Wednesday, December 7, 2011
If You Happen to Think About It...
Please say a prayer for my girl. She is really taking her grandmother's death very hard. The first few days were ok, but I think that the finality of death is starting to sink in. She is sad, and angry, and stressed! She is spending more and more of each day in tears of frustration and deep sadness. It hurts my heart to see her pain. So, if you think about it, please pray for her.
Tuesday, November 29, 2011
Pondering Life & Death....
So much has happened since my last update. It seems life has gotten in the way of blogging, which is not necessarily a bad thing... it's just, well, life.
October was a tough month in many ways, but overall it ended well. We made it past our one year anniversary of our last inpatient visit. That was reason to celebrate! Our trip to Maryland went very well and we are very thankful that we have NIH as one of our resources now. Mary was able to successfully complete getting blood work done, which is HUGE! The good news is that her lithium levels are right on target. The bad news is that her thyroid is very slow... i mean VERY slow! And it is probably due to the lithium. Boo! Thankfully there are good medications to regulate the thyroid without having to take her off of the lithium. We have already seen an improvement in her energy level since starting the synthroid. She continues to make progress in school, even with the thyroid issues which just goes to show how well this program is working. The pdoc was surprised that she could put 2 cognitive thoughts together with thyroid levels where they were, and yet she was making progress. Praise the Lord!!!
We were able to spend Thanksgiving with wonderful friends and had many moments of laughter and joy. We are so thankful for the great friends that God has put in our lives. They are always so supportive and encouraging. We are going to need that more than ever as we face the next few months... which leads to my pondering on death.
On Friday, November 25, 2011 my sweet mother-in-law went home to be with her savior. It was very unexpected and quite a shock to our whole family. God was merciful in that we were all able to go to the hospital to say goodbye to her and Mark was able to spend all day with her while she was still awake and alert. We are so thankful for her life and the influence that she had on each one of us. She was a prayer warrior. We know that she is rejoicing to see her husband again after almost 9 months of life on earth without him. We know that he was waiting eagerly to greet her as she arrived in heaven and has been busy showing her around the snow-making factory. There is evidence of that today as we are having an early snow here in Georgia. It is not much snow, not accumulating at all. But enough that my little boy came running in from recess to tell me that the snow was falling and had stuck to his jacket. He knew that grandpa was smiling and celebrating that his bride was with him again. At the same time, her death leaves quite a void to those of us left behind. Mary is taking it especially hard. She is sad and angry all at the same time. Life and death just do not make sense to her right now. Why is there suffering here on earth? Why did her grandparents have to die? She is grateful (as are we all) that her grandmother did not have to suffer, and knows that was better for her. But she wanted more time to say goodbye, to prepare, as if one can ever fully prepare for the death of a loved one. We would appreciate everyone's prayers as we navigate the next few months and try to help all of our kids process this in healthy ways.
October was a tough month in many ways, but overall it ended well. We made it past our one year anniversary of our last inpatient visit. That was reason to celebrate! Our trip to Maryland went very well and we are very thankful that we have NIH as one of our resources now. Mary was able to successfully complete getting blood work done, which is HUGE! The good news is that her lithium levels are right on target. The bad news is that her thyroid is very slow... i mean VERY slow! And it is probably due to the lithium. Boo! Thankfully there are good medications to regulate the thyroid without having to take her off of the lithium. We have already seen an improvement in her energy level since starting the synthroid. She continues to make progress in school, even with the thyroid issues which just goes to show how well this program is working. The pdoc was surprised that she could put 2 cognitive thoughts together with thyroid levels where they were, and yet she was making progress. Praise the Lord!!!
We were able to spend Thanksgiving with wonderful friends and had many moments of laughter and joy. We are so thankful for the great friends that God has put in our lives. They are always so supportive and encouraging. We are going to need that more than ever as we face the next few months... which leads to my pondering on death.
On Friday, November 25, 2011 my sweet mother-in-law went home to be with her savior. It was very unexpected and quite a shock to our whole family. God was merciful in that we were all able to go to the hospital to say goodbye to her and Mark was able to spend all day with her while she was still awake and alert. We are so thankful for her life and the influence that she had on each one of us. She was a prayer warrior. We know that she is rejoicing to see her husband again after almost 9 months of life on earth without him. We know that he was waiting eagerly to greet her as she arrived in heaven and has been busy showing her around the snow-making factory. There is evidence of that today as we are having an early snow here in Georgia. It is not much snow, not accumulating at all. But enough that my little boy came running in from recess to tell me that the snow was falling and had stuck to his jacket. He knew that grandpa was smiling and celebrating that his bride was with him again. At the same time, her death leaves quite a void to those of us left behind. Mary is taking it especially hard. She is sad and angry all at the same time. Life and death just do not make sense to her right now. Why is there suffering here on earth? Why did her grandparents have to die? She is grateful (as are we all) that her grandmother did not have to suffer, and knows that was better for her. But she wanted more time to say goodbye, to prepare, as if one can ever fully prepare for the death of a loved one. We would appreciate everyone's prayers as we navigate the next few months and try to help all of our kids process this in healthy ways.
Friday, September 9, 2011
A Long Overdue Update...
First, my apologies for not posting an update earlier. I know many of you have been praying for our time in Maryland and patiently waiting to hear the outcome.
Our trip to Maryland went off without a hitch. It was a great experience and much better than I had ever hoped it could be. Everyone was very kind and compassionate (which has not always been our experience with hospitals). The accommodations there are fabulous, a real kid's paradise. The plane ride there and back was great. And the testing that they did on Mary to see if she qualifies for their study confirmed her diagnosis... well, kind of confirmed her diagnosis. They did agree that she is bipolar, but instead of the severe bipolar 1 diagnosis that she has been given by our p-doc, they said she was a less severe bipolar 2. The reason they believe that she is bipolar 2 instead of bipolar 1 is the level of mania that they have seen documented and described by us. In their opinion, she is hypo-manic instead of full blown manic. I disagree with that part of the diagnosis. She does suffer from hypo-manic episodes and most of her cycling has been more hypo-manic than full blown manic. But, I think that is because we are hyper vigilant in tweaking her medications when we see the mania approaching. We call the doctor if there are more than 2 nights in a row with little or no sleep. We track everything and know what time of month/year to be extra careful. We have her in therapy every week to help her learn what her triggers are and catch it before it becomes full blown mania.
