Tuesday, June 28, 2011
Tuesday
We are home! Things went well and we got home about 11:00 this morning. We have so much to be thankful for!
Monday, June 27, 2011
Monday
Today we were able to drive to Ames. We are both so eager to get home, but I just couldn't do it. It is frustrating to have a clear head and an unwilling body, but I know that will improve and am very thankful that my head is doing so much better!
I'm not sure why driving is so exhausting for me! However, after laying down for a couple hours, we went out for supper. That was quite a treat for me. I haven't been out to a public place for quite a long time, and I didn't wear earplugs at all in the restaurant! Both of those are huge accomplishments! My nerves (the best description I can come up with) have not settled down, though. I am still jumpy and super sensitive to things. I feel shaky yet as well. Since this happened after the February/March episode as well I was a little more prepared this time. It will improve as the days go by so I will just need to be patient with that.
I'm not sure why driving is so exhausting for me! However, after laying down for a couple hours, we went out for supper. That was quite a treat for me. I haven't been out to a public place for quite a long time, and I didn't wear earplugs at all in the restaurant! Both of those are huge accomplishments! My nerves (the best description I can come up with) have not settled down, though. I am still jumpy and super sensitive to things. I feel shaky yet as well. Since this happened after the February/March episode as well I was a little more prepared this time. It will improve as the days go by so I will just need to be patient with that.
Sunday, June 26, 2011
Sunday
We are on our way home!
This morning I woke up with a clear head yet so we decided that it is time to start the drive home. We had a wonderful day yesterday. We visited with Melanie and family (Kyle's sister) for the afternoon and then with friends Harry and Dori (who used to attend our church) in the evening. It was so nice to visit with people having a clear head! I still get tired. It seems silly but even visiting for a while becomes exhausting. But it was wonderful and encouraging! Thanks to both families for coming to visit!!
Today we were able to drive about 8 hours. We left at 8:00 a.m. My head has remained fine, for which we are thankful, but my body is exhausted. We had to stop so that I could lay down to rest. We will probably get home sometime on Tuesday.
We talked to family this morning before they left for church. Riley summed it up well when he heard me say, "Hi Riley, how are you doing?" His reply was, "Mom, you sound amazing!" I am so thankful!
This morning I woke up with a clear head yet so we decided that it is time to start the drive home. We had a wonderful day yesterday. We visited with Melanie and family (Kyle's sister) for the afternoon and then with friends Harry and Dori (who used to attend our church) in the evening. It was so nice to visit with people having a clear head! I still get tired. It seems silly but even visiting for a while becomes exhausting. But it was wonderful and encouraging! Thanks to both families for coming to visit!!
Today we were able to drive about 8 hours. We left at 8:00 a.m. My head has remained fine, for which we are thankful, but my body is exhausted. We had to stop so that I could lay down to rest. We will probably get home sometime on Tuesday.
We talked to family this morning before they left for church. Riley summed it up well when he heard me say, "Hi Riley, how are you doing?" His reply was, "Mom, you sound amazing!" I am so thankful!
Friday, June 24, 2011
Friday
We know that the Lord always answers prayers. Sometimes it is a yes, sometimes a no and sometimes an answer of not now. Today we think that we may have a yes!!
This morning starting at 6:45 this morning, I had multiple tests, including a test that including injecting radioactive fluid into the tube going into my shunt. As the neurologist did that, I was laying under something that looked like an x-ray machine but was basically recording the movement of that fluid as it drained through the shunt and into my abdomen. We then met with the final doctor who actually does specialize in pseudotumor cerebri.
The diagnosis? Over draining. The clinical exams were discussed by the doctors and they agreed that my shunt is draining too much. Today the mri and the shunt test that I described verified what they had clinically determined. The result? We can come home!! The test that was to be in the hospital was much higher risk and because the clinical exams and testing came back in agreement, they decided that the risk was not necessary!
The shunt was adjusted today to release less fluid. They would like a few follow up visits that I will describe another time.
