Get into the groove
Hi Friends,
I'm going to jump right in, because it's late and I'm tired...I arrived today to find mom already in the dining room with Michelle, her speech therapist, and a tray full of food in front of her...yogurt, apple sauce, scrambled eggs, breakfast potatoes, sausage, a blueberry muffin, and of course thickened orange juice, her favorite. She was NOT a fan of the solid foods...she would get some in her mouth, make a face as though it were the most horrible-tasting thing in the world, and spit it right back out again. She thought the yogurt was okay, but that's about the only thing she'd eat, besides the orange juice which she had four containers of. She of course was being very social and offering us her food to share, but when it came down to her eating it, she didn't do so well. Michelle and the other speech therapist think it is a behavioral thing, and that she just maybe needs to get used to eating again...they don't think it's a physical "oral sensitivity," or else she wouldn't be drinking the juice. Very perplexing and unexpected for me... figured she'd be ravenous and so glad to be able to eat, especially since she was trying to eat things that weren't even food a couple days ago. But I also found out they did not hold her tube feeding at 6am (breakfast was at 9am), so she may not have been hungry either...they plan to try again tomorrow morning, and this time they plan not to give her the 6am tube feed. They're also going to do lunch with her, so we'll try twice tomorrow and see how it goes.
Then after speech she had PT, and she walked around the unit for 15 minutes straight without stopping, and I did not follow behind her with the wheelchair this time. She did great, though she did still need lots of encouraging. Part of it I think is the fact that she's walking just to walk, and there is no destination or seeming point...something she never liked doing even Before. She only liked to walk if she was walking to go somewhere, and of course she hated most all forms of exercising just for the sake of exercising (so do I...like mother, like daughter). So it's no wonder she's not really enjoying it...Lilly and Aunt Linda arrived to spend a small chunk of time before they had to leave for the airport to catch Linda's flight. We played "catch" with the ball again, all three of us, and she did enjoy that a little better because it was actually a game and kind of fun. Then, after Lilly and Linda had to leave, she practiced stepping over something on the floor, and stepping sideways and walking on a straight line (kind of like a sobriety test)...she stuck it out, and did great.
Then of course she was exhausted, but she had to stay up because the van to take us to her appointment was coming shortly after her PT ended. She was falling asleep in the wheelchair, and then when we left, she was still in and out...she seemed confused and a little irritated while we were riding in the van (I think she was getting hot, too), and when we arrived, we had to wait in the tiny waiting room for about 15-20 minutes to even go into a room...she slept most of the time during that. Then we went in the room, and it was so tiny we just had her sit in a regular chair because the wheelchair barely fit...she was initially wanting to put her head down and was irritated, but then I started talking to her and calmed her down a little bit. There were a few magazines in the room, and we looked at those a bit...we waited and waited in the damn room for the doctor to come in, and we were both getting impatient. I was trying to think of something else to pass the time and calm her down, so I started singing "You Are My Sunshine," a song we always sang together when I was little. She LOVED it, and started singing along with me...we sang it a few times and she liked it so much I tried to think of other songs we could sing, and ended up only being able to think of Christmas carols. So, first we sang her favorite, "Silent Night," and she sang along with me...she didn't remember all the words, but certainly the melody. We used to sing carols together and I would sing the melody and she would harmonize with me...at first, she was just singing the melody along with me, but then as we moved onto the next song, she totally started singing harmony to my melody, and we had SO much fun...she absolutely LOVED it. We made it through every Christmas carol I could think of, and she remembered the tunes of every single one. But we were both still getting impatient waiting, and about the third time I popped my head out of the room, I saw someone and asked if we'd be waiting much longer...the doctor came in a few minutes later. The appointment was at 1pm, and she didn't get seen until at least 2pm...and then, after all that, the doctor was in the room for a total of about 5 minutes...he had mom take off her helmet so he could look at how well her incision was healing (it's fine...all healed), told me he'd be okay with doing the cranioplasty surgery (to put the skull bone back on) any time now, I told him I'd be more comfortable if we waited awhile longer to be sure everything was okay, he agreed that would be fine, and that's it. It was very frustrating for me because this outing was a HUGE stressor for mom, and it seemed all for naught, because this is something that could have been done over the phone. And to top it all off, we waited for another hour for the van to come pick us up again. Mom was SO patient for the most part...much better than I thought she'd be, but she was SO exhausted by the time we got back, we put her straight to bed. Poor thing.
