Overview

On Sunday, Greg and I took Caden and went to Napa for three nights. Greg's parents came down to stay at our house with Kyler so we could enjoy some quiet time. I am not ready to leave Caden overnight with anybody yet so he stayed with us. But, on Monday, Greg's parents and sister took him for a few hours so we were able to get some true rest and relaxation at the spa of the resort where we were staying. We were able to get massages and generally relax for several hours. It was great. On Tuesday, Greg's parents had to go home, but my parents were able to get to our house and take over with Kyler until we got home on Wednesday.

Greg actually rode his bike from our house to Napa on Sunday and I drove over and met him there. He also went on a bike ride on Tuesday and decided to ride his bike home again on Wednesday. It was almost 100 miles each direction! And, when he got home on Wednesday, he had to do a pretty quick turnaround to get to the airport to fly down to Southern California for work that afternoon. He didn't get home until late Friday night.

We've had some success with potty training with Kyler! He definitely has a ways to go, but he is headed in the right direction. He will poop on the potty about half the time now which is fantastic! We just keep putting him o the potty every half hour and make him go pee at least. He's starting to get the hang of it and I am grateful!

On Thursday my parents left to start their drive home back to Coeur d'Alene and took Kyler with them. They are spending a few days at my sister's house in Portland before heading all the way back home. I leave this next Wednesday to drive up with Caden. I will also spend a few days in Portland and then will drive the rest of the way to Spokane. I am going to stay with my sister there and my parents will bring Kyler to stay with me once I get up there. It will make my drive up north a little easier to have only one child with me so that is nice. However, in the meantime, we do miss Kyler and his energy around the house. Thursday and Friday seemed so quiet with just me and Caden here.

We kept busy with appointments both days though. On Thursday, Caden had an early appointment with his GI doctor. It was just a follow-up appointment to see how things were going. I let her know my frustration with the lack of communication from her office and the fact that they didn't schedule the swallow study like they were supposed to. She was very apologetic about this. We are supposed to get another study scheduled for three months so we can see how Caden is doing at that point and make sure he is still not aspirating. So, in order to assure me that it would get taken care of, she had me wait in the exam room while her staff made the necessary referrals. The medical assistant told me I would be getting a phone call from the scheduler at Sutter Memorial Hospital in Sacramento to get it set up. We also decided to increase the amount of formula we use to fortify Caden's milk with. So, the dietitian came in and told me she had faxed the order to our home medical supply company to get it taken care of right away. I needed to have it delivered before we leave on Wednesday. However, as of Friday afternoon, the medical supply company had not gotten this taken care of because they said they had not received the faxed request from the doctor's office. So we'll see what happens...

Later that morning Caden had a follow-up appointment with Dr. Van Gundy, our cardiologist. He gave us the results of his last echo which was fantastic. He said all the pulmonary pressures look completely normal, the coarctation repair looks perfect and he is very happy with what he saw. He told us to wean one of the medications down to once/day from twice/day so we're on the right track to getting him off everything. Also, Caden weighed in at 12.2 pounds! This moved him from 3rd percentile to 10th percentile in weight! That's pretty exciting for us. It was a great appointment and wonderful to hear such good news!

On Friday, Caden had two more appointments. First, the child development specialist from Easter Seals came out for her first session with him. She played with him for almost an hour and he did really well with her. He responded well to the different stimulation she gave him with the toys and books. It was very cute to see and it helped give me ideas of things I can do with him to encourage different movements/behaviors as well. She will visit us two to three times/month for now and in six months re-evaluate to see if she should come more often.

And, then our last appointment for the week was with the feeding therapist. I had been looking forward to seeing her all week. Caden was doing pretty well taking his pacifier dipped in milk. But as soon as we started to use a bottle nipple dipped in milk, he would fight it. He could see it wasn't the same thing and he wanted nothing to do with it! So, Stephanie suggested a few things to try with him over the next three weeks while we are gone. Hopefully we will get him to take the bottle more easily and he'll be wiling to swallow. Stephanie said he was doing some appropriate movements with his mouth and tongue, but he would need to get better at them. And, we need to move the gag reflex back. Right now, he's okay with something going into his mouth to about the middle of his tongue, but if it goes past that, he gags. So we need to move that reflex back so the bottle can go further back in his mouth and he can eat. This definitely isn't an easy process, but she was really optimistic and thought he would progress nicely in time.

Lots of things going on and lots to do to prepare for our departure on Wednesday.