This week has turned out to be pretty crazy, so don't be alarmed if I don't blog over the next day or two. Naturally, there are some tear-jerker posts lined up for the BIG DAY! :)
Abby had a marathon day of appointments on Monday. First up was the swallow clinic, which is where her feeding therapist sees her. It was anticlimatic, since Abby has all but stopped taking solid foods by mouth at this point. The funny thing is that she is drinking milk out of her cup with a straw very well! The therapist was impressed by this and said to just keep working on the solids. It just seems to be one step forward, ten steps back with that. Hopefully, we'll move forward again soon.
Next, we went to ENT (different building...different parking lot...additional parking fee...story of my life!) and poor Abs had some mean things done to her ears. Basically, the nurse practioner suctioned all of the goop out. Lovely, I know. She did say that the infection seemed to be going away, so Abby must be responding to the steroid ear drops. The NP also put some ointment in to aid in that process. "Hate" is not a strong enough word to describe how Abby felt about the ENT appointment. It took two people to hold her down while the ENT worked, and we probably could have used a third. She was not a happy camper.
Abby's final appointment of the day was for her helmet. She got another scan done and the tech discovered that Abby had only made 2 mm of growth in the last month. Translation: she's done! Woo Hoo! It was pretty exciting to know that she is helmet-free forever more. A helmet may seem horrible, but it really wasn't that bad (in the grand scheme of things, I suppose) and the time seemed to fly by. Now, on to bows!!!
We noticed something funky going on around Abby's g-tube on Sunday night and called the GI on Monday. Their office is one where you have to leave a message and wait for someone to call you back...but I finally called back today when I hadn't heard anything. We described what it looked like to the nurse that we were finally able to talk to, and she confirmed what we thought--a granuloma. This isn't a big deal and is pretty common with gtubes, so the nurse called in a corticosteroid cream for Abby and they'll just see her at her next appointment.
Matt told Abby that she wouldn't be able to play baseball with all of the steroids she's been on recently! (Precautions for surgery, ear drops, and now the cream!)
All in all, Abby really is doing very well. These minor issues are really nothing compared to what could happen. I'm not looking forward to the start of cold and flu season (Have you gotten your shot???? If not, please stay away from Abby!! I'm not interested in getting in a vaccination debate...I'm just protecting my baby.) because it means isolating Abby again. :( I believe she'll be getting her first Synagis shot in November, so that will begin the hibernation.
I know most of you don't get how careful we have to be. Very few of you have seen us out and about. Just to give you a little glimpse into our world...germs are seriously constantly on my mind. If we take Abby out to a restaurant, we bring our own high chair. I then use Lysol wipes to thoroughly clean the table (and underneath) before putting down a disposable placemat. If we go to the grocery store, I clean any part of the cart Abby might touch, then put down the cart cover over top. If someone touches Abby's hands without washing or using hand sanitizer, we clean her hands. If her stroller tray is touched with unclean hands, we clean it with Lysol wipes. If I touch another child, I wash my hands before I touch Abby again. We also clean all of Abby's toys before giving them back to her if another child has touched them.
Yeah, I know. I sound ridiculous. Maybe, but that ridiculousness has kept Abby relatively healthy over the last year. When a common cold could kill your daughter (and almost did), you tend to be kind of cautious. I hope none of you are ever faced with that constant threat. It is always on my mind.
Abby had a marathon day of appointments on Monday. First up was the swallow clinic, which is where her feeding therapist sees her. It was anticlimatic, since Abby has all but stopped taking solid foods by mouth at this point. The funny thing is that she is drinking milk out of her cup with a straw very well! The therapist was impressed by this and said to just keep working on the solids. It just seems to be one step forward, ten steps back with that. Hopefully, we'll move forward again soon.
Next, we went to ENT (different building...different parking lot...additional parking fee...story of my life!) and poor Abs had some mean things done to her ears. Basically, the nurse practioner suctioned all of the goop out. Lovely, I know. She did say that the infection seemed to be going away, so Abby must be responding to the steroid ear drops. The NP also put some ointment in to aid in that process. "Hate" is not a strong enough word to describe how Abby felt about the ENT appointment. It took two people to hold her down while the ENT worked, and we probably could have used a third. She was not a happy camper.
Abby's final appointment of the day was for her helmet. She got another scan done and the tech discovered that Abby had only made 2 mm of growth in the last month. Translation: she's done! Woo Hoo! It was pretty exciting to know that she is helmet-free forever more. A helmet may seem horrible, but it really wasn't that bad (in the grand scheme of things, I suppose) and the time seemed to fly by. Now, on to bows!!!
We noticed something funky going on around Abby's g-tube on Sunday night and called the GI on Monday. Their office is one where you have to leave a message and wait for someone to call you back...but I finally called back today when I hadn't heard anything. We described what it looked like to the nurse that we were finally able to talk to, and she confirmed what we thought--a granuloma. This isn't a big deal and is pretty common with gtubes, so the nurse called in a corticosteroid cream for Abby and they'll just see her at her next appointment.
Matt told Abby that she wouldn't be able to play baseball with all of the steroids she's been on recently! (Precautions for surgery, ear drops, and now the cream!)
All in all, Abby really is doing very well. These minor issues are really nothing compared to what could happen. I'm not looking forward to the start of cold and flu season (Have you gotten your shot???? If not, please stay away from Abby!! I'm not interested in getting in a vaccination debate...I'm just protecting my baby.) because it means isolating Abby again. :( I believe she'll be getting her first Synagis shot in November, so that will begin the hibernation.
I know most of you don't get how careful we have to be. Very few of you have seen us out and about. Just to give you a little glimpse into our world...germs are seriously constantly on my mind. If we take Abby out to a restaurant, we bring our own high chair. I then use Lysol wipes to thoroughly clean the table (and underneath) before putting down a disposable placemat. If we go to the grocery store, I clean any part of the cart Abby might touch, then put down the cart cover over top. If someone touches Abby's hands without washing or using hand sanitizer, we clean her hands. If her stroller tray is touched with unclean hands, we clean it with Lysol wipes. If I touch another child, I wash my hands before I touch Abby again. We also clean all of Abby's toys before giving them back to her if another child has touched them.
Yeah, I know. I sound ridiculous. Maybe, but that ridiculousness has kept Abby relatively healthy over the last year. When a common cold could kill your daughter (and almost did), you tend to be kind of cautious. I hope none of you are ever faced with that constant threat. It is always on my mind.
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