Jillian and Pam got there right as we were putting mom to bed, so we left and went to Walgreen's and then to an early dinner...we sat and talked and it was good to hang out with them, but our conversation turned to this huge decision I have to make, and that kind of put a damper on things...I was feeling REALLY down and awful as we left, and didn't talk much as we walked back to see mom. When we got there, she was awake, and we sat down to hang out for a bit...we chatted, and then somehow got the idea to get out the iPod and listen to some tunes...we had the BEST time, all three of us. She LOVED the new songs I had put on there...they were ones she had liked Before, and she still does...we had thought her musical tastes may have changed, but she was thoroughly enjoying pretty much everything I played...all upbeat, rockin' songs, and she was dancin' in the bed, and we were all singing along, and she was LOVING it...she was also being HILARIOUS, the faces she was making and the grooving she was doing, and we laughed SO much, all of us...exactly what I needed to cheer me up a bit, and only something she could have done would have cheered me up tonight. She even sang along a little bit to the songs she really knew well, like "Mrs. Robinson," by Simon and Garfunkel. I was so distracted by how much fun we were having that I completely forgot to put her laundry in to wash, and by the time I remembered, it was too late in the evening...I was kicking myself, and she told me not to worry about it, that it was fine and she'd be just fine if I did it tomorrow. She wouldn't rest until she was sure I wasn't worried about it anymore, which I assured her I was but secretly I'm still mad I forgot. I'm getting as absent-minded as she is.
After our musical session, she told us she apologized but that she should probably really get some sleep. I'm so glad that she can not only recognize her fatigue, but also verbalize it and do something about it (in this case, "kick us out")...before, she would just start becoming agitated and not understand why. So, we tucked her in, said our goodnights and left. Jillian had to drive home to the 'burbs, but Pam and I went to see a movie ("We Own the Night"...good, but at times overly dramatic), and now I am home and going to bed. Tomorrow, mom has breakfast at 9am and lunch at 1pm, so keep your fingers crossed she eats better. She also has her other therapies in addition, so she'll have another long, busy day. Keep sending your love and support, we need them still.
I'm going to jump right in, because it's late and I'm tired...I arrived today to find mom already in the dining room with Michelle, her speech therapist, and a tray full of food in front of her...yogurt, apple sauce, scrambled eggs, breakfast potatoes, sausage, a blueberry muffin, and of course thickened orange juice, her favorite. She was NOT a fan of the solid foods...she would get some in her mouth, make a face as though it were the most horrible-tasting thing in the world, and spit it right back out again. She thought the yogurt was okay, but that's about the only thing she'd eat, besides the orange juice which she had four containers of. She of course was being very social and offering us her food to share, but when it came down to her eating it, she didn't do so well. Michelle and the other speech therapist think it is a behavioral thing, and that she just maybe needs to get used to eating again...they don't think it's a physical "oral sensitivity," or else she wouldn't be drinking the juice. Very perplexing and unexpected for me... figured she'd be ravenous and so glad to be able to eat, especially since she was trying to eat things that weren't even food a couple days ago. But I also found out they did not hold her tube feeding at 6am (breakfast was at 9am), so she may not have been hungry either...they plan to try again tomorrow morning, and this time they plan not to give her the 6am tube feed. They're also going to do lunch with her, so we'll try twice tomorrow and see how it goes.
Then after speech she had PT, and she walked around the unit for 15 minutes straight without stopping, and I did not follow behind her with the wheelchair this time. She did great, though she did still need lots of encouraging. Part of it I think is the fact that she's walking just to walk, and there is no destination or seeming point...something she never liked doing even Before. She only liked to walk if she was walking to go somewhere, and of course she hated most all forms of exercising just for the sake of exercising (so do I...like mother, like daughter). So it's no wonder she's not really enjoying it...Lilly and Aunt Linda arrived to spend a small chunk of time before they had to leave for the airport to catch Linda's flight. We played "catch" with the ball again, all three of us, and she did enjoy that a little better because it was actually a game and kind of fun. Then, after Lilly and Linda had to leave, she practiced stepping over something on the floor, and stepping sideways and walking on a straight line (kind of like a sobriety test)...she stuck it out, and did great.
