Quick update for everyone:
Mom came home yesterday and is doing O.K. She's still extremely weak and is not eating much at all. She is very glad to be home, though.... I will be going to see her Sunday after church.
Addyson and I are in Weatherford tonight at a hotel getting ready for tomorrow morning's gymnastics meet! We have to be at the gym for warm ups at 7:45am. Yuck!
Aspynne is still doing great on her meds....a little sleepy, but great mood!
Thanks again for all of your continued support!
Friday, September 10, 2010
Wednesday, September 8, 2010
Yet another late night update....
We got the call this afternoon from Cook's about Aspynne's EEG. Everything was once again perfectly normal, with no signs of seizure activity! YAY! We will continue on the path we are on with the anti-seizure meds, but there are no signs for any other needed action at this time. It's been almost 3 weeks since the last seizure, and she is still doing great on her meds. They don't seem to be effecting her at all other than maybe being a little more tired.
As for Mom, she will be going home tomorrow morning. While she IS doing a little better than she was 2 or 3 days ago, she is still not doing well. She is starting to have some circulation issues where blood flow is not doing well on one side of her body. This is probably a combination of the MS progressing and being confined to a hospital bed in one position without ever getting upright. She is still not eating well, but seems to be drinking a bit more, and is definitely more alert and conversing with us (though it's very hard to hear or understand because of how weak her voice is). I still don't think that she has much time left with us here on this Earth. We will see how she does once she gets back in the comfort of her own home, but it really seems that her body is just no longer willing to cooperate. Please keep my Mom and especially my Dad in your prayers as tomorrow will be a major transition for them. I know that my Dad is worried about not being able to take care of her well enough by himself at home, but he knows that it is what she wants, so he will do his best (which is always more than I could ever ask of him).
I have a sore throat and don't really feel great myself, my back problems are coming back, so we're going to have to deal with that, and on top of ALL THIS....I have a couple other issues that are weighing on me. So...as always, I'm a big pile of need. Please keep me and my sanity (not that I had a lot to begin with) in your thoughts and prayers, as well.
As for Mom, she will be going home tomorrow morning. While she IS doing a little better than she was 2 or 3 days ago, she is still not doing well. She is starting to have some circulation issues where blood flow is not doing well on one side of her body. This is probably a combination of the MS progressing and being confined to a hospital bed in one position without ever getting upright. She is still not eating well, but seems to be drinking a bit more, and is definitely more alert and conversing with us (though it's very hard to hear or understand because of how weak her voice is). I still don't think that she has much time left with us here on this Earth. We will see how she does once she gets back in the comfort of her own home, but it really seems that her body is just no longer willing to cooperate. Please keep my Mom and especially my Dad in your prayers as tomorrow will be a major transition for them. I know that my Dad is worried about not being able to take care of her well enough by himself at home, but he knows that it is what she wants, so he will do his best (which is always more than I could ever ask of him).
I have a sore throat and don't really feel great myself, my back problems are coming back, so we're going to have to deal with that, and on top of ALL THIS....I have a couple other issues that are weighing on me. So...as always, I'm a big pile of need. Please keep me and my sanity (not that I had a lot to begin with) in your thoughts and prayers, as well.
Monday, September 6, 2010
Mental exhaustion...
I went to see mom this morning, and spent 2 hours sitting by her bedside. She was completely out, and was unable to respond to me, at all. It was horrible not being able to communicate with her, and watching her frequently wince in pain.
I went a saw a movie with Addyson, her friend and her friend's mom. It was nice just getting out with the girls and getting my mind off of everything for a couple of hours.
After the movie, I headed back up to see if mom was feeling any better. Apparently, part of what knocked her out was the anti-nausea meds they gave her (the new morphine made her nauseous). She was more alert this afternoon, and was able to talk to me off and on for about an hour. She ate a couple of bites of food for us, but she is not well. She hasn't had more than 5 bites of food and few sips of water since yesterday morning. Her body is getting weaker and weaker with each passing hour. Today, she can't even ring the bell to alert the nurses that she is in need of something.
I don't know how much longer we have with her. The doctor is planning to try to get her back home Wednesday or Thursday, depending on how she is doing, and we will go from there. I definitely think that she will be more comfortable at home, and right now, I think her comfort is about all we should be focusing on.
Aspynne had another great day....day 2 on full dosage, and no sign of any side effects. Tomorrow is back to the grind, which means it will be that much harder for me to juggle everything going on in my life. I need to find a way to go see my mom tomorrow...let's hope I can find a few spare minutes for her.