This afternoon, Kyle and I were really flabbergasted and not sure even how to feel! Could the answer truly have been as easy as we had guessed since this episode started? If Puumala would have adjusted the shunt as we asked, the last few months could have been normal!
On the other hand, we have answers that we would not have otherwise had. The doctor here feels that I probably have been over draining since Puumala put the shunt in the summer of '09. He set it appropriately for hydrocephalus but not for what I have. The ongoing frustrations of noise sensitivity, weakness, exertion induced headaches, etc., are all symptoms of over draining. They feel that those symptoms will disappear when my shunt setting is correct, which may take another adjustment or two.
We have been very impressed with Johns Hopkins. The doctor's are thorough and kind. The nurses and others have been super nice and helpful. Such a relief!
We will be here another day to be sure that I continue feeling okay. I am feeling much better than last night!!
This morning starting at 6:45 this morning, I had multiple tests, including a test that including injecting radioactive fluid into the tube going into my shunt. As the neurologist did that, I was laying under something that looked like an x-ray machine but was basically recording the movement of that fluid as it drained through the shunt and into my abdomen. We then met with the final doctor who actually does specialize in pseudotumor cerebri.
The diagnosis? Over draining. The clinical exams were discussed by the doctors and they agreed that my shunt is draining too much. Today the mri and the shunt test that I described verified what they had clinically determined. The result? We can come home!! The test that was to be in the hospital was much higher risk and because the clinical exams and testing came back in agreement, they decided that the risk was not necessary!
The shunt was adjusted today to release less fluid. They would like a few follow up visits that I will describe another time.
This afternoon, Kyle and I were really flabbergasted and not sure even how to feel! Could the answer truly have been as easy as we had guessed since this episode started? If Puumala would have adjusted the shunt as we asked, the last few months could have been normal!
On the other hand, we have answers that we would not have otherwise had. The doctor here feels that I probably have been over draining since Puumala put the shunt in the summer of '09. He set it appropriately for hydrocephalus but not for what I have. The ongoing frustrations of noise sensitivity, weakness, exertion induced headaches, etc., are all symptoms of over draining. They feel that those symptoms will disappear when my shunt setting is correct, which may take another adjustment or two.
We have been very impressed with Johns Hopkins. The doctor's are thorough and kind. The nurses and others have been super nice and helpful. Such a relief!
We will be here another day to be sure that I continue feeling okay. I am feeling much better than last night!!
Thursday, June 23, 2011
Thursday
I am utterly exhausted and not feeling well, so this will be short and sweet.
Today was a huge day, with testing going constantly until late afternoon. We were impressed with the doctor's and they are being very thorough.
Tomorrow after an mri, they will probably adjust my shunt to stop draining and see what happens. It was mentioned that perhaps I am in remission and the shunt is no longer needed. We will find out fairly quickly. We learned some new things about the shunt I have that I will share later. The consensus seems to be that I am overdraining for one reason or another, but that may be verified next week. Right now it is still just guesses.
Today was a huge day, with testing going constantly until late afternoon. We were impressed with the doctor's and they are being very thorough.
Tomorrow after an mri, they will probably adjust my shunt to stop draining and see what happens. It was mentioned that perhaps I am in remission and the shunt is no longer needed. We will find out fairly quickly. We learned some new things about the shunt I have that I will share later. The consensus seems to be that I am overdraining for one reason or another, but that may be verified next week. Right now it is still just guesses.
Wednesday, June 22, 2011
Wednesday
We made it! We left again at 7:00 eastern time and arrived early afternoon. Today was not as good as the previous days. Still very doable to me, but my head hurt more and I just didn't feel as well. We didn't stop much at all in hopes of getting to our room before the shot wore off. It is beautiful out here, though. It would be fun to drive out here with the family and do some sightseeing. I would much rather do that then visit doctors and hospitals!!