Regardless of that difference in opinion, Mary does qualify for being part of their research study and she would love to participate. The other kids have been invited to participate as well, being siblings of a bipolar child. So... we are headed back up to Maryland the middle of October. We are excited to be part of the study and hope that in the long run it will benefit Mary and others who suffer with this disorder. Unfortunately we won't be getting the testing results as we had originally hoped for. Her data becomes part of a pool of data that is combined to study a collective group of kids. We will still probably need to go ahead and contact the local school system to have a full psych eval done in the near future. But there are so many positives to participating that we are still going to go ahead with it.
Our trip to Maryland went off without a hitch. It was a great experience and much better than I had ever hoped it could be. Everyone was very kind and compassionate (which has not always been our experience with hospitals). The accommodations there are fabulous, a real kid's paradise. The plane ride there and back was great. And the testing that they did on Mary to see if she qualifies for their study confirmed her diagnosis... well, kind of confirmed her diagnosis. They did agree that she is bipolar, but instead of the severe bipolar 1 diagnosis that she has been given by our p-doc, they said she was a less severe bipolar 2. The reason they believe that she is bipolar 2 instead of bipolar 1 is the level of mania that they have seen documented and described by us. In their opinion, she is hypo-manic instead of full blown manic. I disagree with that part of the diagnosis. She does suffer from hypo-manic episodes and most of her cycling has been more hypo-manic than full blown manic. But, I think that is because we are hyper vigilant in tweaking her medications when we see the mania approaching. We call the doctor if there are more than 2 nights in a row with little or no sleep. We track everything and know what time of month/year to be extra careful. We have her in therapy every week to help her learn what her triggers are and catch it before it becomes full blown mania.
Regardless of that difference in opinion, Mary does qualify for being part of their research study and she would love to participate. The other kids have been invited to participate as well, being siblings of a bipolar child. So... we are headed back up to Maryland the middle of October. We are excited to be part of the study and hope that in the long run it will benefit Mary and others who suffer with this disorder. Unfortunately we won't be getting the testing results as we had originally hoped for. Her data becomes part of a pool of data that is combined to study a collective group of kids. We will still probably need to go ahead and contact the local school system to have a full psych eval done in the near future. But there are so many positives to participating that we are still going to go ahead with it.
Saturday, August 6, 2011
Bethesda, Here We Come...
This past week, we got the call from NIMH (National Institute for Mental Health), inviting us to come to Bethesda for a one-day interview to see if Mary meets the criteria to participate in the study they are doing on bipolar disorder in children and how it affects their brain process. We are very excited about this possibility. It has taken quite a while to get to this point (several hour+ long phone interviews, NIMH playing phone tag with the p-doc, passing their initial assessment, answering a million questions about whether she is really bipolar or just chronically irritable, etc.), and the trip doesn't guarantee that we will get into the study. But we are excited about it just the same.
I tried to schedule the trip before school starts. Unfortunately that was not possible, so we will have to take a couple of days off. At least it will be before the end of August. NIMH is paying for us to fly to Bethesda on August 24th, the interview will take all day August 25th, and we will fly home on August 26th. Mary is really excited about flying on an airplane. She hasn't been in an airplane since she was 5. I hope that the excitement continues and doesn't turn to anxiety. After the interview, NIMH will make a final decision as to whether Mary meets all of their specific criteria for this study. If she does then they will invite us back for some extensive testing which will include brain imaging, psychological tests, etc. I still have some questions as to the extent of the testing and exactly what it will tell us. Hopefully this trip will answer some of those questions. We still need to do a full psychological evaluation to know where she is educationally with her learning disability. If that will be covered by the testing at NIMH then that would be wonderful. If not, then I need to start the process with the public school system. I am praying that the whole trip will be a good experience and that if the study is something that we should participate in, then God would make it abundantly clear.
I tried to schedule the trip before school starts. Unfortunately that was not possible, so we will have to take a couple of days off. At least it will be before the end of August. NIMH is paying for us to fly to Bethesda on August 24th, the interview will take all day August 25th, and we will fly home on August 26th. Mary is really excited about flying on an airplane. She hasn't been in an airplane since she was 5. I hope that the excitement continues and doesn't turn to anxiety. After the interview, NIMH will make a final decision as to whether Mary meets all of their specific criteria for this study. If she does then they will invite us back for some extensive testing which will include brain imaging, psychological tests, etc. I still have some questions as to the extent of the testing and exactly what it will tell us. Hopefully this trip will answer some of those questions. We still need to do a full psychological evaluation to know where she is educationally with her learning disability. If that will be covered by the testing at NIMH then that would be wonderful. If not, then I need to start the process with the public school system. I am praying that the whole trip will be a good experience and that if the study is something that we should participate in, then God would make it abundantly clear.
Friday, July 22, 2011
Losing Momentum...
These past few weeks have had lots of ups and downs, but that is nothing new or different for our lives. We had a mostly good trip to WV. There were a couple of days that I thought we would have to bug out early and head for home, but then Mary settled in and the week ended up on a positive note. It was so great to be able to spend time with Mark and see the ministry in action there. We visited an old historic fort and homestead while we were there. On the way home we stopped at a nice place to walk around which overlooks the longest arch bridge in the world.
This week the kids attended a VBS at a local church (which also happens to be where their school is located). They had a blast. Mary was too old to be a VBS-er but she was a helper in the craft room. Noah was able to make a few new friends with kids he will be in school with this coming fall.
In between all the packing, unpacking, VBSing, etc., our school work has really taken a backseat. While the breaks from it have been nice, it has also reinforced to me the need for it. After taking the 2 weeks off for our trip to WV, the first few days back were filled with lots of weeping and wailing and gnashing of teeth. The information "lost" during that break was astounding. The struggle to get back into it made me wobble between being ready to give the whole thing up completely, and knowing that if it was this bad after just two weeks, how much information would be lost if it was the whole summer. I have to admit that I am losing momentum. The kids are winning the fight. I am weary and tired of fighting the battle that seems only to hold on to existing territory. We are not making any "progress". Mary is no closer to knowing her multiplication tables, and Noah's handwriting is still atrocious. Part of me just wants to say forget it. Maybe if I saw even a little glimmer of improvement I would be more motivated to continue the fight. But for tonight, I am tired!
