone know the results!
Thank you again to all who prayed for us this morning and continually lift us up in our prayers! We are grateful :)