Then of course she was exhausted, but she had to stay up because the van to take us to her appointment was coming shortly after her PT ended. She was falling asleep in the wheelchair, and then when we left, she was still in and out...she seemed confused and a little irritated while we were riding in the van (I think she was getting hot, too), and when we arrived, we had to wait in the tiny waiting room for about 15-20 minutes to even go into a room...she slept most of the time during that. Then we went in the room, and it was so tiny we just had her sit in a regular chair because the wheelchair barely fit...she was initially wanting to put her head down and was irritated, but then I started talking to her and calmed her down a little bit. There were a few magazines in the room, and we looked at those a bit...we waited and waited in the damn room for the doctor to come in, and we were both getting impatient. I was trying to think of something else to pass the time and calm her down, so I started singing "You Are My Sunshine," a song we always sang together when I was little. She LOVED it, and started singing along with me...we sang it a few times and she liked it so much I tried to think of other songs we could sing, and ended up only being able to think of Christmas carols. So, first we sang her favorite, "Silent Night," and she sang along with me...she didn't remember all the words, but certainly the melody. We used to sing carols together and I would sing the melody and she would harmonize with me...at first, she was just singing the melody along with me, but then as we moved onto the next song, she totally started singing harmony to my melody, and we had SO much fun...she absolutely LOVED it. We made it through every Christmas carol I could think of, and she remembered the tunes of every single one. But we were both still getting impatient waiting, and about the third time I popped my head out of the room, I saw someone and asked if we'd be waiting much longer...the doctor came in a few minutes later. The appointment was at 1pm, and she didn't get seen until at least 2pm...and then, after all that, the doctor was in the room for a total of about 5 minutes...he had mom take off her helmet so he could look at how well her incision was healing (it's fine...all healed), told me he'd be okay with doing the cranioplasty surgery (to put the skull bone back on) any time now, I told him I'd be more comfortable if we waited awhile longer to be sure everything was okay, he agreed that would be fine, and that's it. It was very frustrating for me because this outing was a HUGE stressor for mom, and it seemed all for naught, because this is something that could have been done over the phone. And to top it all off, we waited for another hour for the van to come pick us up again. Mom was SO patient for the most part...much better than I thought she'd be, but she was SO exhausted by the time we got back, we put her straight to bed. Poor thing.
Jillian and Pam got there right as we were putting mom to bed, so we left and went to Walgreen's and then to an early dinner...we sat and talked and it was good to hang out with them, but our conversation turned to this huge decision I have to make, and that kind of put a damper on things...I was feeling REALLY down and awful as we left, and didn't talk much as we walked back to see mom. When we got there, she was awake, and we sat down to hang out for a bit...we chatted, and then somehow got the idea to get out the iPod and listen to some tunes...we had the BEST time, all three of us. She LOVED the new songs I had put on there...they were ones she had liked Before, and she still does...we had thought her musical tastes may have changed, but she was thoroughly enjoying pretty much everything I played...all upbeat, rockin' songs, and she was dancin' in the bed, and we were all singing along, and she was LOVING it...she was also being HILARIOUS, the faces she was making and the grooving she was doing, and we laughed SO much, all of us...exactly what I needed to cheer me up a bit, and only something she could have done would have cheered me up tonight. She even sang along a little bit to the songs she really knew well, like "Mrs. Robinson," by Simon and Garfunkel. I was so distracted by how much fun we were having that I completely forgot to put her laundry in to wash, and by the time I remembered, it was too late in the evening...I was kicking myself, and she told me not to worry about it, that it was fine and she'd be just fine if I did it tomorrow. She wouldn't rest until she was sure I wasn't worried about it anymore, which I assured her I was but secretly I'm still mad I forgot. I'm getting as absent-minded as she is.
After our musical session, she told us she apologized but that she should probably really get some sleep. I'm so glad that she can not only recognize her fatigue, but also verbalize it and do something about it (in this case, "kick us out")...before, she would just start becoming agitated and not understand why. So, we tucked her in, said our goodnights and left. Jillian had to drive home to the 'burbs, but Pam and I went to see a movie ("We Own the Night"...good, but at times overly dramatic), and now I am home and going to bed. Tomorrow, mom has breakfast at 9am and lunch at 1pm, so keep your fingers crossed she eats better. She also has her other therapies in addition, so she'll have another long, busy day. Keep sending your love and support, we need them still.
Comments
I had so much fun at our dance party yesterday! I am glad that it cheered you up too. I hope today is another good day and I will see you at work this afternoon:)
Love, Jillian
Love,
Amanda and Pete Steinke