Cardiology check up

So on July 30th Ben and Abby had cardiology heck ups. Normally Abby would not have been due for a cardiology check up until December of this year to check on her PDA closure, but she had been complaining of some chest pains when in the car one day and said that they happened a couple times before when she was running or biking. So, the cardiologist was able to fit her in during Ben's check up day. She wasn't too happy about being woken up at 5 in the morning, but other than that it was good. She had a great check up and was very cooperative with the EKG and echo. And even got to play in the play are with Ben in between waiting for appointments. He had many appointments scheduled that day. The cardiologist said everything checked out well for her and she doesn't need to come back for 3 more years. The pains were not cardiac related, so he's giving her case back to the pediatrician.

Ben also had a good check up and may lose a med! His cardiology check up went well and his heart is looking very good. No problems there. And for once his prograf level stayed the same. No messing with it this time. AND, we get to stay at two times a day since he is able to keep his levels up. Which is great for us because 3 times a day was a little difficult, plus, if he loses his one kidney med, we will have no 2:30 meds at all! Right, his kidney appointment. So, previously Ben had had Stage 3 kidney disease. He has been on Cytra-2 to control it, and drinks water constantly. He is also monitored frequently. He had a kidney ultrasound as well as a urine culture and a visit with his nephrologist at this appointment as well. Joe said they messed up the urine culture because he pooped and it went in it, so they had to do it over. Well, at this appointment, they determined that his kidney disease has improved! He now has Stage 1 kidney disease. And we are going to do a trial of coming off of the cytra and then do labs to see how he does with it. If all goes well, he can stay off it and be monitored to make sure he is still staying well. The prograf that he takes is hard on the kidneys, and he had a hit to his kideys when he was in cardiogenic shock. So he will likely always be monitored by a nephrologist. And he will always be at stage 1 CKD. But, that is much better than stage 3! He also had a holter monitor placed at this appointment. He had much fun telling me "Don't touch my stickers!" And then 10 minutes later trying to take his stickers off. Little stinker :) The next day when it WAS time to take them off, he told me "Daddy said don't touch my stickers!" and would not let me take them off until Joe called him and said to take them off. LOL

Wearing holter monitor before bed

 

At this appointment, they were planning on doing his audiology testing. But that would have been at 2 pm, and I said that would be too late because he would not have been able to nap and would likely be crabby or sleeping for it. So we rescheduled that for the end of this month. Apparently, the ENT likes to make sure that kids with ear tubes have an audiology exam every 6 months to make sure they are still hearing well.

The other thing that has changed is Ben's PT appointments. We had his 6 month review today and decided to increase again to once a week. He is doing really well, all things considered! But, he is still not doing a few things that a typically developing 2 year old would be doing at this stage. Namely, going up and down the stairs holding on to a railing, jumping and getting air under his feet, getting up from half kneel and there was one other thing I can't remember. This is all due to some low tone he is still presenting. I'm glad he will be getting more services to catch him up as quickly as possible before he turns 3. We also will be getting a trampoline through EI, to help these skills. Well, provided EI approves it. Hopefully they do because our insurance has been going crazy with the denial letters..

He doesn't let a little thing like a holter monitor slow him down

It can even go on the swings