This week the kids attended a VBS at a local church (which also happens to be where their school is located). They had a blast. Mary was too old to be a VBS-er but she was a helper in the craft room. Noah was able to make a few new friends with kids he will be in school with this coming fall.
In between all the packing, unpacking, VBSing, etc., our school work has really taken a backseat. While the breaks from it have been nice, it has also reinforced to me the need for it. After taking the 2 weeks off for our trip to WV, the first few days back were filled with lots of weeping and wailing and gnashing of teeth. The information "lost" during that break was astounding. The struggle to get back into it made me wobble between being ready to give the whole thing up completely, and knowing that if it was this bad after just two weeks, how much information would be lost if it was the whole summer. I have to admit that I am losing momentum. The kids are winning the fight. I am weary and tired of fighting the battle that seems only to hold on to existing territory. We are not making any "progress". Mary is no closer to knowing her multiplication tables, and Noah's handwriting is still atrocious. Part of me just wants to say forget it. Maybe if I saw even a little glimmer of improvement I would be more motivated to continue the fight. But for tonight, I am tired!
Tuesday, June 28, 2011
One Step Forward, One Step Back...
When will I learn that you can't start a new med and change the dose of an existing med at the same time??? And yet that is exactly what I did this past weekend! We decided at her last p-doc appointment to raise the dose of Buspar and add in Rozerem to help her sleep better. She is definitely falling asleep faster (half an hour from the time she takes her medicine instead of 1 1/2 hours or more).
The last couple of days have brought increasing anxiety, irritability, and overall unrest. Today she has spent quite a bit of time telling me that her brain is rushing, rushing, rushing and won't stop. She was on the verge of meltdown most of the day and did meltdown a couple of times tonight. The only thing that I can think of that has changed is the meds, so we are taking a step back starting tomorrow. The other thing we are not sure about is whether these feelings are a side effect that will go away with time as her body adjusts to the medicine, or if it is something that will continue indefinitely, or if it is even caused by the medicine at all? Since we are not sure if it is the med increase or the new med that is possibly causing this change in her, we will drop the older med back down to what it was before the weekend. What complicates this further is that we are supposed to go see Mark in WV next week. I am really hoping to gain some stability back before we leave! If we can't, it will be an interesting week to say the least.
The last couple of days have brought increasing anxiety, irritability, and overall unrest. Today she has spent quite a bit of time telling me that her brain is rushing, rushing, rushing and won't stop. She was on the verge of meltdown most of the day and did meltdown a couple of times tonight. The only thing that I can think of that has changed is the meds, so we are taking a step back starting tomorrow. The other thing we are not sure about is whether these feelings are a side effect that will go away with time as her body adjusts to the medicine, or if it is something that will continue indefinitely, or if it is even caused by the medicine at all? Since we are not sure if it is the med increase or the new med that is possibly causing this change in her, we will drop the older med back down to what it was before the weekend. What complicates this further is that we are supposed to go see Mark in WV next week. I am really hoping to gain some stability back before we leave! If we can't, it will be an interesting week to say the least.
Friday, June 24, 2011
Some Answers to Your Prayers...
A huge thank you to everyone who has been praying for us over the past few weeks regarding bloodwork for my girl. No, we have not yet been successful in getting it done, but we have made some giant steps forward towards that goal. Many of you know that even the mention of having a needle come anywhere near Mary has been enough to send her into a complete meltdown, the effects of which would last for days or weeks. She has threatened to stop taking her medications if it was going to involve having blood drawn. She has spent many hours worrying about it and getting stuck on the fears that accompany those thoughts. Previously even the mention of a needle or the sight of blood would make her close in on herself and completely shut down. Well, this past week, we have not only been able to talk calmly and (mostly) rationally about the need to have this done in the near future (and not just once, but multiple times), but she has also agreed that she would be willing to work with a cognitive-behavioral therapist to help her conquer her fears. She is still very nervous and wants to cry when we talk about it, but she doesn't cry, which is so huge! A few months ago talking about it at the p-doc's office sent her into a crying, yelling fit, resulting in her telling the p-doc that she hates her and that she thinks the p-doc is the worst doc in the whole world. This last visit, Mary actually brought up the subject. Now, it was to tell the doctor that she did not want to talk about it, but it was still a step in the right direction. And of course the p-doc took the opportunity to talk about it a little bit and pointed out to Mary how much she was maturing and how proud she was of the fact that she was talking about it without crying.
So, for all of you out there praying for my girl, please keep it up!
Another cool way that I am seeing God answer prayers involves things that I didn't even know to ask people to be praying about. I love when God does that. He has the answers all planned out in advance and it seems that almost the moment it occurs to me that I need to be praying about this, boom, the answer is there. Anyway, I have been thinking a lot about the learning issues associated with bipolar disorder. Mary also has a learning disability so I have been wondering just how much of the learning issues are a result of the learning disability, how much is from the bipolar disorder, and how much is from the medications. It is all just such a soup pot in there! As I was talking to the p-doc this week about these thoughts, she recommended that we go ahead and get a full psychological test done. She has had two of them in the past, but the last one was in 2007 so it is time to pursue that again. Now, normally this is something that the public school would do for us (if Mary was still in the public school). They will still do it for us since Mary is still considered eligible to receive services from the school, but we are going to have to jump through a few hoops and the process won't even start until school is back in session in August. However, the p-doc also recommended looking into maybe going to a local college or checking with NIMH to see if they are doing any research protocols that would involve these types of tests (which if we had to pay for out of pocket would cost thousands of dollars!). Now, here's the cool part... are you ready... NIMH just happens to be doing a study on the brain function and course of illness in pediatric bipolar patients, and they are still recruiting participants. I have had several phone conversations with them and we are in the process of seeing if Mary fits their protocol for the study, but if it works out, it would be so great! She would receive all the tests that a school or private psychologist would do plus some, and it would not cost us a thing. AND... get this... it is a long term study so it would also provide these tests probably on a yearly basis to monitor her progress as she grows up. Of course it is not a sure thing. We do not know if we fit their protocol, or if they will accept us into the study. But the possibilities just give me goose bumps!
So, for all of you out there praying for my girl, please keep it up!