For now, I'm spent. This is all so mentally exhausting. I am so ready to be freed of all of this stress in my life.
I went a saw a movie with Addyson, her friend and her friend's mom. It was nice just getting out with the girls and getting my mind off of everything for a couple of hours.
After the movie, I headed back up to see if mom was feeling any better. Apparently, part of what knocked her out was the anti-nausea meds they gave her (the new morphine made her nauseous). She was more alert this afternoon, and was able to talk to me off and on for about an hour. She ate a couple of bites of food for us, but she is not well. She hasn't had more than 5 bites of food and few sips of water since yesterday morning. Her body is getting weaker and weaker with each passing hour. Today, she can't even ring the bell to alert the nurses that she is in need of something.
I don't know how much longer we have with her. The doctor is planning to try to get her back home Wednesday or Thursday, depending on how she is doing, and we will go from there. I definitely think that she will be more comfortable at home, and right now, I think her comfort is about all we should be focusing on.
Aspynne had another great day....day 2 on full dosage, and no sign of any side effects. Tomorrow is back to the grind, which means it will be that much harder for me to juggle everything going on in my life. I need to find a way to go see my mom tomorrow...let's hope I can find a few spare minutes for her.
For now, I'm spent. This is all so mentally exhausting. I am so ready to be freed of all of this stress in my life.
Sunday, September 5, 2010
Visiting Mom....
My dad joined us for service this morning at VCC! It was so great getting to introduce him to all the wonderful people we keep telling him about! By the awesomeness of His plan, my dad was able to visit on a day where communion was served, and the message was about not giving up. Coincidence? We think not. :)
Dad, Addyson and I went to visit Mom for a couple hours after church, and let me tell you, she looked really bad. Her hands have closed up so much that her nails are digging into her palms. Her feet have turned in, and her entire body is in pain. The doctor visited her this morning, and they decided to put in a permanent catheter, which she will keep, even when she returns home. She was also put on a twice a day 15mg morphine pill for pain. I have mixed emotions about both. While I know that the catheter is best for her and my dad, it means that she will be very tied to the bed, and I know that will wear her down quickly. The morphine will also begin to slow her down. It is a transition drug, and while we've been "expecting" this for a long time, and I say that I have had time to mentally "prepare," I am NOT ready.
To top it all off, we are not sure if my mom is saved...and I can't bear the thought of never seeing her again. At least if I knew she were saved, I know that this wouldn't be goodbye...but rather, see you later. I could rejoice in the fact that I knew she'd be with God and that I, and her granddaughters would be able to see her again one day. Though I think it might irritate her a little, I think I'm going to ask someone to go talk to her. As our pastor said this morning, we need to think less about what people would think of us, and more about what would glorify God, regardless of the persecution you have to endure for it.
I don't think it's going to be long. Today, I realized just how weak my mom is. She can barely even drink from a straw these days. I firmly believe that her mind is the only thing holding her on this Earth at this point, and when she let's go, I think it won't be a long journey to the end.
On a lighter note, Aspynne is doing great. She is still doing great on the medicine, and today started her full dosage. She is the same, wonderful Aspynne she has always been, and I am so grateful for that. God is good, and has truly answered our prayers.
Dad, Addyson and I went to visit Mom for a couple hours after church, and let me tell you, she looked really bad. Her hands have closed up so much that her nails are digging into her palms. Her feet have turned in, and her entire body is in pain. The doctor visited her this morning, and they decided to put in a permanent catheter, which she will keep, even when she returns home. She was also put on a twice a day 15mg morphine pill for pain. I have mixed emotions about both. While I know that the catheter is best for her and my dad, it means that she will be very tied to the bed, and I know that will wear her down quickly. The morphine will also begin to slow her down. It is a transition drug, and while we've been "expecting" this for a long time, and I say that I have had time to mentally "prepare," I am NOT ready.
To top it all off, we are not sure if my mom is saved...and I can't bear the thought of never seeing her again. At least if I knew she were saved, I know that this wouldn't be goodbye...but rather, see you later. I could rejoice in the fact that I knew she'd be with God and that I, and her granddaughters would be able to see her again one day. Though I think it might irritate her a little, I think I'm going to ask someone to go talk to her. As our pastor said this morning, we need to think less about what people would think of us, and more about what would glorify God, regardless of the persecution you have to endure for it.
