Saturday, January 29, 2011
Well THAT was Awful!
Started the new medication tonight with Mary and let me tell you it was 20 minutes of torture for her! Saphris is a sublingual medicine that you have to put under your tongue and let it dissolve. You can't eat or drink anything for 10 minutes after you take it. Evidently the 2 flavors it comes in is black cherry and olive? We chose the black cherry thank you very much. Unfortunately the black cherry was not very good flavor either. Mary said it tasted horrible! Within a minute she was screaming in pain because her tongue hurt. She was also complaining of a massive headache within a couple of minutes of taking the medicine. She hated me, hated the doctor, etc. We waited out the ten minutes with her anger and pain escalating the entire time. When she could finally have some water, she couldn't swallow it because the pain in her mouth was that bad and she felt like her tongue was swelling. Then she started to feel very nauseous and started drooling uncontrollably. I helped her into the bathroom where she did throw up and was complaining that she was having trouble breathing. I couldn't tell if her lips were swelling or if they just looked like it because she was crying so hard. For a few minutes I thought we were going to get to go for another ride in the back of an ambulance. By that time the medicine had hit her blood stream and she was so sleepy that her eyes were rolling back in her head and she could hardly make it up the stairs. She is sleeping peacefully for now on my bedroom floor where I will keep a close eye on her all night. I am rethinking the wisdom of starting a medication on a weekend where I have to call the emergency number to reach the pdoc? Not sure if I should try that again tomorrow night or not? I would hate for the second dose to cause a more severe reaction than the first dose, which I know can sometimes be the case. I will keep you posted...
Tuesday, January 25, 2011
Major Medication Change in the Works
It has been a rough start to this week. I am feeling a little dazed and extremely tired tonight, so this post might be just a jumbled up mixture of information. I worked an 11 hour day yesterday. I am so thankful for the job and I have enjoyed working there so far. But I am definitely glad that I won't have to keep up this pace for more than a couple of weeks.
Yesterday started with a bang after I got to the office and read a post on fb from my sister that she was at the ER with my dad. My first thought was "REALLY, LORD?!?!?" Evidently He thinks that we still haven't reached the "more than you can bear" point in our lives. Thankfully all was well and it seems that it was just severe vertigo. But it was a tough few hours awaiting the final outcome of all the tests.
Mary continues to cycle rapidly going from giddy to angry to despondent in a matter of minutes. We have also noticed that lately she has been doing some strange things like lots of rocking or swaying back and forth. Usually it is short jerky movements, but sometimes it is dramatic swaying with her arms swinging wide and her eyes shut. She will stop when we ask her to, but it is happening more frequently.
We had a good visit with the pdoc this morning. We mentioned the movements and the pdoc was concerned about it. It could be a sign that Mary is moving into a catatonic state (which could involve psychosis), or it could just be something sensory. Once again we are on the hunt for a good medication to stabilize this precious child. The combination of invega and risperdal with lithium seems to be doing a pretty good job of controlling the rages. But she gained another 8 pounds in 2 months time. She can't continue to gain weight at this rate. There is concern with her developing diabetes and she is also starting to have some trouble with her feet hurting. The pdoc seems to think that might be caused or exacerbated by the weight gain. The options of medications to counteract the weight gain are not all that promising. One is a diabetes prevention medication that helps with weight gain in children. There are risks involved with it and it would require regular bloodwork. Mark that one off the list at least for now. The other one is topomax and the nick name for this is "dopomax" because it can cause such severe cognitive dulling. We already see that with the lithium. We certainly don't want to add to that unless it becomes a necessity. Sooooo we are going to try a new medication called Safris. It is in the same family as some of the other a-typical antipsychotics we have tried with disastrous results. Ultimately if it does not work we could be looking at another hospital stay, which is a high risk to take. But if it has the chance of helping her, we have to try it. We will be tapering off of the other meds and onto this one over the next 3 weeks.