Kyle is out now walking around and figuring out where things are. Two of our appointments tomorrow are at a different campus and he is trying to figure out how to use the shuttle bus so that he doesn't have to fight the morning commuter traffic to get me there. I think Friday's appointments are there, too, and the first is at 7:00 a.m. However, the hospital is very close and that is where I will spend the most time, so that should work out OK. I have been spending most of the time that we have been here just laying down.
We are staying at the Hackerman-Patz Pavilion in a suite. It has a small sitting room with a love seat and a recliner. There is a small table that we can eat at and a kitchenette with a microwave, refrigerator and a few cupboards. The bedroom is in the back and there is a nice sized bathroom. There is a really nice family room and kitchen on each floor, and the kitchen has all of the utensils and stove, oven, mixer, blender and toaster for our use. Very nice. I think Kyle may go get a few groceries tomorrow afternoon so that we can eat simple meals right here. This facility also has apartments that we could rent that have their own kitchens but we felt that the smaller option was perfect for us.
We are so thankful for your prayers! We are opening a few cards a day just to spread it out and have encouragement each day. We will probably save more of them to open in the hospital since that is the time I will probably not like as much. Of course, once they are all read, we will start reading through them again. Thank you again for such encouragement!
Kyle is out now walking around and figuring out where things are. Two of our appointments tomorrow are at a different campus and he is trying to figure out how to use the shuttle bus so that he doesn't have to fight the morning commuter traffic to get me there. I think Friday's appointments are there, too, and the first is at 7:00 a.m. However, the hospital is very close and that is where I will spend the most time, so that should work out OK. I have been spending most of the time that we have been here just laying down.
We are staying at the Hackerman-Patz Pavilion in a suite. It has a small sitting room with a love seat and a recliner. There is a small table that we can eat at and a kitchenette with a microwave, refrigerator and a few cupboards. The bedroom is in the back and there is a nice sized bathroom. There is a really nice family room and kitchen on each floor, and the kitchen has all of the utensils and stove, oven, mixer, blender and toaster for our use. Very nice. I think Kyle may go get a few groceries tomorrow afternoon so that we can eat simple meals right here. This facility also has apartments that we could rent that have their own kitchens but we felt that the smaller option was perfect for us.
We are so thankful for your prayers! We are opening a few cards a day just to spread it out and have encouragement each day. We will probably save more of them to open in the hospital since that is the time I will probably not like as much. Of course, once they are all read, we will start reading through them again. Thank you again for such encouragement!
Tuesday, June 21, 2011
Tuesday
We made it to Columbus, Ohio today. It was approximately 7 hours of driving again. Today I did really well again until the last hour. After that I was pretty worn out and didn't feel as well. Kyle just picks up supper and brings it to the room. Last night we went to sleep around 8:00 and were up at 6 and on the road by 7:00. We hope to do the same again tomorrow and hope to arrive in Baltimore by early afternoon.
We will be staying at the Hackerman-Patz Pavillion right on the Johns Hopkins campus so we won't have to worry about driving around. Kyle brought my wheelchair along, so he will probably push me around to the various appointments and not worry about driving in the traffic.
We continue to pray that we find answers and some relief at JH.
We will be staying at the Hackerman-Patz Pavillion right on the Johns Hopkins campus so we won't have to worry about driving around. Kyle brought my wheelchair along, so he will probably push me around to the various appointments and not worry about driving in the traffic.
We continue to pray that we find answers and some relief at JH.
Monday, June 20, 2011
Monday
A big day today! We started off by saying a difficult good-bye to our kids. Then off to rv for blood tests at 8:00. My veins, as usual, didn't cooperate so that took a bit of time. Then we stopped and had a quick breakfast with my parents and we were off!
We made it to Galesburg, Illinois today. I took a toradol shot right before we left and it helped a lot but it was clear when it began wearing off. By the time we got here I was pretty wiped. Another 7 hour day tomorrow and we will be 2/3 of the way there.
