Monday was Chris' last day home so we went to breakfast then he dropped me and Eden off at PT. When he came to get us (he wanted to check it out) we were done and Eden said," I did such a good job Daddy!" It was damn cute. She then proceeded to walk all the way to the car with the walker, this is the longest she has walked yet. When we got home she was over it and would not walk any more. Oh well, like I keep saying, a bit more every day.
In general, PT is going well. Rainbow Rehab is taking very good care of Eden. They have a great set up and the exercises seem just right. Leslie and I have a lot in common, she also has 11 year old twins and her daughter plays soccer. So the time passes quickly for all of us. Eden watches TV, Leslie and I chat and Eden lets Leslie do what she needs. We have been swimming every day at the JCC to help with pool therapy. Eden moves well in the water - she walks all around and even does the stairs - and of course the entire family enjoys the swim time. We have all been doing laps together. Ayla kicks all of our butts.
Chris went back to work today and I am happy to report I did not kill any of our children. I took Eden to PT, then we all went to buy Ayla her soccer gear (can't believe she starts tomorrow!) then we all went to lunch at Friendly's. Eden was between me and Jacob and kept steeling his food. It was pretty funny. They all joked around a lot, they got a bit loud but hey, it is Friendly's! It was just great seeing them have fun together. We came home for some quiet time and I managed to get Eden to nap around 4pm. She is not sleeping normal at all. Late naps and wakeful nights. If we try and go without a nap she crashes early eve. Still always an adventure with her sleeping patterns. Before any of this started (her first surgery was a year and a half ago) she was an amazing sleeper. 8 pm to 8 am, no interruptions, to bed nice and easy. We have not been able to get back to that, we will see where we end up after this is all over in a few months. Back to today...Chris made it home for dinner so we waited for him to go for a family swim and he helped do the PT in the pool while I played with the kids, then we all goofed around for a bit. Tomorrow he has a late meeting so we will see where the day takes us. Again, I am fairly confident when Chris gets home he will still have 4 kids intact.
The Dr's office called this am and said they have to reschedule her next appointment because Dr Standard will be away on vacation the week they scheduled us. Oops. They wanted to move us to the following Th which would be three weeks with no appt. I said ah, no. We only had one post op visit and are still figuring this all out. We are not comfortable going so long with no visit. The scheduler said the Dr looked over the schedule and said it is fine to move all the patients. My reply, the Dr may be comfortable with it, but I am not. She promptly told me she would have the Dr's asst call me. Around 4 pm they finally called and the asst gave me the same shpeil, and I gave her the same reply, Those of you who know me well know my attitude, and they were not getting away with this. I found it totally unacceptable to think we could go almost a month with no visit when they were the ones who told us it is critical to come every 2 weeks. Maybe if we were a bit further into the process we would look at this as a relief that we do not need to make the trip, but right now we are winging it and the only beacon of light are these visits telling us we are heading in the right direction. I was put on hold not once but twice, and eventually they said we should come in this week so there will be no long gaps in visits. I would much rather go to early then too late, so I agreed. That said, MD here we come...we will be there all of Thursday. We are warned the Dr is booked solid because he is cramming in patients before he leaves for vacation. So it should be a long waiting time, and the kids will be with me. Chris is a maybe, he has to see what the work day brings. We had a PT session booked for Fri in MD to verify things are on the right track here. Clearly I am not going down Th and Fri. I am trying to change the appt to Th, but if I can not I will just go the following week. I am pretty confident we are doing well here, so giving it two weeks may actually be better anyway, more time to make sure we are staying on the right path.
Eden stays in good spirits. She is trying to do her own PT which is hysterical. Turning the fixator is totally her job, she does not like when we do it. She is starting to cooperate with wearing the foot plate and keeping her foot elevated and the knee brace on at night, she gets it is all to help her be more comfortable. But I really do not get how being immobilized with a sweaty plastic thing on her foot sitting on a foam egg crate can be comfy. No wonder she wakes up!! But these little cries she makes - usually at night, it is so cute we almost laugh. It sounds more like a tiny animal than a little girl. Better to laugh then cry...She is trying to hang tough. She is still scared so we talk a lot about trust and we are here to help her and won't let anything happen to her, like falling and getting hurt. She just needs to try and walk and put weight on her leg. It will make this easier for all of us.
So to sum it up, if you are looking for us, there is a good chance you can find us at the JCC pool!! Will write again Th after the visit, or more realistically Fri after I recuperate from the long day we will have.
Thx for reading! As Eden says, PEACE
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