The other major thing that happened today was a dentist visit. Since she is cycling, she is also much more anxious and was very on edge about it all day. She was afraid that there was going to be a shot involved. No matter how many times I told her it was just a cleaning she was worried. The pdoc said that if they did find any cavities to talk with them about conscious sedation and ask that while they had her under could they do a blood draw. I know that they have told us in the past that they would do conscious sedation on her just for the purpose of doing the blood draw, but our insurance won't cover that because it isn't a dental procedure. Of course she doesn't have any real cavities, just a small filling that could be replaced because it is loosening up a bit. They did not seem willing to put her under sedation to replace a filling. Mary was not happy about the prospect of having any dental work done without being sedated and she was on the verge of melting down right then and there since they were insisting that they could do it without novacaine and without sedation. UGGGHHH! I wasn't talking with the dentist about it, just the dental hygienist. I finally had to tell them I would call back to make an appointment after we had decided what to do.
Yesterday started with a bang after I got to the office and read a post on fb from my sister that she was at the ER with my dad. My first thought was "REALLY, LORD?!?!?" Evidently He thinks that we still haven't reached the "more than you can bear" point in our lives. Thankfully all was well and it seems that it was just severe vertigo. But it was a tough few hours awaiting the final outcome of all the tests.
Mary continues to cycle rapidly going from giddy to angry to despondent in a matter of minutes. We have also noticed that lately she has been doing some strange things like lots of rocking or swaying back and forth. Usually it is short jerky movements, but sometimes it is dramatic swaying with her arms swinging wide and her eyes shut. She will stop when we ask her to, but it is happening more frequently.
We had a good visit with the pdoc this morning. We mentioned the movements and the pdoc was concerned about it. It could be a sign that Mary is moving into a catatonic state (which could involve psychosis), or it could just be something sensory. Once again we are on the hunt for a good medication to stabilize this precious child. The combination of invega and risperdal with lithium seems to be doing a pretty good job of controlling the rages. But she gained another 8 pounds in 2 months time. She can't continue to gain weight at this rate. There is concern with her developing diabetes and she is also starting to have some trouble with her feet hurting. The pdoc seems to think that might be caused or exacerbated by the weight gain. The options of medications to counteract the weight gain are not all that promising. One is a diabetes prevention medication that helps with weight gain in children. There are risks involved with it and it would require regular bloodwork. Mark that one off the list at least for now. The other one is topomax and the nick name for this is "dopomax" because it can cause such severe cognitive dulling. We already see that with the lithium. We certainly don't want to add to that unless it becomes a necessity. Sooooo we are going to try a new medication called Safris. It is in the same family as some of the other a-typical antipsychotics we have tried with disastrous results. Ultimately if it does not work we could be looking at another hospital stay, which is a high risk to take. But if it has the chance of helping her, we have to try it. We will be tapering off of the other meds and onto this one over the next 3 weeks.
The other major thing that happened today was a dentist visit. Since she is cycling, she is also much more anxious and was very on edge about it all day. She was afraid that there was going to be a shot involved. No matter how many times I told her it was just a cleaning she was worried. The pdoc said that if they did find any cavities to talk with them about conscious sedation and ask that while they had her under could they do a blood draw. I know that they have told us in the past that they would do conscious sedation on her just for the purpose of doing the blood draw, but our insurance won't cover that because it isn't a dental procedure. Of course she doesn't have any real cavities, just a small filling that could be replaced because it is loosening up a bit. They did not seem willing to put her under sedation to replace a filling. Mary was not happy about the prospect of having any dental work done without being sedated and she was on the verge of melting down right then and there since they were insisting that they could do it without novacaine and without sedation. UGGGHHH! I wasn't talking with the dentist about it, just the dental hygienist. I finally had to tell them I would call back to make an appointment after we had decided what to do.
Sunday, January 23, 2011
UNCLE!
Did you ever play that game as a kid? You know the one I am talking about... Where you tickle each other until you can't take any more and then you yell "uncle". Or you take turns doing something that is mildly unpleasant until it becomes very unpleasant and you yell "uncle". That is the signal to STOP! That is where I am right now. Yelling "UNCLE" at the top of my lungs, but I don't think that God is playing by my rules.