Another cool way that I am seeing God answer prayers involves things that I didn't even know to ask people to be praying about. I love when God does that. He has the answers all planned out in advance and it seems that almost the moment it occurs to me that I need to be praying about this, boom, the answer is there. Anyway, I have been thinking a lot about the learning issues associated with bipolar disorder. Mary also has a learning disability so I have been wondering just how much of the learning issues are a result of the learning disability, how much is from the bipolar disorder, and how much is from the medications. It is all just such a soup pot in there! As I was talking to the p-doc this week about these thoughts, she recommended that we go ahead and get a full psychological test done. She has had two of them in the past, but the last one was in 2007 so it is time to pursue that again. Now, normally this is something that the public school would do for us (if Mary was still in the public school). They will still do it for us since Mary is still considered eligible to receive services from the school, but we are going to have to jump through a few hoops and the process won't even start until school is back in session in August. However, the p-doc also recommended looking into maybe going to a local college or checking with NIMH to see if they are doing any research protocols that would involve these types of tests (which if we had to pay for out of pocket would cost thousands of dollars!). Now, here's the cool part... are you ready... NIMH just happens to be doing a study on the brain function and course of illness in pediatric bipolar patients, and they are still recruiting participants. I have had several phone conversations with them and we are in the process of seeing if Mary fits their protocol for the study, but if it works out, it would be so great! She would receive all the tests that a school or private psychologist would do plus some, and it would not cost us a thing. AND... get this... it is a long term study so it would also provide these tests probably on a yearly basis to monitor her progress as she grows up. Of course it is not a sure thing. We do not know if we fit their protocol, or if they will accept us into the study. But the possibilities just give me goose bumps!
Tuesday, June 14, 2011
Prayers Appreciated...
We are nearing the deadline for getting some blood work done and we are no closer to actually getting the blood from my daughter's body and into the little tube. I know that there isn't really a "deadline", but we do have a pdoc appointment next week and having the results from lab work will help us make better decisions regarding medications. My prayer has been and will continue to be that God would miraculously intervene here and change her fear into peace. I want her to be completely okay with going to the doctor's office and having the blood drawn. I want her to be able to say that she did it and it was no big deal. I want this "monster" in her head that has built this up to traumatic proportions to be silenced. But unless she is willing to take the first step, those things are not going to happen. Please pray with us!
Monday, June 6, 2011
One Week Down...
We made it through the first week of our summer break! After the first couple of days of complaining, the kids have settled in to the routine of doing a little bit of school work to keep their brains working. Mary is doing really well at it and even worked ahead of the "schedule" so she could have an extra day off on Friday. She has also discovered the joy of reading!!! I am sooo excited about this. I have always been a big reader myself. Most of the time, I would much rather sit down with a good book and good cup of coffee than watch tv. So, it is wonderful to see Mary start to develop that habit as well. Last week she read almost a book a day. We had to make a couple of trips to the library to get more books. I hope that continues!!! She was also super focused on writing a new story of her own, typing a story that she had written last year, and working on drawing some new pictures.
All of this focused activity is wonderful... but on the flip side of that, it could also be a sign of being just slightly manic. I hate that I think that way!!! It is awful that whenever she is having a good bout of creativity, I always look for the signs of mania. But it is also a fact of life for us. And this weekend has proven that it could possibly be the sign of a manic or more mixed cycling. She has been "off" and irritable all weekend. It could be the changes in routine (daddy left for his summer job in WV). It could be the excitement of lots of activities (church picnic on Saturday, day spent with friends on Sunday, the extreme heat wave we are having here in GA, etc.) She has admitted that she is feeling overwhelmed and stressed again. Loud noises, physical discomfort, and other things seem to be more stressful than they were last week for her. I had a moment (or two) of panic at the church picnic when she was very irritable and then I could not find her. You know when you just have a gut feeling that something is not right and you need to physically see your child to know that they are ok? I had visions of previous summers when she had done some extreme things like trying to jump from a moving car, or refusing to let me get near her in the mall parking lot (boy didn't we draw attention that day). I did find her and we talked about how if she began to feel overwhelmed enough to run away that she needed to come get me so we could "run away" together (i.e. go to the car and cool off in the AC for a few minutes to regroup). At least she is talking with me about the stress, which is a good thing. For now, we will just keep a close eye on her and hope that the mood levels out again quickly! Prayers appreciated!!!
All of this focused activity is wonderful... but on the flip side of that, it could also be a sign of being just slightly manic. I hate that I think that way!!! It is awful that whenever she is having a good bout of creativity, I always look for the signs of mania. But it is also a fact of life for us. And this weekend has proven that it could possibly be the sign of a manic or more mixed cycling. She has been "off" and irritable all weekend. It could be the changes in routine (daddy left for his summer job in WV). It could be the excitement of lots of activities (church picnic on Saturday, day spent with friends on Sunday, the extreme heat wave we are having here in GA, etc.) She has admitted that she is feeling overwhelmed and stressed again. Loud noises, physical discomfort, and other things seem to be more stressful than they were last week for her. I had a moment (or two) of panic at the church picnic when she was very irritable and then I could not find her. You know when you just have a gut feeling that something is not right and you need to physically see your child to know that they are ok? I had visions of previous summers when she had done some extreme things like trying to jump from a moving car, or refusing to let me get near her in the mall parking lot (boy didn't we draw attention that day). I did find her and we talked about how if she began to feel overwhelmed enough to run away that she needed to come get me so we could "run away" together (i.e. go to the car and cool off in the AC for a few minutes to regroup). At least she is talking with me about the stress, which is a good thing. For now, we will just keep a close eye on her and hope that the mood levels out again quickly! Prayers appreciated!!!
Sunday, May 29, 2011
The Start of Summer...
I can't believe that it has been over a month since I last posted! I am sure you know how the month of May can fly by with all of the end of the school year activities. Multiply that by 4 kids in 4 separate schools, and, well, you get the idea. It has felt like a whirlwind of nonstop activity around here. I am happy to report that all the kids finished strong in their various schools. I am also happy to report that next year we will be cutting our schools in half! Our oldest graduated from high school with honors, and we decided to move our youngest to the private school that Mary has been attending for the last half of this year. So 3 kids in 2 schools seems to be much more manageable at this point in our lives.
Mary seems to be leveling out somewhat. She is still cycling slightly, but the swings are not as dramatic. The anxiety medication seems to be helping (a big PRAISE GOD!!). A month ago I would have said that the raging and suicidal thinking was simmering just below the surface. She was like a caged lion, pacing and agitated just waiting for something to throw her into a meltdown. Now she seems to be much more relaxed and less on-edge. She is still pacing and rocking but not agitated.
