Friday

I am thankful to say that I can see that I am making improvements overall.  Although I have a long ways to go, my strength is improving!  Tonight I went to WalMart for the first time in a few months.  Not a big deal for most, but a pretty big step for me since it has been maybe 2 months or so since I have really been in any store.  I just stayed in one section but had the opportunity to visit with a few people which was fun.  :)

My head is staying about the same, which is better than it had been for quite a while.  I am going to give it some time, but I believe that it may need to be adjusted a little bit.  We'll see how that all shakes out.  Contrary to my prior experience, I am now waking up with a little more of a headache and feel better after being for a while.  I had been feeling much better when I woke up which leads me to believe that my pressure is probably just a little high.  I still have a headache all the time but it is much more tolerable and I am told that my eyes look "clear" again.  :)

Wednesday

I have decided that I am often overly optimistic about how I am going to do.  This week has been a reality check again.  Although my head is feeling pretty good my body is just not following along.  For some reason I thought I would just get home and get back at it.  Not happening.  Monday was the worst day where I just felt lousy.  Since, I am feeling better but just not able to do much at all.  I need to remind myself that I just:
1. Had a shunt patecy test
2. Had a four day spinal tap
3. Spent 9 or 10 days (I can't remember) in the hospital
4. Had a surgery
5. Had another spinal tap
6. Had another surgery
7. Flew home
8. Have four children with two that are needy after missing mom for 3 weeks.
9. Went into all of this not doing so well.

So I am overwhelmed and just trying to figure out how to get stronger and deal with normal life again.  It will come.  I've done it before (how many times?). Tami so graciously took my younger two kids today for a while to play with Kayden.  It is always such a struggle at this point wanting to be with the kids and spend time with them and just having a hard time handling it all.  It is always a balancing act that I don't seem to handle so well.

Monday

A more difficult day today.  It seems that I often have some residual challenges after a surgery and they hit today.  Kyle left most of the day with the kids to give me quiet time to rest and get on top of things.  I think I really needed the rest after a big day of travel on Christmas and the excitement of seeing Kyle and the kids.  So it was a restful day that will end very early.  Thankfully I am feeling a bit better this evening.  My incision is still sore but I have stopped taking pain meds today.  The side effects just aren't worth it and the pain compared to my headaches is a walk in the park!

I am so thankful to be home!!

Christmas Day

We are home!  My head is clear!  We have so much to be thankful for!

Although my head is not hurting, I am having the usual sensitivities.  It will take some time to calm everything down.  I may need to take some type of medication to try to settle everything down.  The doctors said that since my head has had so much pain for so long, the lining of my brain is most likely very irritated.  So we will explore some medication options to see if that will gradually decrease. 

For now, I am rejoicing be home with my family.  Have a blessed Christmas!

Saturday, Christmas Eve

Praise the Lord!  I am out of the hospital!  Even better news is that we fly home tomorrow!  I called the airline hoping to get out sometime this week and the flights were available and reasonably priced.  That is a huge answer to prayer! 

Another praise is that I am feeling very well!  We were planning to stay for a few more days to verify that the shunt is at the right setting now that I have the anti-siphoning device installed.  However, we wouldn't be able to find out until Tuesday when I would even be able to make an appointment.  I am doing very well and their best guess was the setting I am at now, so we are just going to go for it. 

It would have been three weeks on Tuesday that we arrived.  A much longer, more extensive and expensive trip than we ever anticipated but it does seem as though we have many more answers.  Am I healed?  Only the Lord knows.  The battle is not over but I think that we have made a lot of progress.  As the neurosurgeon reminded me, the average life of a shunt is 2 years.  Since things are working well right now, they didn't want to touch any more then necessary to add the additional device.  But that also means that my shunt is now 3 years old.  I am not going to think about another surgery right now, though.  Three in 2011 is more then plenty!

So, we didn't think we would be home for Christmas.  Now we will be home for part of it!  We have so much to be thankful for!  :)

Friday 12/23/11

The surgery is done and all went well. We've been praying that all will be well, no headaches. She should be back at our apartment tomorrow morning and out of the hospital - and she can't wait to get out of there!

