Mom is doing somewhat better on her new pain regimen (the one I suggested, might I add). We are alternating Ibuprofen in between her pain pill doses, and it seems to be keeping her held over for the most part. Her biggest issue right now are the bed sores that they can't get to heal. The medicines are not working, they are getting worse, and are causing her a lot of pain. As of now, there are no infections in them, but that is what is coming if they can't get them under control.
Aspynne is great. She is still plugging along on the anti-seizure medications without effect, and is quite the chatty, happy little toddler. Her teeth seem to be bothering her the past few days, but that is to be expected at her age cutting all 4 molars at once. :)
Addyson is adjusting to school well....can you believe that next week is the end of the first 6 weeks? She got her very first "red light" yesterday for talking and not listening on multiple occasions, and then lied to us when we asked her if she got a green light yesterday. :( Please pray for her that we don't get on her too much for that. :)
As for us....life is busy. We are in meetings all week at the Corporate Office, and aren't home until late in the evenings, so this week is a whirlwind. I miss my babies and working from home, but all will be back in order next week.
Please continue to keep us in your thoughts as we embark on some personal decisions in our life about our careers, our family and our future. We are actively seeking direction from Him, and can use all the help we can get. With all this going on, I've often thought over the past few weeks "Why is life so hard? Why can't I go back to being 5 or 6 years old where my biggest concern was what kind of ice cream I'd like after school today!"
Thursday, September 30, 2010
Sunday, September 26, 2010
The most beautiful thing
Sorry again for the time that has elapsed since my last blog post... You guys should really ride me more often to keep this thing updated. :)
The family went to see Mom yesterday, and she is doing surprisingly better. She is alert, talkative and eating quite well. She seems overall in good spirits despite the constant pain that she is in, which is now our biggest problem. They have already tried a couple different pain medication regimens to no avail, so I asked my mom and dad to try something for me. I am by no means a doctor, but I thought I'd throw my 2 cents in, anyway.... Today, I called, and much to my surprise, they not only tried my suggestion, but it's working! Mom's pain was significantly better today than it has been, and she even slept fairly well last night! I am so glad. I am about to call and check on her again soon just to make sure that she is still doing well. I am so glad that I was able to suggest something that actually helped! (Thank you, God for that insight!)
As for Aspynne, things couldn't be better. We are 35 days seizure-free, and medicated successfully with absolutely NO side effects. God is so good. He has absolutely answered all of our prayers! Don't get me wrong, she's teething, she's tired, a little cranky, and getting quite defiant, might I add....but we welcome all of those things with open arms, as they are EXACTLY what an almost 19-month-old should be doing!
Addyson is doing great in school. She has had 2 straight weeks with :) days, and is just loving it. She has had no trouble adjusting to going to school or the new schedule (though she did sleep until 8 am yesterday morning which was nice). Tonight, after dinner, we came home and got ready for bed, read a book, and got ready to give hugs and kisses when Addyson told Bob that she was going to pray for a great day tomorrow, and that he was welcome to stay and pray with her if he'd like. We, of course, stayed and listened as she thanked God for a wonderful day today. She thanked him for two weeks of great days, prayed for more great days to come, and then, thanked God for being so wonderful to her mommy and daddy. She ended with an "I love you. Amen." That innocent little prayer was absolutely the most beautiful thing I have ever heard. Bob and I both left the room a little teary eyed!
I, too, thank God for how wonderful he has been to us. He has blessed us with a beautiful family, awesome friends and an amazing church.
The family went to see Mom yesterday, and she is doing surprisingly better. She is alert, talkative and eating quite well. She seems overall in good spirits despite the constant pain that she is in, which is now our biggest problem. They have already tried a couple different pain medication regimens to no avail, so I asked my mom and dad to try something for me. I am by no means a doctor, but I thought I'd throw my 2 cents in, anyway.... Today, I called, and much to my surprise, they not only tried my suggestion, but it's working! Mom's pain was significantly better today than it has been, and she even slept fairly well last night! I am so glad. I am about to call and check on her again soon just to make sure that she is still doing well. I am so glad that I was able to suggest something that actually helped! (Thank you, God for that insight!)
As for Aspynne, things couldn't be better. We are 35 days seizure-free, and medicated successfully with absolutely NO side effects. God is so good. He has absolutely answered all of our prayers! Don't get me wrong, she's teething, she's tired, a little cranky, and getting quite defiant, might I add....but we welcome all of those things with open arms, as they are EXACTLY what an almost 19-month-old should be doing!