Our next big hurdle will be to have blood drawn. We were told by our p-doc that we could wait until school was over, and well, school is over. We have been trying different doses of sedative to try and find one that would relax her enough to have it done. Unfortunately we have not yet found the right dose (or maybe just haven't found the right medication?). The one that we have been tweaking has some pretty strong side effects as it is clearing her system. She goes back to the highly agitated state and is very emotional. It does not sedate her enough (in my opinion) to have the blood drawn without the typical hysteria that accompanies it, and of course if we force the blood draw on her, we risk having her develop PTSD because of it. I think that if we could just find the right sedative at the right dose to make a few blood draws painless and non threatening we would be well on our way to helping her conquer the overwhelming fear that she has of needles. If we can just show her that she can do this, it will make a huge difference.
I am determined that the kids not lose much of what they have learned this school year over their summer break. So, I am going into this break armed with some good handwriting books, math reviews, and grammar reviews. We have picked out a Psalm in the Bible to memorize (a few verses each week), and they also have picked out the Chronicles of Narnia to read. We will spend a little time each day doing these and I really hope that it helps keep their brains focused on learning. I will need encouragement to keep this up as it is my nature to start strong and then slack off as time goes by. I am threatening that unless they get their assigned work done each day they won't be allowed to go and do fun things with friends. I am also dangling a carrot in the form of a reward at the end of the summer for each week that they complete their work. Maybe these will motivate us all to stay consistent?
As we begin our summer break, I am praying for continued stability, a smooth transition, and a summer we can look back on with fond memories. It will be tough as Mark will be out of town most of the summer, but my prayer is that we all lean more heavily on Christ when we are feeling most overwhelmed. I want to recognize the hard days for what they are- a reminder that this world is not our true home and can never fully satisfy us. There is a new song out there by Laura Story called Blessings. If you have not heard it you can find it on i-Tunes or see videos on YouTube. I highly recommend listening, really listening to the words. It brings me to tears every time! Now, go listen to it...
Mary seems to be leveling out somewhat. She is still cycling slightly, but the swings are not as dramatic. The anxiety medication seems to be helping (a big PRAISE GOD!!). A month ago I would have said that the raging and suicidal thinking was simmering just below the surface. She was like a caged lion, pacing and agitated just waiting for something to throw her into a meltdown. Now she seems to be much more relaxed and less on-edge. She is still pacing and rocking but not agitated.
Our next big hurdle will be to have blood drawn. We were told by our p-doc that we could wait until school was over, and well, school is over. We have been trying different doses of sedative to try and find one that would relax her enough to have it done. Unfortunately we have not yet found the right dose (or maybe just haven't found the right medication?). The one that we have been tweaking has some pretty strong side effects as it is clearing her system. She goes back to the highly agitated state and is very emotional. It does not sedate her enough (in my opinion) to have the blood drawn without the typical hysteria that accompanies it, and of course if we force the blood draw on her, we risk having her develop PTSD because of it. I think that if we could just find the right sedative at the right dose to make a few blood draws painless and non threatening we would be well on our way to helping her conquer the overwhelming fear that she has of needles. If we can just show her that she can do this, it will make a huge difference.
I am determined that the kids not lose much of what they have learned this school year over their summer break. So, I am going into this break armed with some good handwriting books, math reviews, and grammar reviews. We have picked out a Psalm in the Bible to memorize (a few verses each week), and they also have picked out the Chronicles of Narnia to read. We will spend a little time each day doing these and I really hope that it helps keep their brains focused on learning. I will need encouragement to keep this up as it is my nature to start strong and then slack off as time goes by. I am threatening that unless they get their assigned work done each day they won't be allowed to go and do fun things with friends. I am also dangling a carrot in the form of a reward at the end of the summer for each week that they complete their work. Maybe these will motivate us all to stay consistent?
As we begin our summer break, I am praying for continued stability, a smooth transition, and a summer we can look back on with fond memories. It will be tough as Mark will be out of town most of the summer, but my prayer is that we all lean more heavily on Christ when we are feeling most overwhelmed. I want to recognize the hard days for what they are- a reminder that this world is not our true home and can never fully satisfy us. There is a new song out there by Laura Story called Blessings. If you have not heard it you can find it on i-Tunes or see videos on YouTube. I highly recommend listening, really listening to the words. It brings me to tears every time! Now, go listen to it...
Tuesday, April 26, 2011
Another Milestone!
Today marks the 6 month point since Mary's last inpatient stay at the hospital. Yay! We are praying that this continues and we won't see the inside of a psychiatric hospital for very long time.
Saturday, April 16, 2011
We've Come A Long Way Baby...
One year ago right now I was chasing my daughter down the middle of the street in our neighborhood, praying that no cars would come by. At the same time, I was on the phone with a 911 operator trying to explain the situation... I have an 11 year old bipolar child who is trying to run away from home and I need help transporting her to the hospital. This was the beginning of a very long day, a very long week, and a very long year. I am so thankful that this morning my daughter woke up smiling and happy. She is not suicidal, nor is she considering running away from home. She has a fun day planned with friends, we have a new medicine to try for the anxiety that rules her thinking, and the outlook on the future looks a little brighter. Is she completely healthy and stable? Not by a long shot! She is still all over the board as far as emotions. But at least for this very moment we are in a much better place than we were a year ago today. Thank you God!!!
Wednesday, April 13, 2011
Thoughts on Perception & Thinking Errors...
This week at our tdoc appointment, our wonderful doctor gave me a hand out that she had put together regarding the perception and thinking errors that bipolar people, children in particular, struggle with. She took much of the information from a great book entitled The Bipolar Handbook for Children, Teens, and Families and condensed it down to two pages. As we were discussing where Mary is right now emotionally (she is ALL OVER THE PLACE!), I could really see where these errors in her thinking process are having a dramatic effect on her. Here are just a few things we are seeing...
Gets stuck: runs into a problem and is unable to figure out what to do because can't visualize the next step. This leads to getting very upset or giving up... feeling hopeless. I see this often in Mary when she encounters a problem. It doesn't matter how I try to break down a step by step solution for her, she can't visualize past what she is feeling/seeing right now. This leads to the next one...