I don't think it's going to be long. Today, I realized just how weak my mom is. She can barely even drink from a straw these days. I firmly believe that her mind is the only thing holding her on this Earth at this point, and when she let's go, I think it won't be a long journey to the end.
On a lighter note, Aspynne is doing great. She is still doing great on the medicine, and today started her full dosage. She is the same, wonderful Aspynne she has always been, and I am so grateful for that. God is good, and has truly answered our prayers.
Saturday, September 4, 2010
Stress, stress and more stress...
First, for an update on Aspynne for those of you who are keeping up with this blog just for that reason. Aspynne is doing great. She seems in great spirits, and so far, doesn't at all seem to be affected by the medicine. Tomorrow we start full doses (we have been doing 1/2 doses thus far), so we will see if the increased doses affect her any differently. On another note, the viral infection that she has had for well over a month seems to really be coming back now. It seemed to get better for a bit, but now is kicking in again full force. She has a stuffy nose, a cough, and her rash is back, but doesn't seem to be bothering her. I think I'll call the pediatrician if it's still around by Tuesday just to make sure it's okay that it's been around this long.
As for the title of today's blog, a trip to my parent's house this morning turned out to be just a little more stressful than planned. As many of you know, my mom has M.S. and has been gettting progressively worse over the past several months. They hired a daytime assistant for my dad to help take care of her. Last week, they brough hospice in to give them some more help. Yesterday morning, my dad spent 2 hours just trying to get my mom out of her chair, with no success. He had to wait another hour for his assistant to arrive just so they, together, could get her up. Last night, my dad had such a hard time getting her ready for bed that he decided he just couldn't handle it anymore. (Mind you, he's 73...) When we arrived at their house this morning, there was a hospice nurse there, and my dad informed me that they had decided to take her by ambulance to a facility where she could get taken care of. After I asked about a thousand questions.....it all came down to this: She was being taken to an assisted living facility where this hospice company has several rooms where they care for patients....some that are getting ready to transition and their family member decided a facility would be best, and some, like my mom, who just needs a few days of special care to help get her back on her feet.
After I helped pack a bag for her, they came and took her away. I had Bob take the girls back home, and I went with my dad to the facility to check it out and to make sure she got settled in okay. They said that generally patients aren't there more than about 5 days, but that they, for sure, would keep her through the Labor Day holiday. We have known for quite some time that there would soon come a day that my dad couldn't do it anymore, but it was quite hard seeing that day come to fruition.
I know that my mom's heart is breaking right now having to be in a facility. Though it probably is truly better for her, it's so hard to see someone that is 100% in their right mind, and their body just won't work.
It was also a little hard explaining to Addyson today that an ambulance would be coming to take MiMi away and that they were going to help her get better. There was a nagging part of me that wondered if she'd ever come back home (though I believe she will).
As an only child, and only 31 years old it is really hard to think about losing one of my parents. I have said for a few years now that I just wanted to get to the point where Addyson would remember her....and I think at 5 1/2, we are there.
There is one good thing that came out of my mom going into that facility today. My dad is going to accompany us to church tomorrow morning! My dad who is the most devout follwer of Christ I have ever known hasn't been able to attend service in quite some time because of caring for my mom. I am so excited that he is going to get to expericence Valley Creek with us! After church we will have lunch, and then my dad and I will go to see mom again and make sure that she's doing okay.
For now, I am once again fried. I know it says that God won't give you more than you can handle, but I hope he feels like I've got enough because I'm not sure how much more I can take at this point.
As for the title of today's blog, a trip to my parent's house this morning turned out to be just a little more stressful than planned. As many of you know, my mom has M.S. and has been gettting progressively worse over the past several months. They hired a daytime assistant for my dad to help take care of her. Last week, they brough hospice in to give them some more help. Yesterday morning, my dad spent 2 hours just trying to get my mom out of her chair, with no success. He had to wait another hour for his assistant to arrive just so they, together, could get her up. Last night, my dad had such a hard time getting her ready for bed that he decided he just couldn't handle it anymore. (Mind you, he's 73...) When we arrived at their house this morning, there was a hospice nurse there, and my dad informed me that they had decided to take her by ambulance to a facility where she could get taken care of. After I asked about a thousand questions.....it all came down to this: She was being taken to an assisted living facility where this hospice company has several rooms where they care for patients....some that are getting ready to transition and their family member decided a facility would be best, and some, like my mom, who just needs a few days of special care to help get her back on her feet.