Now it is wait and see how she is the next couple of days, if her headache is gone the shunt is at the right setting and if she still has a headache, it might need to be adjusted. So we're not quite sure what to do about scheduling tickets yet.  Let's just hope and pray this will be the end for long time, we can get home and life for all will be back to normal.

Since she will be back in the morning, I'll let her write more later.

Thanks again for all your thoughts and prayers and have a very blessed Christmas!
Kathy

Thursday 12/22/11

Another day in Baltimore.  It sometimes seems like we are never going to get home, but next year at this time, this will just be a memory.  We also know that Christmas is just a day that can be celebrated on another day.  We really don't know if Jesus was born on December 25 and more likely that He wasn't.  We can also celebrate another day.  For me it isn't so important, but for Cindy and the kids a little more so, and we've talked about that, we'll just celebrate Jesus birth with our family when we get home.

The Dr came to Cindy again early this morning and told her they were going to try and do the surgery today.  After waiting until about 4:00, the Dr came and said it will now be tomorrow around 11:15.  She didn't have any food all day and then when it came it was something she couldn't eat.  Needless to say, with all the disappointments, later dates, and 5 1/2 years of so many health issues, it was meltdown time tonite.  Also, when her spinal pressure isn't good, she can't sleep at night and needs a sleeping pill that the dr on the floor wouldn't give her the last 2 nights.  The neurosurgeon ordered it now so she should get a good night's sleep.  She is so anxious to get out of the hospital and go home and be "normal".

We are still at the best place for Cindy, the drs are all so good, as well as the nurses and everyone else we have been working with.  We just need to keep remembering that and they are doing their best to help her, and we know too that this is in God's hands, not ours, and we have to keep our trust in Him and that He will continue to give wisdom and guidance to the drs.

After hugs and hopefully some reassuring words, tomorrow will be a better day.  Moms out there please always remember that once you are a mom, you are always a mom, no matter how old your children are, you need to be there for them.  I see all these parents here at the place I'm staying at, here for their adult children also. 

Our Father in heaven is always here for us, and we always need to remember that and always turn our prayers to Him in Thanksgiving and ask for help and comfort also.

Thanks for all your prayers for us, although we know your thoughts are with us, and God is always with us, we do get a little lonely being so far from home.

Kathy

Wednesday 12/21/11

Today is our oldest grandson Craig's 18th birthday.  It is pretty hard to believe we could have a grandson that age already and our 15th coming in March.

Cindy had a visit from the dr early this morning and he told her they decided against the surgery, they wanted to observe her today and let her go tomorrow.  About mid morning the high pressure headache started to return again and is gradually getting worse now that the shunt is not draining at all.  The nurses consulted with the dr and he came back this afternoon to check on her. He called Cindy's neurosurgeon who is on vacation and within 15 minutes we heard back that the surgery is on again. We were so hoping that she wouldn't need the shunts anymore. So she will have one more quiet day in the hospital before surgery Friday.  She is in an end room that is very quiet, so we've just been spending time together and playing a couple games when she's up to it and going for walks down the halls. A friend called her today which she appreciated so much!

I am still staying at a place that is for family of adult patients who usually have cancer, but others are here too.  It has been such a blessing to be able to stay here since it is so close and I can go back and forth, maybe about 1/2 mile or a little less between us so I'm getting alot of walking in.  Since so many people are here sometimes for months, groups come in a couple times a week or more and bring in supper for everyone here.  It is so nice to have such good food and a good way to meet the others when everyone is away from their homes and families and so wonderful that people take their time to be so kind to others.  It is such a blessing to have good health, there are so many suffering and going through so many treatments that are so difficult.

There verses are in our Job Bible study and are just very helpful for us and others that are going through difficult times.

"Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God."  II Corinthians  1: 3-4

Thanks for your prayers,
Kathy

Tuesday 12/20/11

Cindy had her spinal tap this afternoon.  The needle wasn't as big but didn't go quite as well either, he hit bone the first time and had to go back in again. The highest they want the pressure to be is 20 and her's was 24, so he drained  out a couple vials of fluid to lower the pressure. He had her move into a couple different positions to make sure the reading was accurate, although she still was laying on her left side, just had her move her legs in different positions.  She does have to have another surgery for the anti siphoning device insertion and it isn't scheduled until Friday at noon.  Cindy has to spend the rest of the week in the hospital so they can monitor her becuase of the high pressure now, although she was feeling OK yet before the spinal tap.  Needless to say, we are a little discouraged again, and Cindy more so.  The earliest she can get out of the hosp is Saturday, and the drs want to make sure she is OK before she travels,  so we won't be home for Christmas.  We are now hoping that Monday will work, but the dr didn't want us to schedule any tickets yet.