Negativity: difficulty with cause, effect, and stepwise thinking. It is hard to visualize or predict what will happen in the future. If feeling unsuccessful, assumes that it is always going to stay that way because unable to visualize how to succeed. This is a real area of struggle right now. It is hard to find joy in the situation when you feel like you are always going to be a failure, you are never going to learn this, life is always going to be hard, etc. This negative self talk only serves to make her feel more hopeless. It is like trying to fight darkness with darkness.
Intrusive thoughts: There is a failure of the mental gate to keep important thoughts in and unwanted thoughts out of the mind. This makes it hard to concentrate or follow conversations. Sometimes these unwanted thoughts get stuck or keep bombarding the mind over and over like a broken record. These thoughts are extremely difficult to control and result in strong emotions which appear suddenly. These intrusive thoughts are fueled by the negativity that she is feeling towards herself.
Leaky Interpersonal Boundaries: Hard to tell where he/she stops and other people begin- unable to distinguish their own thoughts and feelings from those of others. This is a huge one that Mary is struggling with right now. If someone is sad, then Mary is sad, but it doesn't just stop there. Mary takes that sadness and multiplies it by a hundred until she is feeling scared, hopeless, and overwhelmed. The same way with anger. If someone is angry with another family member, Mary takes that on and compounds it to the point that the people involved have become suicidal in her mind. Worrying about disappointing people is another area that she is struggling with. If she feels like someone is disappointed in her, she becomes disappointed in herself... cue the negative and intrusive thoughts... you see the cycle?
Over-thinking: Carrying assumptions/conclusions far beyond that justified by information. Exaggerated way of thinking. This also comes into play with the leaky interpersonal boundaries. If she perceives that someone is just a little bit sad, then she over thinks it to catastrophic levels. If she perceives that someone is even a little disappointed in her work, she over thinks it to the point that everything she does is a disappointment. And because she has some trouble interpreting social cues at times, a lot of what she takes on herself are just that... assumptions. She assumes that because she gets a C instead of an A that she has disappointed everyone. That is so totally not the case, but she can not be convinced. Again this leads to the negative and intrusive thoughts.
It saddens me that these perception and thinking errors can have such a profound effect on my daughter's everyday life.
Gets stuck: runs into a problem and is unable to figure out what to do because can't visualize the next step. This leads to getting very upset or giving up... feeling hopeless. I see this often in Mary when she encounters a problem. It doesn't matter how I try to break down a step by step solution for her, she can't visualize past what she is feeling/seeing right now. This leads to the next one...
Negativity: difficulty with cause, effect, and stepwise thinking. It is hard to visualize or predict what will happen in the future. If feeling unsuccessful, assumes that it is always going to stay that way because unable to visualize how to succeed. This is a real area of struggle right now. It is hard to find joy in the situation when you feel like you are always going to be a failure, you are never going to learn this, life is always going to be hard, etc. This negative self talk only serves to make her feel more hopeless. It is like trying to fight darkness with darkness.
Intrusive thoughts: There is a failure of the mental gate to keep important thoughts in and unwanted thoughts out of the mind. This makes it hard to concentrate or follow conversations. Sometimes these unwanted thoughts get stuck or keep bombarding the mind over and over like a broken record. These thoughts are extremely difficult to control and result in strong emotions which appear suddenly. These intrusive thoughts are fueled by the negativity that she is feeling towards herself.
Leaky Interpersonal Boundaries: Hard to tell where he/she stops and other people begin- unable to distinguish their own thoughts and feelings from those of others. This is a huge one that Mary is struggling with right now. If someone is sad, then Mary is sad, but it doesn't just stop there. Mary takes that sadness and multiplies it by a hundred until she is feeling scared, hopeless, and overwhelmed. The same way with anger. If someone is angry with another family member, Mary takes that on and compounds it to the point that the people involved have become suicidal in her mind. Worrying about disappointing people is another area that she is struggling with. If she feels like someone is disappointed in her, she becomes disappointed in herself... cue the negative and intrusive thoughts... you see the cycle?
Over-thinking: Carrying assumptions/conclusions far beyond that justified by information. Exaggerated way of thinking. This also comes into play with the leaky interpersonal boundaries. If she perceives that someone is just a little bit sad, then she over thinks it to catastrophic levels. If she perceives that someone is even a little disappointed in her work, she over thinks it to the point that everything she does is a disappointment. And because she has some trouble interpreting social cues at times, a lot of what she takes on herself are just that... assumptions. She assumes that because she gets a C instead of an A that she has disappointed everyone. That is so totally not the case, but she can not be convinced. Again this leads to the negative and intrusive thoughts.
It saddens me that these perception and thinking errors can have such a profound effect on my daughter's everyday life.
Monday, April 4, 2011
Breaking the Silence
Sorry for the long silence. I have thought many times about sitting down to write, but really haven't had much to say. Well, that is not really true. There is always lots to say, but so often it is the same old, same old. We continue with our daily ups and downs. Spring is in the air and with it the mania that typically accompanies it.
We are fast approaching the one year anniversary of Mary's first inpatient hospital stay. I have to confess that the date looms huge in my head. As the day gets closer, I find myself comparing this year to last year and previous years before that. I find myself fully prepared to have to do it again, and yet praying that we don't get to that point.
Overall this year is much different than last year. I think we have a better grip on the cycling with her current medications, and that a year of maturity makes a huge difference in Mary's ability to cope. But I am also aware that while she is a very "happy manic" right now, that can change in an instant.
There is also the need to have blood work done... it has been six months since her levels were checked last (during her second inpatient hospital stay) and it really needs to be done again. Of course her reaction to that was "absolutely no way, not doing it!" After that she proceeded to tell the pdoc that she is the worst doctor ever and then went to hide on the couch with her head buried under the cushions. She threatened to stop taking her medicines if that was the reason she has to have blood work done. The pdoc was very gracious and let her rant. When things had calmed down and we were in the car on the way home, I was not so gracious. I let her know in no uncertain terms that to stop taking her medicine without a doctor's approval and oversight would kill her. Thankfully she understands that and told me she was just frustrated and does not plan to stop taking her medicine. Phewww!
Anyway, back to the blood work... we are trying to come up with a good plan to sedate her enough not to care about having blood drawn, but not so much that it would be considered conscience sedation. We don't want her to have to spend hours being monitored at the doctor's office or take any unnecessary risks. Since sedatives make her sleepy, and we don't want her to miss school because of it, we will be having it done over a break from school or right after school lets out for the summer. In the meantime, we will try and figure out what a good dose of sedative is on an empty stomach, first thing in the morning, starting at the very lowest dose and working up slowly from there.