After I helped pack a bag for her, they came and took her away. I had Bob take the girls back home, and I went with my dad to the facility to check it out and to make sure she got settled in okay. They said that generally patients aren't there more than about 5 days, but that they, for sure, would keep her through the Labor Day holiday. We have known for quite some time that there would soon come a day that my dad couldn't do it anymore, but it was quite hard seeing that day come to fruition.
I know that my mom's heart is breaking right now having to be in a facility. Though it probably is truly better for her, it's so hard to see someone that is 100% in their right mind, and their body just won't work.
It was also a little hard explaining to Addyson today that an ambulance would be coming to take MiMi away and that they were going to help her get better. There was a nagging part of me that wondered if she'd ever come back home (though I believe she will).
As an only child, and only 31 years old it is really hard to think about losing one of my parents. I have said for a few years now that I just wanted to get to the point where Addyson would remember her....and I think at 5 1/2, we are there.
There is one good thing that came out of my mom going into that facility today. My dad is going to accompany us to church tomorrow morning! My dad who is the most devout follwer of Christ I have ever known hasn't been able to attend service in quite some time because of caring for my mom. I am so excited that he is going to get to expericence Valley Creek with us! After church we will have lunch, and then my dad and I will go to see mom again and make sure that she's doing okay.
For now, I am once again fried. I know it says that God won't give you more than you can handle, but I hope he feels like I've got enough because I'm not sure how much more I can take at this point.
In the day when I cried out, You answered me,
and made me bold with strength in my soul.
--Psalm 138:3 NKJVThursday, September 2, 2010
Day 3.....with an EEG
Today began for the entire family at 6:45am. We woke Aspynne up the same time Addyson gets up to get ready for school. Aspynne wasn't too thrilled about being up so early, but was finally pursuaded by her high chair and the promise of some num nums. She ate great and played for a while, but by 8:30am, she was tired, cranky and ready for bed. Only problem is....she wasn't allowed to sleep. She had to have 8 hours of awake time prior to her EEG at 3pm. Yay.
Whitney took Aspynne to the mall where she "played like a champ," and strolled around the mall for a while. I met them for lunch at McD's, where she ate great, and again played very well for quite some time. We left for Cook's just before 1:30pm, and Aspynne was a wreck. She had been trying to fall asleep in the car on the way home from the mall...how in the world were we going to get to Ft. Worth with her awake? Well, I sat in the back with her, and fed her. The whole way there. :)
We arrived at Cook's around 2:30pm, got checked in, and waited for them to call us in for the EEG. Right at 3pm, they got us, and we headed to the procedure room (which was NOTHING like the last one we had, might I add. I guess there's something to be said for having things done in Plano....) Anyway, Aspynne was NOT cooperative this time when the tech wanted to measure and draw all over her head, clean the spots and then glue, yes glue, the nodes to her scalp. She screamed bloody murder the entire time, and seeing that there are 21 brain nodes plus one on each cheek and one on both sides of her chest, the entire time was nothing shy of FOREVER.
After all the nodes were attached, her head was wrapped up, and we were ready to begin. She had to lay on her back while they flashed a stobe light in her face. I guess it was irritating enough that she closed her eyes to try to avoid it. Closing her eyes made her realize how tired she was, and she started to wail again. Oh, joy. After the strobing was over, it was time to try to get her to sleep. They need part of the EEG to be done while she is asleep, which is why we had to sleep deprive her...to "ensure" that she would fall asleep. Being the fantastic mommy that I am, I laid down on the hospital bed, flipped her up on my chest, hugged her and her night night baby nice and tight, and she was out....in seconds. She slept quietly and peacefully for about 20 minutes, then the tech flipped on the lights and said it was time to wake her up (since some of the study also must be done awake). I'm sure you can imagine how happy she was to be awake.
10 minutes of awake time and we were done with the study. The tech unwrapped her head, soaked it, and then proceeded to pull the tape and glue-covered nodes out of her hair. Once again...we had an unhappy baby. I felt so badly putting her through this again, but she really was a trooper. She is so strong.
As for her medication, it's hard to say if it affected her at all today, because while she was cranky, mad and quite angry...she would have been that way due to the lack of sleep, medication or not. So...I don't think it's affecting her. At least not for now. She is precious.
Now, she sleeps peacefully upstairs in her bed, and Bob and I finally sit down to take a breather. It's been quite a day. We most likely because of the holiday weekend won't hear EEG results until Tuesday. I will, of course, let all of you know as soon as I find out.