I am still just very thankful we are here and they know what they are doing and can help her.  Hopefully her recovery will be the best Christmas present yet!!!

Kathy

Monday 12/19/11

Surgery went very well today, the shunt is now unable to drain any spinal fluid.  Tomorrow is the spinal tap and that test will tell the story.  The dr came in this afternoon, and Cindy isn't looking forward to the spinal tap at all, which he knows.  He told her instead of using the harpoon he did last week, he'll just use a small needle this time.  But I've been with her several times when she's had this procedure done and those needles are never very small, but last week's was pretty large!

We are so praying that this test will show within the normal range.  That would mean her body is no longer making too much spinal fluid and she wouldn't need the shunts anymore. Although they wouldn't be removing them yet, it would be great to not have to deal with them anymore and  they can be removed at some later date.  If the test shows elevated pressure, Cindy would need to have one more small surgery to get the anti-siphoning device put in and open up the shunt tube again.  Also, if the test is normal, we can come home if we can find any availability on any airlines and we are anxious to get home!!

I do need to say that our experience here has been so very positive.  Everyone has been kind from the people in the hotels to all the nurses and everyone at the hospital.  The drs here deal with issues like Cindy's every day so they aren't afraid of working with her, and they will get her better any way they can. 

Please pray for good test results tomorrow!
Thanks again so much for all your thoughts and prayers,
Kathy

Sunday

Tomorrow is the day.  I have surgery at 12:30.  We anticipate that it will be short and easy for me with only one night in the hospital.  Today has been a good day--perhaps the best that I have had for some time.  I am appreciating this good day but have learned not to plan or expect that the same will be true for tomorrow.  I did not attend church today again because the noise level is so difficult to control in an unfamiliar place where I don't know where to go to get away from it if necessary.  It is hard to miss the communion with the saints.

We are thankful again for Harry and Dori for inviting us into their home again this weekend.  What a blessing to have a distraction from the heaviness of this journey.  They were wonderful hosts and made us feel so comfortable and cared for.

Mom and I were talking tonight again about how difficult this journey is.  Chronic illness is an exhausting and lonely walk.  I am learning to be more compassionate toward others that may experience an ongoing illness.  I know that I have written about this before but it is hitting me a little harder being away and feeling so isolated.  I know that I haven't been to many or most of the activities at church and school so I don't see people and talk to people and create or maintain relationships that ordinarily would happen.  When I am somewhere, I often rush in and out immediately before and after because the noise and activity is more than I can handle. But it seems to isolate me and cut me off from others and that isolation can be nearly as difficult as the illness itself.  I would like to have those relationships and friendships and it has been hard seeing those disappear.  The longer this goes on, the more I think it becomes normal to others and so I am not missed or expected.  I am not writing this to whine or complain but just to state a reality that I have found as I continue dealing with this.  Five and half years have passed and a lot has changed.  My faith is stronger and the Lord has blessed me in immeasurable ways.  I wouldn't have chosen this path, but I know that it is the best for me.  That doesn't make it easy, though. 

Tonight is my younger kids' Christmas program at church.  Riley told me a couple nights ago that my being gone so long is really hard for him and Tara and that he really didn't want me to miss their program.  They are sad and I am, too.  This isn't just one program, but countless activities and programs over the years.  It accumulates and it hurts them and I.  This whole thing is just hard. 

Hopefully my mom will have a moment to post tomorrow evening regarding the surgery.

Friday

I am back out of the hospital.  Although we are quite disappointed that the surgery didn't happen this morning, it is very nice to be out of the hospital.  I really don't like days spent there but I am thankful for the progress that is being made.