Mary continues to love her new school. We are so thankful for the opportunity to have her there and for all the wonderful people in the school who love her and accept her just the way she is. What a blessing from God!!! I know that having her at this school has played a huge role in helping her cope both with the death of her grandfather as well as the spring mania. There are plans to partner with a program called the Arrowsmith program next year for children with learning disabilities. If anyone has heard anything about this program, please let me know. It looks like it could potentially be a great thing for Mary.
We are fast approaching the one year anniversary of Mary's first inpatient hospital stay. I have to confess that the date looms huge in my head. As the day gets closer, I find myself comparing this year to last year and previous years before that. I find myself fully prepared to have to do it again, and yet praying that we don't get to that point.
Overall this year is much different than last year. I think we have a better grip on the cycling with her current medications, and that a year of maturity makes a huge difference in Mary's ability to cope. But I am also aware that while she is a very "happy manic" right now, that can change in an instant.
There is also the need to have blood work done... it has been six months since her levels were checked last (during her second inpatient hospital stay) and it really needs to be done again. Of course her reaction to that was "absolutely no way, not doing it!" After that she proceeded to tell the pdoc that she is the worst doctor ever and then went to hide on the couch with her head buried under the cushions. She threatened to stop taking her medicines if that was the reason she has to have blood work done. The pdoc was very gracious and let her rant. When things had calmed down and we were in the car on the way home, I was not so gracious. I let her know in no uncertain terms that to stop taking her medicine without a doctor's approval and oversight would kill her. Thankfully she understands that and told me she was just frustrated and does not plan to stop taking her medicine. Phewww!
Anyway, back to the blood work... we are trying to come up with a good plan to sedate her enough not to care about having blood drawn, but not so much that it would be considered conscience sedation. We don't want her to have to spend hours being monitored at the doctor's office or take any unnecessary risks. Since sedatives make her sleepy, and we don't want her to miss school because of it, we will be having it done over a break from school or right after school lets out for the summer. In the meantime, we will try and figure out what a good dose of sedative is on an empty stomach, first thing in the morning, starting at the very lowest dose and working up slowly from there.
Mary continues to love her new school. We are so thankful for the opportunity to have her there and for all the wonderful people in the school who love her and accept her just the way she is. What a blessing from God!!! I know that having her at this school has played a huge role in helping her cope both with the death of her grandfather as well as the spring mania. There are plans to partner with a program called the Arrowsmith program next year for children with learning disabilities. If anyone has heard anything about this program, please let me know. It looks like it could potentially be a great thing for Mary.
Tuesday, March 8, 2011
Thankful for a Good Night's Sleep
I am sorry for the long silence on here. It seems that life has gotten in the way of blogging lately and I really have not had much to share. Well that is not entirely true, there is lots going on... but much of it is the same old, same old and I don't want to bore everyone with the same old stuff.
Today, however, I am very thankful for a good night's sleep for my girl. She has had a nagging cough the past week and it had gotten to the point that she was not sleeping at night because she was coughing all night long. Because of all the different prescription medications that she takes to manage her bipolar disorder, many over-the-counter medicines are off limits to us. Yesterday I finally broke down and asked for a prescription cough medicine for her in an effort to get her a good night of sleep. You see, when bipolar children do not sleep, it can trigger manic cycling. Add to that the fact that her grandfather passed away this weekend, and the fact that spring is in the air, well, you get the picture. It could be a recipe for disaster. I was a bit nervous about adding one more prescription medication to the mix, especially because it is a narcotic medication. But she was asleep by 7:30 last night and slept all night long without any coughing. Praise the Lord for sleep!
Today, however, I am very thankful for a good night's sleep for my girl. She has had a nagging cough the past week and it had gotten to the point that she was not sleeping at night because she was coughing all night long. Because of all the different prescription medications that she takes to manage her bipolar disorder, many over-the-counter medicines are off limits to us. Yesterday I finally broke down and asked for a prescription cough medicine for her in an effort to get her a good night of sleep. You see, when bipolar children do not sleep, it can trigger manic cycling. Add to that the fact that her grandfather passed away this weekend, and the fact that spring is in the air, well, you get the picture. It could be a recipe for disaster. I was a bit nervous about adding one more prescription medication to the mix, especially because it is a narcotic medication. But she was asleep by 7:30 last night and slept all night long without any coughing. Praise the Lord for sleep!
Monday, February 21, 2011
I Want To Move...
...to a desserted island where the influences of this sinful world can't touch my family. I want to go back to a time in life where all my kids were tucked safely into bed by 9:00 and my biggest concerns were what to make for dinner each evening. I want to live in a place where sin and death and ugliness don't exist. A place where beauty is everywhere and breathtaking. Oh wait... that would be heaven and we can't go there yet. So in the meantime, I have to live in this world and deal with the sin, death and ugliness that exists here. God, help me to see everything through Your Eternal Eyes. Give me grace to live each day with purpose. Prepare my heart for all that You have planned for us, good or bad. Protect my children from the lies and schemes of the evil one. Give them a passion and a heart for You! Amen.
Sad Goodbyes
Saying goodbye is never easy. It is especially hard to say goodbye to a loved one when you don't know if you will see them again on this earth. That is what we experienced last weekend when we took the family to say goodbye to their grandfather. It was a really hard trip to make, but one I am really glad we did. I think that it was important for the kids to have that time with their grandfather and say goodbye in their own ways.
Mary did really well the whole time we were there. She shared "her song" with her grandmother and they both sat on the couch and cried as they listened to it. She was able to give her grandfather a hug and tell him how much she loves him. I think that just being there and seeing him has helped her in many ways.
This past week has been harder on her as the reality of his upcoming death is setting in. She told me on Thursday that she is feeling very sad and angry about 98% of the time and very manic the other 2%. I think that is very accurate. She breaks into tears at the blink of an eye and her frustration tolerance is very low. Then she has these bursts of energy that are disproportionate to a situation... happy, giddy, silliness that is out of the ordinary. It is hard to gage how much of this is related to normal sadness over her grandpa and how much is cycling.
I found a picture of her sitting on our front porch, on her grandpa's lap, wrapped up in his jacket. I gave it to her last night and she loved seeing it. She remembers that day (it was a couple of years ago). It is a picture that I know she will treasure in years to come. Her biggest question right now is whether he will be her guardian angel when he gets to heaven. We told her that is probably going to be his first assignment (after he says hello to all of his loved ones already waiting for him there).