It has been an overall tough week, and just when I thought I was at the breaking point, another hit rolls our way. Mary has been working towards a manic cycle over the past few days. She voluntarily took on doing not one ,but three yes, count them with me, three projects for school over this weekend. Now on the one hand we are very proud of her enthusiasm. On the other hand, that is a head's up signal to us. She has been great about working on them and has completed 2 of the 3 and has the third one half way done. She has been a happy manic, singing and laughing, dancing and grooving... But we know that all good things come to an end eventually and her manic phase came crashing to the ground on the way home from church. In a matter of 10 minutes she went from being VERY happy, to VERY angry, to the depths of despair. As the anger was taking over her brain and she was verbally lashing out at me, telling me what an awful mother I am and how much she hates me, all I could think was "UNCLE!"
Once Mary moved past the angry phase and saw the damage that her words caused she immediately became despondent, talking about how awful she is and that she can never show her face again because of how horribly she treats her mother. She spent some time sobbing in sorrow over her actions.
The plan for this afternoon was to finish the last project. Needless to say that has not happened and probably won't happen today. Thankfully it is not due until later in the week, so hopefully she will have time and energy to work on it between now and then. She is working her way back up to fully manic even as I write this. It should be a very interesting week around here.
Prayers appreciated... no actually, prayers desperately needed!
It has been an overall tough week, and just when I thought I was at the breaking point, another hit rolls our way. Mary has been working towards a manic cycle over the past few days. She voluntarily took on doing not one ,but three yes, count them with me, three projects for school over this weekend. Now on the one hand we are very proud of her enthusiasm. On the other hand, that is a head's up signal to us. She has been great about working on them and has completed 2 of the 3 and has the third one half way done. She has been a happy manic, singing and laughing, dancing and grooving... But we know that all good things come to an end eventually and her manic phase came crashing to the ground on the way home from church. In a matter of 10 minutes she went from being VERY happy, to VERY angry, to the depths of despair. As the anger was taking over her brain and she was verbally lashing out at me, telling me what an awful mother I am and how much she hates me, all I could think was "UNCLE!"
Once Mary moved past the angry phase and saw the damage that her words caused she immediately became despondent, talking about how awful she is and that she can never show her face again because of how horribly she treats her mother. She spent some time sobbing in sorrow over her actions.
The plan for this afternoon was to finish the last project. Needless to say that has not happened and probably won't happen today. Thankfully it is not due until later in the week, so hopefully she will have time and energy to work on it between now and then. She is working her way back up to fully manic even as I write this. It should be a very interesting week around here.
Prayers appreciated... no actually, prayers desperately needed!
Monday, January 17, 2011
Because we needed ONE more thing on our plate!
These past few weeks have been very busy. It seems like every time I think about sitting down to update everyone, I get distracted by something else, and, well, here we are with lots to say and not wanting to overwhelm everyone with the scope of our life. Many good things have happened and for those we are very thankful. We got a whole extra week off of school and some time to catch up on things that the busy-ness of the holidays prevented us from doing. We got to sleep in and play in the snow, drink hot chocolate (or coffee) and have some extra time with friends.
Along with these good things, we have had some pretty serious things as well. Just after Christmas, Grandpa Thompson (Mark's dad) was diagnosed with cancer in his stomach, throat and esophagus. It is inoperable. We are all very saddened by this news. Thankfully Mark was able to make the trip to VA to be with his parents the day that they received the final word from the doctors. We have been going back and forth about when we should take the whole family up there to visit. We desperately want our children to be able to "say goodbye" to their grandpa, but at the same time we want shield them from the pain of saying "goodbye". They are doing radiation right now and will evaluate at the end of the week as to whether to move on to chemotherapy. We are praying for a great outcome and many years left with Grandpa, but we are also aware that this may not be the reality. We are planning a trip, but staying on call in case we need to leave immediately. Mary has taken the news very well. She has had her moments of overwhelming sadness, but haven't we all. She is doing the right thing and talking about it and crying and letting it all out instead of bottling it all up inside.