The procedure on Monday is to ligate the shunt, or in other words tie off the tube so that it can't drain.  We are trying to determine if I no longer need the shunt or if I do.  On Tuesday afternoon, a spinal tap will be done to see if my pressure shoots up.  If it does, we then know that I will need to have a second surgery to add the anti-siphoning device.  (The neurosurgeon here puts this device in with every shunt he places so this is not unusual)  We hope that I would have that surgery done yet while we are here, and it would be considered an emergency surgery so they would fit us in fairly quickly.  We had the option of doing the anti-siphoning device first and living with it that way for a period of time but ultimately we decided that it would be best to try to get to the bottom of this now.  If the shunt can be removed, we will know it and will have to schedule a surgery in the future to actually remove the whole thing but there will be no urgency.  If we did the anti-siphoning device first it would be more difficult to know if that is the final answer.  It would be such a blessing to be done with the shunts and close this long chapter in my life, but we will know that better next week.

The bad news for me is that I have to have another spinal tap on Tuesday and I really dread those.  I haven't decided yet if I dislike the ng tube or the spinal tap more but they are both on the bottom of my list of things I would choose to do!

We are praying that we will be home for Christmas, but it is clear that there are no guarantees.  I am lonely for my family and it is really hard to be this far away at this time of the year.  However, it is such a blessing having my mom here and to have a few friends in the area that have been so generous to us.  The Lord has been good to us.  This has been a difficult trial again but we will continue to trust in Him and take things one day at a time.

Thursday

We had so hoped and prayed that Cindy's little surgery would maybe even be possibly today, but they came in this afternoon and said it now won't be until Monday at noon.  Even though everything has really gone well here, that was a little harder to hear.  Because it is getting closer to Christmas, Cindy's neurosurgeon left for vacation this past Wednesday, so he arranged to have a colleage do this and he couldn't fit it in his schedule until then.  On Tuesday she will need another spinal tap, which she dreads almost more than any other procedure and said a couple weeks ago she would never have another one.  If the pressure shows normal on Tuesday we could possibly fly out on Wednesday.  If the pressure is too high, Cindy will have to have another minor surgery, when they can schedule it, to put in an anti siphoning device.  The dr said that they could maybe schedule this one a little quicker because she can't have the high pressure for too long.

Even though we are disappointed about having to stay here longer, it has still been such a blessing to be able to be here with all these doctors that deal with the issues that Cindy has.  They come and spend time in the room with us and talk, sometimes up to an hour at a time, about what is going on, explaining everything, and just being kind.  Cindy told me today that the Johns Hopkins neurology dept is rated #1 in the U.S. so she is in the right place.  We pray that God will give her the healing that she so badly wants.

Cindy left the hospital this evening so we are both at our little apartment now.  She will need a blood test tomorrow before the surgery on Monday.

Tonite we had visitors at our "home" and they brought us some very delicious  food.  Thanks so much Bethany, Austin and family!!

Thanks again for all your concern and prayers, it really helps to know that there are people thinking about us and praying for us!

Kathy

Wednesday night

I just got back from the hospital and it's late, so I'll just write a short note.

The dr pulled the tube out tonite that was monitoring Cindy's spinal fluid pressure at about 8:15 pm, he's pretty dedicated!!  Before that, both the neurologist and neurosurgeon were in her room for a while discussing options and there were several.  One of the biggest problems right now is the timing with the holidays coming and their vacations and the weekend.  What the plan is now if the drs can get an operating room is to tie off Cindy's shunt tube by her collarbone area hopefully by Friday, tomorrow would be too soon to schedule. Then it is wait and see what her reaction to it would be.  If  the pressure goes up they could do another spinal tap Sat or Sun to relieve the pressure and go in Monday hopefully for the anti siphoning device which stops or slows down the gravity pull on the fluid, which causes overflowing when she is sitting or standing up.  I will send a note tomorrow when we find out what is going to happen.

Wednesday

Our prayer continues to be that our Lord gives the drs the wisdom to know what Cindy's body needs for healing.