We were amazed, surprised and shed a few tears by the surprise many of you participated in. My parents had a large bag full of cards, letters and goodies as a care package. We were both quite overwhelmed. Mom said that there are more cards on the way. Wow!!! We are opening just a few at a time. I think we will savor each one and spread them out so there is something new to look at each day. Thank you so much! It means a lot to both of us that so many care! I think mom said that there are more than 70 cards! Thank you, thank you!
We made it to Galesburg, Illinois today. I took a toradol shot right before we left and it helped a lot but it was clear when it began wearing off. By the time we got here I was pretty wiped. Another 7 hour day tomorrow and we will be 2/3 of the way there.
We were amazed, surprised and shed a few tears by the surprise many of you participated in. My parents had a large bag full of cards, letters and goodies as a care package. We were both quite overwhelmed. Mom said that there are more cards on the way. Wow!!! We are opening just a few at a time. I think we will savor each one and spread them out so there is something new to look at each day. Thank you so much! It means a lot to both of us that so many care! I think mom said that there are more than 70 cards! Thank you, thank you!
Sunday, June 19, 2011
Sabbath
This is the day the Lord has made! Let us rejoice and be glad in it!
My younger kids so badly wanted me to be able to go to church this morning with them, knowing that I am leaving tomorrow. I long for the day that I can worship with them on Sunday!
I have much to be thankful for. Loving family (I am blessed to have loving family on both my side and Kyle's!), healthy kids. As I prepare to leave, I am focusing on them, knowing that God's plan is best for all of our lives.
Kyle and I are thankful that Tami has decided to stay at home with our younger two kids this week. Staying in our home is making things a little easier for them to deal with our leaving. We plan to take our computer and someone will update the blog regularly.
Have a blessed Lord's Day!
My younger kids so badly wanted me to be able to go to church this morning with them, knowing that I am leaving tomorrow. I long for the day that I can worship with them on Sunday!
I have much to be thankful for. Loving family (I am blessed to have loving family on both my side and Kyle's!), healthy kids. As I prepare to leave, I am focusing on them, knowing that God's plan is best for all of our lives.
Kyle and I are thankful that Tami has decided to stay at home with our younger two kids this week. Staying in our home is making things a little easier for them to deal with our leaving. We plan to take our computer and someone will update the blog regularly.
Have a blessed Lord's Day!
Friday, June 17, 2011
Friday
The days are ticking down. We head to RV for blood tests first thing and then off we go. We hope to travel 7 hours a day and will probably leave fairly early in the morning because that is my best time of the day. Traveling is not easy for me so this trip could be interesting. But we will be there in time for my first appointment Thursday morning.
Things are coming together for our kids, although it isn't easy. The younger two are having a hard time with knowing that we are going to be gone at least two weeks. They have struggled quite a bit with all of this. It would be such a relief to our family for me to have relatively stable health that allows me to participate in their activities. We continue to pray for the Lord's blessing on this trip and for peace in accepting the answer the Lord gives us, no matter what that answer is.
Philipians 4: 7 And the peace of God, which passeth all understanding, shall guard your hearts and your thoughts in Christ Jesus.
Things are coming together for our kids, although it isn't easy. The younger two are having a hard time with knowing that we are going to be gone at least two weeks. They have struggled quite a bit with all of this. It would be such a relief to our family for me to have relatively stable health that allows me to participate in their activities. We continue to pray for the Lord's blessing on this trip and for peace in accepting the answer the Lord gives us, no matter what that answer is.
Philipians 4: 7 And the peace of God, which passeth all understanding, shall guard your hearts and your thoughts in Christ Jesus.
Wednesday, June 15, 2011
Wednesday
I don't like to be right when predicting a bad day, but I was pretty accurate yesterday. By noon I felt pretty miserable so Kyle gave me a shot. That helps make it more tolerable, and I laid down several hours as well. Thankfully, today is starting out much better!
