Today we met with the PT and we found that the way we are currently doing things with her is actually very good. We're definitely using the same frequencies that they would have recommended, so that is good. She did, however, make some suggestions regarding the number of times per day and the length of each treatment. We can try doing shorter treatments more often during the day. We also have a "cough assist" machine which she said we should try to use more frequently as well. In addition, she gave some suggestions for how we should be combining her breathing treatments with the smart vest treatments. It was all very good information.
Today was a rainy day here, so we decided that Ron would drive us over and then he'd drive back to the hotel (1 block over), park, and come back. Well, that didn't go as planned. First of all, the garage at the hotel is VERY small and it is not limited to hotel guests. There are no handicap spots and no elevator in the garage (it's only a few levels, but still) - it's not the best set up I've seen. When the spots are full, they keep allowing cars in and they just park anywhere in the traffic lanes, starting at the top of the garage. We were on the 2nd level and there was a car parked in the lane of traffic blocking us from getting out. Fortunately the garage keeps the keys for these vehicles and they moved that one - it took a while though. We pulled out of the garage and hung a right, but you immediately have to get one lane over and you have only a few car lengths before the light, which was red. The right lane is a turning lane and we had to go straight. Finally got into the appropriate lane and through the light only to come to a stop. We then had to get back into a new right hand lane so we could hang a right into the drive leading up into the circle that is in front of the hospital for valet and drop offs/pick ups. The line to get in was backed up that whole block and wasn't moving. By this time, it was not raining and we could have walked after all, but now we were committed to the drive. We left (we thought) in plenty of time but we didn't get to the front of the building until a few minutes past 10 (the appointment was at 10). I went up to check in while Ron went back to the hotel with the car (the parking situation was worse when he returned). We were called back into a room before Ron returned, so he wound up waiting in the waiting room for us and wasn't able to be in the room with us since the receptionists didn't know where we were taken.
Aside from all that, Peyton is running a low fever today and has had two big long naps. Ron went out this afternoon to a nearby laundromat (note: "nearby" in Boston does not mean quick as noted above). We packed enough for the kids for the 9 days we're gone and Ron and I knew we'd probably have to do some laundry for ourselves. Peyton's latest round of diapers are the correct size, but the manufacturer either had a malfunction or they've reduced the size but are still labeling them as the same as they always were (these are the ones that medicaid allows for her - not a known name brand), so she's been leaking like crazy. We've gone through almost all the pants we packed for her and we still have to get til Sunday! Laundry was a necessity. There isn't a coin operated facility here in the hotel, so Ron located a laundromat near the hotel over by Boston University. We have clean clothes again!! Woohoo!!
Last night Ron picked up food from a local "hidden jewel" (per one website) called The Squealing Pig. They had a lot of pub fare. I had awesome fish and chips. We split a dessert - a Mars Bar Toastie. It was 2 Belgian waffles with a melted Irish mars bar and bananas in between with strawberries and fresh cream on the side. OH MY!!! It was SO delicious. If you are ever in the area, I highly recommend it!!
No sight-seeing today. We're all pretty tired and Peyton isn't herself today. She cried and fussed the whole time we were with the PT today, so I knew she wasn't feeling well.
Tomorrow we see the sleep doctor about her bipap, so I will update about that tomorrow!
No comments:
Post a Comment
We welcome your comments and especially your prayers and support as our family journeys through the ups and downs of life with a special needs and medically fragile child. Thank you for visiting!