Today brought another unexpected challenge... Mark woke up this morning with some pain in his abdomen. As the day wore on, it got worse and worse until he finally called our family doctor. The family doctor saw him and said that he was 99% sure it was a hernia. He called a surgeon and sent Mark up there right away. Then it was off to the hospital for pre-op paperwork, and scheduling surgery for tomorrow morning. Thankfully it is outpatient surgery and he will hopefully be home before bed time tomorrow.
I have also had some other personal upheaval this past week that has rocked our world a little bit. Let's just say that the first song on this playlist has new meaning to me these days. I am not at a place where I can talk about this, but would ask that you all pray fervently for us. Satan is attacking in many ways and on all sides. I almost feel as if we are in the thick of battle with bombs falling all around us. I can only pray that we find shelter in the shadow of His wings and that He make Himself real to us in ways that we have never seen before.
With all of this chaos and upheaval, I have yet to start working for H&R Block. I had a really hard time getting an identification number from the IRS that I needed to be able to start working there. Then we had the possibility of needing to head to VA at a moment's notice, the big snow/ice storm, and now surgery, and still the possibility of needing to head to VA at a moment's notice. My first day officially at work keeps getting pushed back. I am beginning to wonder if this is God's way of shutting that door? It would really stink because bills are mounting. I am trying to trust that God will direct my path in clear and concise steps. While working and paying off these bills would be a good thing, He may have something better in mind.
Evidently God is trying to get my attention... well, He has it. What do you want me to learn from all of this God?!? Help me to learn it quickly so those around me can stop suffering! And yet, even as I pray that I remember that while sometimes God choses to take away the hard things in life, more often, at least in our lives, He choses to give us the grace to walk through it. Prepare our hearts either way!
Along with these good things, we have had some pretty serious things as well. Just after Christmas, Grandpa Thompson (Mark's dad) was diagnosed with cancer in his stomach, throat and esophagus. It is inoperable. We are all very saddened by this news. Thankfully Mark was able to make the trip to VA to be with his parents the day that they received the final word from the doctors. We have been going back and forth about when we should take the whole family up there to visit. We desperately want our children to be able to "say goodbye" to their grandpa, but at the same time we want shield them from the pain of saying "goodbye". They are doing radiation right now and will evaluate at the end of the week as to whether to move on to chemotherapy. We are praying for a great outcome and many years left with Grandpa, but we are also aware that this may not be the reality. We are planning a trip, but staying on call in case we need to leave immediately. Mary has taken the news very well. She has had her moments of overwhelming sadness, but haven't we all. She is doing the right thing and talking about it and crying and letting it all out instead of bottling it all up inside.
Today brought another unexpected challenge... Mark woke up this morning with some pain in his abdomen. As the day wore on, it got worse and worse until he finally called our family doctor. The family doctor saw him and said that he was 99% sure it was a hernia. He called a surgeon and sent Mark up there right away. Then it was off to the hospital for pre-op paperwork, and scheduling surgery for tomorrow morning. Thankfully it is outpatient surgery and he will hopefully be home before bed time tomorrow.
I have also had some other personal upheaval this past week that has rocked our world a little bit. Let's just say that the first song on this playlist has new meaning to me these days. I am not at a place where I can talk about this, but would ask that you all pray fervently for us. Satan is attacking in many ways and on all sides. I almost feel as if we are in the thick of battle with bombs falling all around us. I can only pray that we find shelter in the shadow of His wings and that He make Himself real to us in ways that we have never seen before.
With all of this chaos and upheaval, I have yet to start working for H&R Block. I had a really hard time getting an identification number from the IRS that I needed to be able to start working there. Then we had the possibility of needing to head to VA at a moment's notice, the big snow/ice storm, and now surgery, and still the possibility of needing to head to VA at a moment's notice. My first day officially at work keeps getting pushed back. I am beginning to wonder if this is God's way of shutting that door? It would really stink because bills are mounting. I am trying to trust that God will direct my path in clear and concise steps. While working and paying off these bills would be a good thing, He may have something better in mind.