Whitney took Aspynne to the mall where she "played like a champ," and strolled around the mall for a while. I met them for lunch at McD's, where she ate great, and again played very well for quite some time. We left for Cook's just before 1:30pm, and Aspynne was a wreck. She had been trying to fall asleep in the car on the way home from the mall...how in the world were we going to get to Ft. Worth with her awake? Well, I sat in the back with her, and fed her. The whole way there. :)
We arrived at Cook's around 2:30pm, got checked in, and waited for them to call us in for the EEG. Right at 3pm, they got us, and we headed to the procedure room (which was NOTHING like the last one we had, might I add. I guess there's something to be said for having things done in Plano....) Anyway, Aspynne was NOT cooperative this time when the tech wanted to measure and draw all over her head, clean the spots and then glue, yes glue, the nodes to her scalp. She screamed bloody murder the entire time, and seeing that there are 21 brain nodes plus one on each cheek and one on both sides of her chest, the entire time was nothing shy of FOREVER.
After all the nodes were attached, her head was wrapped up, and we were ready to begin. She had to lay on her back while they flashed a stobe light in her face. I guess it was irritating enough that she closed her eyes to try to avoid it. Closing her eyes made her realize how tired she was, and she started to wail again. Oh, joy. After the strobing was over, it was time to try to get her to sleep. They need part of the EEG to be done while she is asleep, which is why we had to sleep deprive her...to "ensure" that she would fall asleep. Being the fantastic mommy that I am, I laid down on the hospital bed, flipped her up on my chest, hugged her and her night night baby nice and tight, and she was out....in seconds. She slept quietly and peacefully for about 20 minutes, then the tech flipped on the lights and said it was time to wake her up (since some of the study also must be done awake). I'm sure you can imagine how happy she was to be awake.
10 minutes of awake time and we were done with the study. The tech unwrapped her head, soaked it, and then proceeded to pull the tape and glue-covered nodes out of her hair. Once again...we had an unhappy baby. I felt so badly putting her through this again, but she really was a trooper. She is so strong.
As for her medication, it's hard to say if it affected her at all today, because while she was cranky, mad and quite angry...she would have been that way due to the lack of sleep, medication or not. So...I don't think it's affecting her. At least not for now. She is precious.
Now, she sleeps peacefully upstairs in her bed, and Bob and I finally sit down to take a breather. It's been quite a day. We most likely because of the holiday weekend won't hear EEG results until Tuesday. I will, of course, let all of you know as soon as I find out.
Wednesday, September 1, 2010
Oxcarbazepine Day 2
Not too much to report today. Pretty normal day around the Greenwood house....for whatever "normal" is these days. :)
Aspynne slept in until 11am this morning, got up, ate like a champ and was back down by 2pm. She seemed overly tired today, which we were told to expect this first week, especially. Other than being a little cranky (which I blame on being tired), she was great. In a good mood, played well, ate great, and went to bed without a fight.
On a completely different note, I think her little cold is back because she's got quite the cough and runny nose today. :( She and her sister seem to be playing sick tag. Yay.
Sleep deprived EEG tomorrow at 2pm at Cook's. Aspynne must be awake for 8 hours preceeding the procedure, which means she'll be getting up alongside her sister tomorrow morning at 6:45am. She won't be allowed to nap at all tomorrow...and then I have to get her to fall asleep during the EEG so that they can get "sleeping" brain waves. The first EEG went flawlessly, so I am praying for a repeat performance. Aspynne is a champ, and I know she'll do great.
I'll update you all tomorrow after the EEG.
Aspynne slept in until 11am this morning, got up, ate like a champ and was back down by 2pm. She seemed overly tired today, which we were told to expect this first week, especially. Other than being a little cranky (which I blame on being tired), she was great. In a good mood, played well, ate great, and went to bed without a fight.
On a completely different note, I think her little cold is back because she's got quite the cough and runny nose today. :( She and her sister seem to be playing sick tag. Yay.
Sleep deprived EEG tomorrow at 2pm at Cook's. Aspynne must be awake for 8 hours preceeding the procedure, which means she'll be getting up alongside her sister tomorrow morning at 6:45am. She won't be allowed to nap at all tomorrow...and then I have to get her to fall asleep during the EEG so that they can get "sleeping" brain waves. The first EEG went flawlessly, so I am praying for a repeat performance. Aspynne is a champ, and I know she'll do great.
I'll update you all tomorrow after the EEG.
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