Tuesday, June 14, 2011
Tuesday
Yesterday was another better than average day! I took advantage of it by going to the office and having lunch with the ladies and Kyle in the back room. Very nice! :) I went to a doctor appointment in rv to get my medications in order for our trip and then visited with Dad & Mom for a bit. Definitely overdid it and didn't feel so good last night. Unfortunately, this morning is not so good and I suspect that it is going to be one of my rougher days. I guess I can't have better days every day!
We are counting down the days now and are praying there will be some relief at the end of this journey.
We are counting down the days now and are praying there will be some relief at the end of this journey.
Saturday, June 11, 2011
Saturday
Another better than usual day. I wish I could figure out what causes the better days and what causes the days that are worse. It seems so unpredictable!
Today we took advantage of me doing a little better. Our family usually likes to celebrate our sisters and parents birthdays by getting together for lunch sometime around the birthday. Today we ordered food and ate it in our backyard which allowed me to participate. It was so nice to have them to visit with. I knew they were going to do this today but it was an unexpected change to have it as take out and in our yard. I can handle the noise better of people talking when it isn't in a room, I suppose because there isn't the echoing. I sat with my back to the sun which helped and my sunglasses helped with the brightness. Just a delightful day! I get so lonely sometimes so that was a nice change.
Karleen has all the kids except Tanner starting today until Thursday to help me. It does make it easier for me but yet it is hard for me to know that I don't have them with me. What a quandary, but just the way it is.
Today we took advantage of me doing a little better. Our family usually likes to celebrate our sisters and parents birthdays by getting together for lunch sometime around the birthday. Today we ordered food and ate it in our backyard which allowed me to participate. It was so nice to have them to visit with. I knew they were going to do this today but it was an unexpected change to have it as take out and in our yard. I can handle the noise better of people talking when it isn't in a room, I suppose because there isn't the echoing. I sat with my back to the sun which helped and my sunglasses helped with the brightness. Just a delightful day! I get so lonely sometimes so that was a nice change.
Karleen has all the kids except Tanner starting today until Thursday to help me. It does make it easier for me but yet it is hard for me to know that I don't have them with me. What a quandary, but just the way it is.
Thursday, June 9, 2011
Pictures of trip & Kylie's Graduation
Okay, I am totally computer illiterate! I was going to label the pictures, but I did something wrong so it didn't work. The first picture is in the Black Hills when Kyle and the kids took our family vacation. Tanner had fun taking graduation pictures, except the one he is in. :) The graduation pictures were taken after the graduation. I did ok, particularly since I had pain meds to get me through. What a blessing to be able to see our daughter graduate from 8th grade! She was so excited!
Today so far I am feeling a little better then usual. It seems like the plans are coming together for our trip to Baltimore, although I have had little to do with it. I think Kyle and Renae have been busy with that.
Tuesday, June 7, 2011
Tuesday
I continue to do about the same. Things are a little more challenging with the kids around, but Kylie has been doing a good job of keeping them busy a good part of the time. It is really hard, because the want to talk to me and spend time with me and I can do that but not very long. We continue to work on having them speak in a quiet voice but hard for kids to remember. My ability to handle noise and movement around me seems to slowly get worse.
My mind is not so sharp right now so I am having some problems remembering things and putting things together. If you are interested in helping in some way, it is probably best to ask Kyle rather than me.
My mind is not so sharp right now so I am having some problems remembering things and putting things together. If you are interested in helping in some way, it is probably best to ask Kyle rather than me.
Sunday, June 5, 2011
Psalm 40:17
As for me, I am poor and needy,
but the Lord takes thought for me.
You are my help and my deliverer,
do not delay, O my God!
Psalm 42:5
Why are you cast down, O my soul,
and why are you in turmoil within me?
Hope in God; for I shall again praise him,
my salvation and my God.
but the Lord takes thought for me.
You are my help and my deliverer,
do not delay, O my God!
Psalm 42:5
Why are you cast down, O my soul,
and why are you in turmoil within me?