Addyson is doing great in school. She has had 2 straight weeks with :) days, and is just loving it. She has had no trouble adjusting to going to school or the new schedule (though she did sleep until 8 am yesterday morning which was nice). Tonight, after dinner, we came home and got ready for bed, read a book, and got ready to give hugs and kisses when Addyson told Bob that she was going to pray for a great day tomorrow, and that he was welcome to stay and pray with her if he'd like. We, of course, stayed and listened as she thanked God for a wonderful day today. She thanked him for two weeks of great days, prayed for more great days to come, and then, thanked God for being so wonderful to her mommy and daddy. She ended with an "I love you. Amen." That innocent little prayer was absolutely the most beautiful thing I have ever heard. Bob and I both left the room a little teary eyed!
I, too, thank God for how wonderful he has been to us. He has blessed us with a beautiful family, awesome friends and an amazing church.
Sunday, September 19, 2010
So Proud!
Addyson competed in her 3rd meet of the season today. We've been working really hard on perfecting some skills, and working through some challenges she had in the past 2 meets. Let me just say.......WAY TO GO, ADDYSON!
I could just give you the scores, but I think it's important to let you know where we've come from....
Addyson started the day on bars. She just got her mill circle for the first time at practice on Thursday, but she didn't quite land it today (didn't really expect her to). We've been working on the other elements, though....and today, she scored an 8.150 on bars! (That's up from a low 7 in previous meets, which is FANTASTIC!)
From bars we moved on to the beam, which has been Addyson's nemesis at the last 2 meets. At both meets, she fell off the beam not just once, but twice, sending her score plummeting into the mid 6's. We have really been working on those skills and "sticking it," fighting to stay on the beam, and let me tell you... she did JUST that. She didn't fall off at all today...rocketing her beam score to an 8.7! I was hoping for a high 7...an 8, much less an 8.7 was much more than I ever could have hoped! She was so proud!
Next, was the floor routine. Addyson has all of the necessary skills on floor, we've just been dealing with some tightness and sloppiness issues. We've been practicing it over and over...and today, it REALLY REALLY paid off. Addyson scored a 9.2 on floor! That's up from a 7.8 at the last meet. Not only that, but it was the second highest score of the 15 girls on her team!
Addyson finished the night on vault, which she always performs well on. Tonight's score was down just slightly from last week, but the judges seemed to be a little tougher on vault tonight across the board. She got an 8.7 on her vault score.
That put her AA (all around) score at 34.75. That is up from her 2 previous outings at 32.1, which is a gain of 2.65! If you know anything at all about gymnastics, you know that over 2 1/2 points is MAJOR.
I am soooooooooooooooooooooooooooooooooooooooooooooo proud of my baby girl. She was amazing tonight! She showed such maturity and dedication. Did I mention that she's the youngest on the team? By a full year? :)
As for the other things in my life (which have all been overshadowed tonight by Addyson's amazing performance), all is well for now. Aspynne is doing and feeling well. Still plugging along on her meds like a champ. Today was 29 days since her last seizure, which is the longest between seizures since we had the first one! I truly believe that she has been healed, and that she doesn't even need the medicine. I don't plan on stopping it, nonetheless, but I believe that season in our lives is over.
Mom is doing o.k....she was rather weak today, and is again having some stomach troubles, but all in all is awake, alert and eating fairly well. I hate that we didn't get to go see her this weekend, but it was a very busy weekend with a lot of much needed FUN!
I could just give you the scores, but I think it's important to let you know where we've come from....
Addyson started the day on bars. She just got her mill circle for the first time at practice on Thursday, but she didn't quite land it today (didn't really expect her to). We've been working on the other elements, though....and today, she scored an 8.150 on bars! (That's up from a low 7 in previous meets, which is FANTASTIC!)
From bars we moved on to the beam, which has been Addyson's nemesis at the last 2 meets. At both meets, she fell off the beam not just once, but twice, sending her score plummeting into the mid 6's. We have really been working on those skills and "sticking it," fighting to stay on the beam, and let me tell you... she did JUST that. She didn't fall off at all today...rocketing her beam score to an 8.7! I was hoping for a high 7...an 8, much less an 8.7 was much more than I ever could have hoped! She was so proud!
Next, was the floor routine. Addyson has all of the necessary skills on floor, we've just been dealing with some tightness and sloppiness issues. We've been practicing it over and over...and today, it REALLY REALLY paid off. Addyson scored a 9.2 on floor! That's up from a 7.8 at the last meet. Not only that, but it was the second highest score of the 15 girls on her team!