Mary did really well the whole time we were there. She shared "her song" with her grandmother and they both sat on the couch and cried as they listened to it. She was able to give her grandfather a hug and tell him how much she loves him. I think that just being there and seeing him has helped her in many ways.
This past week has been harder on her as the reality of his upcoming death is setting in. She told me on Thursday that she is feeling very sad and angry about 98% of the time and very manic the other 2%. I think that is very accurate. She breaks into tears at the blink of an eye and her frustration tolerance is very low. Then she has these bursts of energy that are disproportionate to a situation... happy, giddy, silliness that is out of the ordinary. It is hard to gage how much of this is related to normal sadness over her grandpa and how much is cycling.
I found a picture of her sitting on our front porch, on her grandpa's lap, wrapped up in his jacket. I gave it to her last night and she loved seeing it. She remembers that day (it was a couple of years ago). It is a picture that I know she will treasure in years to come. Her biggest question right now is whether he will be her guardian angel when he gets to heaven. We told her that is probably going to be his first assignment (after he says hello to all of his loved ones already waiting for him there).
Thursday, February 10, 2011
Trip Preparations
Tonight we are packing for a trip to VA to see Mark's dad. We have decided that all the kids need to see their grandfather at least one more time while he is still with us on this earth. Along with the usual things we normally pack for any trip away from home, we are also taking along an arsenal of medications just in case.
I would have to say that this week has been worse than last week as far as the cycling goes with Mary. The highs seem higher, the lows seem lower, the anger seems greater, and the time in between cycles is almost non-existent. I did call the pdoc to see if it was wise to take Mary. We all agree that she needs to have some say in how and when she says her good-byes. She has decided that she needs to see him. Unfortunately this has not helped with the cycling issues this week. The pdoc asked me if I thought that we were seeing cycling or if it was anxiety? Well, good question? Is the anxiety triggering the cylcing, is the cycling triggering the anxiety, or is it just anxiety mimic-ing the cycles? And to throw one more thing into the mix the pdoc said there could be a slight reason to believe that some of this could be caused by her thyroid being off (which can cause psychosis). Her last blood draw did not indicate that the thyroid was off, but some of the things like the agitation and the constant feeling of being tired could indicate that it might be off now. We have no way of knowing if this is the case since we still can't get her to have blood work done.
The visit in Virginia could go two ways... it could make things better since Mary tends to build up anticipatory anxiety (she builds things up in her mind until the monsters that grow out of it are far worse than the reality of the situation). Once she sees her grandpa and spends some time with him, some of this anxiety could be relieved. Or it could make things much worse. Seeing him as he is now instead of how she knows him to be could make her extremely sad. My fear is that she will be overwhelmed with sadness and ultimately this will make her suicidal again. But we will take one step at a time and not borrow trouble from tomorrow. Focus on today (or just the next hour or even the next minute) and trust that God is in control. Our motto for the weekend is "Semper Gumby" (always flexible).
Before we leave we will put together an "exit plan" with Mary so that we can all be prepared if she starts to feel overwhelmed and can get her out of that situation. We will all know what we need to do to help her through it and also to help her know that she is not alone in all of these sad feelings. We will be staying at a friend's house so that Mary will have some time to decompress every day. We are really hoping for some great visiting time with family, and we will also get to see some wonderful life-long friends while we are there. It is my prayer that we will be a blessing to those around us and not so consumed with our own troubles and exhaustion that we fail to be other's focused.
I would have to say that this week has been worse than last week as far as the cycling goes with Mary. The highs seem higher, the lows seem lower, the anger seems greater, and the time in between cycles is almost non-existent. I did call the pdoc to see if it was wise to take Mary. We all agree that she needs to have some say in how and when she says her good-byes. She has decided that she needs to see him. Unfortunately this has not helped with the cycling issues this week. The pdoc asked me if I thought that we were seeing cycling or if it was anxiety? Well, good question? Is the anxiety triggering the cylcing, is the cycling triggering the anxiety, or is it just anxiety mimic-ing the cycles? And to throw one more thing into the mix the pdoc said there could be a slight reason to believe that some of this could be caused by her thyroid being off (which can cause psychosis). Her last blood draw did not indicate that the thyroid was off, but some of the things like the agitation and the constant feeling of being tired could indicate that it might be off now. We have no way of knowing if this is the case since we still can't get her to have blood work done.
The visit in Virginia could go two ways... it could make things better since Mary tends to build up anticipatory anxiety (she builds things up in her mind until the monsters that grow out of it are far worse than the reality of the situation). Once she sees her grandpa and spends some time with him, some of this anxiety could be relieved. Or it could make things much worse. Seeing him as he is now instead of how she knows him to be could make her extremely sad. My fear is that she will be overwhelmed with sadness and ultimately this will make her suicidal again. But we will take one step at a time and not borrow trouble from tomorrow. Focus on today (or just the next hour or even the next minute) and trust that God is in control. Our motto for the weekend is "Semper Gumby" (always flexible).
Before we leave we will put together an "exit plan" with Mary so that we can all be prepared if she starts to feel overwhelmed and can get her out of that situation. We will all know what we need to do to help her through it and also to help her know that she is not alone in all of these sad feelings. We will be staying at a friend's house so that Mary will have some time to decompress every day. We are really hoping for some great visiting time with family, and we will also get to see some wonderful life-long friends while we are there. It is my prayer that we will be a blessing to those around us and not so consumed with our own troubles and exhaustion that we fail to be other's focused.
Tuesday, February 8, 2011
Tired!
That is what I am tonight, tired, physically, emotionally, mentally! Tired of the cycling, tired of the mania, tired of the anger, tired of the frustration, tired of the depression, tired of the constant flux of emotions, tired of the obsessive thoughts... Just plain tired! I am ready for some peace. I am ready for some stability. I fear that another stay at the hospital looms in our future once again. I do not know why I fear that? The doctor has not indicated that it is even remotely on the radar. Maybe it is just intuition? Maybe it is knowing the end result of the roller coaster she is on right now? Maybe it is just fear? Whatever it is, I pray that I am wrong. I pray that the medications start to work their wonders on her brain sooner rather than later. I pray that God would prepare my heart for whatever the future holds. I pray for peace. Like the old prayer goes... God grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.
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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