Evidently God is trying to get my attention... well, He has it. What do you want me to learn from all of this God?!? Help me to learn it quickly so those around me can stop suffering! And yet, even as I pray that I remember that while sometimes God choses to take away the hard things in life, more often, at least in our lives, He choses to give us the grace to walk through it. Prepare our hearts either way!
Friday, January 14, 2011
A Great Resource
Recently a friend forwarded a message to me from the founder of an organization called Chosen Families. I would highly recommend that everyone check them out at www.chosenfamilies.org. I love what they have to say about the name of the organization... We are chosen by God to love and be loved by these special children. What a great reminder to me that this is a high calling in life and He who has chosen me will equip me to carry it out to completion.
Happy Birthday, Baby Girl!
This week we celebrated Mary's 12th birthday. She was very disappointed that she did not get to go to school on her birthday because we had snow and ice. In fact the kids got a whole extra week off of school due to this storm. And, because I had procrastinated going to the store to buy any presents and the storm hit the day before her birthday, she did not have anything to open on her special day. But we celebrated anyway with making her a special breakfast, baking a cake that turned out very yummy, and just having a nice family day at home. I have promised to make it up to her by really celebrating big for her party. She was a trooper and did not complain too much. I am so thankful that God brought her into our lives 12 years ago. She is a blessing and we love her very much! Happy Birthday, Baby Girl!
Thursday, January 6, 2011
New Year - New School
This year has started out with some pretty major changes. Mary was so excited to learn just after Christmas that she had been accepted at a small Christian school starting this month. This is the school that she has been asking everyone to pray that she would get into. It was a huge surprise for her to learn that we had been looking into it for this year instead of next school year. She has been there for 2 days now and seems to be loving it! I know that the honeymoon period will wear off and there will be days that she doesn't enjoy it so much. But we are so thankful for the opportunity to have her in that small environment, and pray that she thrives there.
One of the things that is different with her new school is the homework load. We expected that there would be more and we are more than willing to work with her on it. She is not so excited about that aspect but has been diligent in doing her best and getting the work done. As I was sitting at the table with her last night helping her through the problems, it dawned on me... when did learning become such a chore? Didn't God make our brains to love learning? How boring it would be if we never learned anything new in our lives! Why can't learning be fun, like God intended it to be? The answer of course is because of our sin nature. We want things to be easy and without hard work. Often learning new things is hard work so therefor we decide it is not fun. I want to change that thought pattern in my children. I want them to love learning new things. So that is my prayer for them this year... that God would bring forth in them (and me) a love for learning.
One of the things that is different with her new school is the homework load. We expected that there would be more and we are more than willing to work with her on it. She is not so excited about that aspect but has been diligent in doing her best and getting the work done. As I was sitting at the table with her last night helping her through the problems, it dawned on me... when did learning become such a chore? Didn't God make our brains to love learning? How boring it would be if we never learned anything new in our lives! Why can't learning be fun, like God intended it to be? The answer of course is because of our sin nature. We want things to be easy and without hard work. Often learning new things is hard work so therefor we decide it is not fun. I want to change that thought pattern in my children. I want them to love learning new things. So that is my prayer for them this year... that God would bring forth in them (and me) a love for learning.
Reflections on 2010
I know that I am late on posting this... I have thought about it several times, but have not had time to sit down and write. Looking back on 2010, it was a year of firsts (and seconds) for us in many ways. We experienced our first inpatient hospitalization for Mary (and yes we experienced our second inpatient hospitalization as well). We made it through our first summer with Mark being away from home for the entire summer. For the first time our family has a senior in high school (how can I be that old???), and a freshman in the public high school. I went back to school for the first time in... well lets just say a long time and leave it at that. Our oldest son bought his first motorcycle. We have come face to face with cancer for the first time when Mark's dad was diagnosed with it right before the new year. Yet as I look back on 2010, one thing stands out among all other things. We serve a faithful God! He has never led us down a path that He was not walking with us (or carrying us is more like it). I am so thankful that this past year has drawn us closer to Him. I pray that He prepares our hearts for whatever is in store for 2011 and can stand assured that He will never leave us to walk this path alone.
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