Addyson finished the night on vault, which she always performs well on. Tonight's score was down just slightly from last week, but the judges seemed to be a little tougher on vault tonight across the board. She got an 8.7 on her vault score.
That put her AA (all around) score at 34.75. That is up from her 2 previous outings at 32.1, which is a gain of 2.65! If you know anything at all about gymnastics, you know that over 2 1/2 points is MAJOR.
I am soooooooooooooooooooooooooooooooooooooooooooooo proud of my baby girl. She was amazing tonight! She showed such maturity and dedication. Did I mention that she's the youngest on the team? By a full year? :)
As for the other things in my life (which have all been overshadowed tonight by Addyson's amazing performance), all is well for now. Aspynne is doing and feeling well. Still plugging along on her meds like a champ. Today was 29 days since her last seizure, which is the longest between seizures since we had the first one! I truly believe that she has been healed, and that she doesn't even need the medicine. I don't plan on stopping it, nonetheless, but I believe that season in our lives is over.
Mom is doing o.k....she was rather weak today, and is again having some stomach troubles, but all in all is awake, alert and eating fairly well. I hate that we didn't get to go see her this weekend, but it was a very busy weekend with a lot of much needed FUN!
Thursday, September 16, 2010
Why???
Sometimes I just don't understand.
Just when things are really looking up. Just when I think I can let down my guard and be happy for a moment.....just ONE moment.
Tonight, I struggle with anger. I am trying to forgive as Jesus did, but right now, I just don't have it in me. Everything inside of my just wants to blow up, but I have managed to refrain. Partially because I am so dissapointed, angry and sad that I just don't even know what to say.
It is so frustrating that something can so quickly and so dramatically change your mood. How fast a great moment can be shattered. Why does it have to happen this way? I can't help but feel like it's Satan chasing me down. While I didn't physically feel good today, I felt good today. Worken on my bible study. Read my bible. Felt confident and strong in my faith. Just a few hours later, I am struggling to figure out how to be still and act as a true Christian should. Why is it when you are challenged to the very core do you feel like running in the opposite direction?
I am in such inner turmoil that I'm afraid I may have trouble sleeping tonight. Yay. Just what I need to help me feel even worse tomorrow.
Just when things are really looking up. Just when I think I can let down my guard and be happy for a moment.....just ONE moment.
Tonight, I struggle with anger. I am trying to forgive as Jesus did, but right now, I just don't have it in me. Everything inside of my just wants to blow up, but I have managed to refrain. Partially because I am so dissapointed, angry and sad that I just don't even know what to say.
It is so frustrating that something can so quickly and so dramatically change your mood. How fast a great moment can be shattered. Why does it have to happen this way? I can't help but feel like it's Satan chasing me down. While I didn't physically feel good today, I felt good today. Worken on my bible study. Read my bible. Felt confident and strong in my faith. Just a few hours later, I am struggling to figure out how to be still and act as a true Christian should. Why is it when you are challenged to the very core do you feel like running in the opposite direction?
I am in such inner turmoil that I'm afraid I may have trouble sleeping tonight. Yay. Just what I need to help me feel even worse tomorrow.
Wednesday, September 15, 2010
Interruptions....
Seems that we've had a lot going on lately. So much so that I've neglected my blog for a couple days.
Mom is at home, and doing fairly well... she's awake, alert and communicating, and says she's not in pain. The only problem now is that she's not eating. She hasn't really eaten much of anything in around 12 days....just a little applesauce and pudding here and there. While that's a really good diet if you're 6 months old and supplementing with formula, I'm not sure it's going to give my 60 year old mom and her failing body the energy it needs to keep fighting. Her body has gotten so weak over the past month that she can't move a single part of her body except her head. She is, by all intensive purposes, frozen in place and completely dependent on someone else to move her, feed her, clean her, wipe her nose, itch her arm, you name it. I can't imagine that is fun.
I believe if I were in her place, I would remind myself of this passage every day:
Yet I am always with you; you hold me by my right hand. You guide me with your counsel, and afterward you will take me into glory. Whom have I in heaven but you? And earth has nothing I desire besides you. My flesh and my heart may fail, but God is the strength of my heart and my portion forever. Psalms 73:23-26
Aspynne is still doing well on her anti-seizure medication. At the 9 days on full dosage mark, we still seem to be experiencing no side effects and she hasn't had another seizure. God is good. We are fighting another cold, and cutting all 4 molars (yay), but that is to be expected of an 18-month old. We saw the pediatrician yesterday about her "viral rash" that just won't go away, and she is sending us to have it checked out by a Pediatric Dermatologist. Aspynne now has a Pediatrician, a Pediatric Opthamologist, a Pediatric Neurologist and a Pediatric Dermatologist....