Yesterday, Dr Solomon spent at least an hour in Cindy's room with us going over the last 24 hrs of the test results so far, answering questions and just explaining all that they are doing.   Another nice thing is that he does speak fluent english, the only dr she has seen here so far that does so it is easy to understand him.  The other drs are very good, but we have to listen very closely and sometimes need things repeated.  He did adjust the shunt to release less fluid, the highest setting she has had so far.  The strange thing though was the numbers went in the opposite direction from what they should have.  The dr was aware of this and was going to access and monitor the computer where the scan is from his home.  We are hoping and praying for some answers today.  Dr Solomon, the neurologist is also consulting with the neurosurgeon to see which direction they should take with results of the tests they have received so far.  Each dr we have seen have all remarked on what a complicated case Cindy's is.  I think so far the drs have asked her to be in 3 separate clinical studies which hopefully means they will continue to work with her to find all the answers they need for her and others.  Cindy's spinal tap area has sprung a leak which they are watching.  It is all sealed with their plastic bandaging so hopefully there will be no complications there. She does have to remain in the hospital  for a day after they remove the tube out of her spinal cord for safety reasons, which we are thankful for.  They want to make sure she doesn't develop an infection.

Yesterday I moved from a hotel which was about 15 minutes from here to a place similar to a Ronald McDonald house on the John Hopkins campus, a couple blocks now from where Cindy is. I can walk to the hosp during the day, but need a security escort or a shuttle after dark.  It's very different here from small town Iowa!!!

We've been doing a study on Job with our Bible Study at church, such a GOOD Bible Study also.  Last night I found this verse which I thought so appropriate for us right now.

Fear thou not; for I am with thee:  be not dismayed; for I am thy God:  I will strengthen thee; I will help thee; I will uphold thee with the right hand of my rightousness.  Isaiah 40: 10 kjv

Please continue to keep us in your prayers!
Kathy

Monday, in the hospital

Cindy and I got to the hospital safely this morning after a very nice weekend with Dori and family and the delicious food and hosptitality their family gave us. Thanks so much!!  Cindy didn't have the spinal tap until this afternoon and it was a bigger procedure than her previous ones.  They had to run a small plastic tube through the needle into her spinal cord which the dr did right in the room but under very sterile conditions.  The tube is hooked up to a machine that is monitoring her spinal fluid pressure so Cindy has to call the nurse anytime she needs or wants to sit up or get up for a period of time to keep the reading accurate.  The spinal tap is a painful and very uncomfortable procedure, which she really dreaded going through again, but the dr did a good job and it did go well. She can feel the tube in her spinal cord,  it's uncomfortable but not too bad.  She's just very thankful it's done. 

We are so hoping and praying for answers this time.  The drs have all been very kind and helpful and also seem to want to find answers for her too.  We spent quite a bit of time talking to them and both them and us asking lots of questions.  Her main neurologist's name this time is Dr Solomon, which we thought was interesting.  We are hoping that God will give him the wisdom to find healing for Cindy.  We know that God knows all things and knows what Cindy's problem is, and are just praying that God will give Dr Solomon and the other drs the answers and Cindy will be able to once again live a normal life.

Thanks so much for all thoughts and your prayers!!

Kathy

Sabbath

My mom and Dori's family have all headed out to church.  I am having a better day today so far, but since the noise level at church is hard to predict and it is sometimes difficult to find a quiet place  I have decided it is best for me to stay put.

Things have gone well since I have been in Maryland.  The headache has been constant and variable but for the most part manageable.  Thankfully I have not needed a shot since I have been here (although my mom is prepared)  I wondered how I would wake up this morning since Sunday seems to be the day that it can be significantly worse, but that hasn't happened today, for which I am thankful.

Tomorrow is the big day.  It has taken me a few days to work through all of this again.  I was prepared for surgery but not mentally prepared for this test and several days in a hospital.  Although this is the best step, I know that it may provide the answer that we need for healing and it may not.  If they determine that the headache is not due to the shunt I fear getting to the end of the opportunities and then trying to find a way to live this way.  It could be a lonely existence.  So I am not letting myself go there, except here on the blog, until I actually find out what I have to face.  The Lord gives me the strength for today and I don't need the strength for tomorrow yet.  He will give me strength for each day in the hospital as well, which I will need.  I so despise hospital stays!

On the positive side, our older two kids called me yesterday.  They decided to do some Christmas baking without me.  I am so glad!  That is something that we have enjoyed doing over the years and it was encouraging to hear about them baking our traditional favorites and having the younger two help with frosting and decorating.  What a blessing to have such great kids!  I am missing more Christmas parties, programs and activities but again am thankful for what I have been able to attend.

Proverbs 3:5-6:
Trust in the Lord with all your heart,
and do not lean on your own understanding.
In all your ways acknowledge Him,
and He will make straight your paths.