Hope in God; for I shall again praise him,
my salvation and my God.
Saturday, June 4, 2011
Saturday
My family will be coming home today. I have talked to each of them on the phone twice a day which I enjoy. It makes it feel like I am a little more a part of what they are doing and enjoying. They are having a great time and I am so thankful! I am praying for a safe journey back.
I continue to do about the same. Yesterday my sister picked me up and took me to her house for a while and we enjoyed a pizza together. It felt really good to get out of my house and drive around a bit. I was ready to get home by the time I got here and rested for a while but the break was great!
I continue to do about the same. Yesterday my sister picked me up and took me to her house for a while and we enjoyed a pizza together. It felt really good to get out of my house and drive around a bit. I was ready to get home by the time I got here and rested for a while but the break was great!
Friday, June 3, 2011
Friday
Kyle and the kids are having a great time in the Black Hills. I am very thankful for that.
I can tell that my body is gradually declining. That seems like a strong word to use, but I don't know how else to describe it. I had started to shake/tremble a bit ago in the evening and now I am noticing that it is starting already in the morning and becoming more bothersome to me. It isn't always a visible trembling but I feel like I am trembling inside. Sounds strange but I don't know how else to describe it. I am becoming less able to handle noise and movement.
I have been asked what I do all day. I can't watch tv except maybe a couple minutes of news if the volume is down and I shut my eyes through the portions that have movement. I also keep the radio off. I read books off and on through the day. I spend a little time off and on putting pictures in a photo album and I lay down a lot and sit in "my" chair a lot. I don't sleep during the day because it seems that the only times that I sleep are when I taking a sleeping pill at night. I wake up pretty early because the sleeping pill wears off. I enjoy having a visitor now and then unless I am having a bad day but I can't talk so very long. I am finding that if I talk for to long my head gets worse. That is about it besides writing on this blog now and then!
I can tell that my body is gradually declining. That seems like a strong word to use, but I don't know how else to describe it. I had started to shake/tremble a bit ago in the evening and now I am noticing that it is starting already in the morning and becoming more bothersome to me. It isn't always a visible trembling but I feel like I am trembling inside. Sounds strange but I don't know how else to describe it. I am becoming less able to handle noise and movement.
I have been asked what I do all day. I can't watch tv except maybe a couple minutes of news if the volume is down and I shut my eyes through the portions that have movement. I also keep the radio off. I read books off and on through the day. I spend a little time off and on putting pictures in a photo album and I lay down a lot and sit in "my" chair a lot. I don't sleep during the day because it seems that the only times that I sleep are when I taking a sleeping pill at night. I wake up pretty early because the sleeping pill wears off. I enjoy having a visitor now and then unless I am having a bad day but I can't talk so very long. I am finding that if I talk for to long my head gets worse. That is about it besides writing on this blog now and then!
Wednesday, June 1, 2011
Wednesday
Well, my family is off and already in Rapid City. They are having a great time already. I am thankful that they can relax and enjoy this time together without having to worry about being quiet or if mom will be able to keep up or be too tired, etc. The younger two particularly have expressed that it doesn't seem like a "family" vacation with me missing, but I really believe that this is for the best.
Today has been a rougher day for whatever reason. I tried to hold out but finally gave in and asked my niece Bethany to give me a shot. She did and it has helped quite a bit. I really wish that I could just fast forward the time and get to the doctor! I am praying that they will have answers but as this wears on I become more and more concerned that we may not ever get an answer or find relief. The Lord is in control and He knows the answer and I need to rest in that.
Today has been a rougher day for whatever reason. I tried to hold out but finally gave in and asked my niece Bethany to give me a shot. She did and it has helped quite a bit. I really wish that I could just fast forward the time and get to the doctor! I am praying that they will have answers but as this wears on I become more and more concerned that we may not ever get an answer or find relief. The Lord is in control and He knows the answer and I need to rest in that.
Subscribe to:
Posts (Atom)