Does anyone else think thats a few too many doctors for an 18-month old? Geez.
Before I end, I would like to share something from this week's Bible Study. We are learning about Jonah, and his "interrupted" life. It is so easy to look at life's "interruptions" in a negative way (which I am so guilty of), instead of looking at them as Divine Interventions into our lives. It's easy to be so irritated by the interruption that you miss the good that comes out of it. How lucky are we that God even cares enough about our life to interrupt it? He uses interruptions to put us on a different path, change our course, and use us to glorify Him. I am going to work hard at changing my thought process when an interruption happens in my life. I am going to embrace it, welcome the challenge, and follow God onto whatever path or season he has in store for me.
I find myself thinking of following Him and the words of this song flow through my head:
Follow You
You live among the least of these
The weary and the weak
And it would be a tragedy for me to turn away
All my needs you have supplied
When I was dead You gave me life
How could I not give it away so freely?
And I’ll follow You into the homes of the broken
Follow You into the world
Meet the needs for the poor and the needy, God
Follow You into the world
Use my hands use my feet
To make Your kingdom come
To the corners of the earth
Until Your work is done
‘Cause faith without works is dead
And on the cross
Your blood was shed
So how could we not give it away so freely?
I give all myself
I give all myself
I give all myself to You
And I’ll follow You into the homes of the broken
Follow You into the world
Meet the needs for the poor and the needy, God
Follow You into the world
Mom is at home, and doing fairly well... she's awake, alert and communicating, and says she's not in pain. The only problem now is that she's not eating. She hasn't really eaten much of anything in around 12 days....just a little applesauce and pudding here and there. While that's a really good diet if you're 6 months old and supplementing with formula, I'm not sure it's going to give my 60 year old mom and her failing body the energy it needs to keep fighting. Her body has gotten so weak over the past month that she can't move a single part of her body except her head. She is, by all intensive purposes, frozen in place and completely dependent on someone else to move her, feed her, clean her, wipe her nose, itch her arm, you name it. I can't imagine that is fun.
I believe if I were in her place, I would remind myself of this passage every day:
Yet I am always with you; you hold me by my right hand. You guide me with your counsel, and afterward you will take me into glory. Whom have I in heaven but you? And earth has nothing I desire besides you. My flesh and my heart may fail, but God is the strength of my heart and my portion forever. Psalms 73:23-26
Aspynne is still doing well on her anti-seizure medication. At the 9 days on full dosage mark, we still seem to be experiencing no side effects and she hasn't had another seizure. God is good. We are fighting another cold, and cutting all 4 molars (yay), but that is to be expected of an 18-month old. We saw the pediatrician yesterday about her "viral rash" that just won't go away, and she is sending us to have it checked out by a Pediatric Dermatologist. Aspynne now has a Pediatrician, a Pediatric Opthamologist, a Pediatric Neurologist and a Pediatric Dermatologist....
Does anyone else think thats a few too many doctors for an 18-month old? Geez.
Before I end, I would like to share something from this week's Bible Study. We are learning about Jonah, and his "interrupted" life. It is so easy to look at life's "interruptions" in a negative way (which I am so guilty of), instead of looking at them as Divine Interventions into our lives. It's easy to be so irritated by the interruption that you miss the good that comes out of it. How lucky are we that God even cares enough about our life to interrupt it? He uses interruptions to put us on a different path, change our course, and use us to glorify Him. I am going to work hard at changing my thought process when an interruption happens in my life. I am going to embrace it, welcome the challenge, and follow God onto whatever path or season he has in store for me.
I find myself thinking of following Him and the words of this song flow through my head:
Follow You
You live among the least of these
The weary and the weak
And it would be a tragedy for me to turn away
All my needs you have supplied
When I was dead You gave me life
How could I not give it away so freely?
And I’ll follow You into the homes of the broken
Follow You into the world
Meet the needs for the poor and the needy, God
Follow You into the world
Use my hands use my feet
To make Your kingdom come
To the corners of the earth
Until Your work is done
‘Cause faith without works is dead
And on the cross
Your blood was shed
So how could we not give it away so freely?
I give all myself
I give all myself
I give all myself to You
And I’ll follow You into the homes of the broken
Follow You into the world
Meet the needs for the poor and the needy, God
Follow You into the world
Friday, September 10, 2010
Mom is home!
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!
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!
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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