Clinic day

Well, Ben had a clinic appointment today. Every appt has it's own labs. So, he had a repeat of the labs he just had done on Friday. His Prograf level has gone up just a little. Not enough though :( It is at 7.9 now and his target is 10-12. So, we upped his dosage of prograf. The good news is his magnesium levels have gone up, so we get to come down a little on magnesium. But, his hemoglobin levels were low, so we had to go up to twice daily iron. So, 2 ml a day. And his potassium was too high. So, we have to not give him as many potassium rich foods, which is REALLY hard. A TON of his favorite foods are high potassium foods. Beans, avocados, bananas and so many more. This is going to be more difficult finding low potassium foods! They are talking about putting him on a drug to lower his potassium levels. We will probably meet with a nutritionist if they decide to put him on a low potassium diet. It is very difficult to figure out exactly how much he needs since he is growing. 19 lbs 3 oz now. He lost about 3 oz from his GI illness.

The other thing is, they want us to do a renal ultrasound. So, we have labs next Monday and then again on Tuesday and the ultrasound on Tuesday as well. Then they will decide if the kidney team needs to keep following him, or what the next step will be. I am a little worried about the fact that his potassium level is raised and his hemoglobin is low. I am hoping that whenever he gets over the diarrhea, that his prograf levels will stabilize and then he can lower his prograf dose which may help lower the potassium levels. That is my hope anyways. As long as all is good on the cardiology end, Ben also gets his DTaP shot next Wednesday.

We also have his speech and Occupational therapy re-evaluation this Friday (Sept 14). I had noticed that he wasn't really using a pincer grasp to pick up foods, as well as that he has difficulty getting food to his mouth. His PT also noticed that he wasn't really moving food from side to side in his mouth. He is, however, making progress with his physical therapy goals. He started army crawling a month ago and is going from a sitting position to a push up position. We are now working on getting from crawling position to sitting position as well as in the 4 point crawling position. We have his 6 month review of his goals and progress on Sept 22. We will discuss how well he is doing and any further therapy. But, the PT has told me she doesn't think she would discharge him at least until he is walking. It's just easier to keep going than to discharge only to find out he still needs help learning to walk or move around later on.

Abby also had her 6 month check up from her PDA closure. She is doing great and the cardiologist said she doesn't need to be seen for 3 more years, at which time he will also see Klara and evaluate her PDA as well. Believe me it wasn't fun getting the kids up so early today! Abby was up by 5:30, Klara was up by 6:00. Joe took Abby and Ben with him and needed to be to Lurie by 7. I had to get Klara to school by 7:30 so I could work. So, everyone is exhausted, overtired and crabby today. Especially Ben and Abby since neither of them got great naps. Klara, at least, napped at school.

So, that's where all the kids are. Generally, everything is going well. We have lots of appointments coming up for him in September and then a genetics appointment in October and then his NICU follow up, and another clinic visit and then his 1 year pediatrician check up in November. Now we just have to make sure nothing is wrong with Ben's kidneys and everything will be great!