Thursday

I saw the neurosurgeon this morning.  The test yesterday did not give clear direction.  The shunt is draining and it seemed to be working at a fairly normal rate which challenges their idea that the shunt is overdraining.  At one time they had hoped that I would no longer need the shunt and we would gradually work toward getting rid of it, but that doesn't seem to be the case.  However, there is also not a clear reason why I am struggling with my headaches again, either.

After telling me that my case is very complicated--not something I liked to hear from Johns Hopkins--they decided to do the in hospital spinal fluid monitoring test.  Never say never, because I said just a short time ago that I wouldn't do another spinal tap and now I will essentially be doing one for four or five days.  Not looking forward to that, but really hoping that this will give direction to the doctor.  Normally it takes 6-8 weeks to get this test scheduled, but thankfully their is an opening on Monday so we will be staying for the week and after the test they will determine what to do next. 

A friend (who used to live in our town) that lives near Baltimore has invited us to stay with her starting tomorrow and she will take us back here in time to be admitted Monday morning.  That will be a nice break from the hotel!  We are very thankful.

I am thankful that this doctor hasn't thrown up his hands (yet) and give up and thankful that the test is scheduled tomorrow.  I am a little blue about having to stay for a period of time yet and really  not looking forward to another hospital stay but we will take things one day at a time.  I am also very thankful that my mom has agreed to stay with me so the guys (my dad and Kyle) will be "baching" it for a while yet.  The doctor told us when we reschedule our return flight to leave the return date open since it is hard to say what steps may be taken next.

Wednesday

I had the shunt patency test done today.  It is relatively painless.  Radioactive fluid is injected into the tube of the shunt in my head right before the pump.  I lost a little hair--they shaved about a square inch of hair off but it isn't all that visible just behind and above my ear.  The test was supposed to take an hour but it ended up taking a good two hours instead.  I'm not sure what that will mean for results.  I was also asked to be part of a research test group as they test a new way of determining the level of fluid flowing through the tubes.  I agreed so they did that as well.  We don't know the results of the shunt patency but we do know that the results of the second test was inconclusive.

I see the neurosurgeon at 9:00 in the morning and hopefully we will know more then.  I continue to pray that the Ultimate Healer will provide answers to the doctors for healing.

Tuesday

We are in Baltimore!  That feels like a pretty big accomplishment right now.  I am whipped but I laid down for a few hours and now thought I would just jot a note.

The trip was a bit more "exciting" than what I would prefer.  :)  My parents majorly overslept and woke up at the time they had planned to be at our house.  So we pushed but walked onto the plane just in time.  Then in Minneapolis we discovered that dad's phone had fallen into my bag!  To top it off, we had an incident on the automated walkways.  We got to the end of the flat escalator and instead of my wheelchair rolling off, it stayed put!  My mom walked backwards quickly and then stepped off as people started piling up behind us.  A friendly guy quickly took control and pushed my wheelchair off before people started to topple. 

A blessing is that a wonderful person that we know from Redeemer had seen us get on the plane so he waited for us to get off and then helped carry our bags to our connecting gate.  This was a big deal because it was a very long walk!  Thanks Dan!  He also ended up with my dad's cell phone and will be taking it back to him in a couple days.

I am doing okay.  The trip went well besides the few "exciting" events but I was pretty thankful to find a place to lay down for a while when we got to the hotel.  We just had supper in the hotel and they had fantastic fish, which was a treat for both of us. 

My test is scheduled for 1:30 tomorrow.  We are praying that there are conclusive answers after the testing and that I will be on the road to recovery soon!

By the way, I have written about my sister Tami and her need for surgery.  She is improving quickly although she has the restriction on lifting for another 3 weeks yet.  The great news is that the pathology reports came back clear so she will not have to worry about further treatments for cancer.  We are so thankful!

Monday

Thankfully, I woke up feeling better today.  I'm still maybe slightly worse than I was the last few weeks, but it feels much more tolerable after a day like yesterday.  It is hard to understand what triggers things like that.  Just a random migraine in the middle of other things?  We are praying that I wake up okay tomorrow so that the trip is tolerable.  Traveling on a day like yesterday would have been grueling and been done only through sheer grit.  And I continue to pray that the Great Physician will guide the doctor's decisions to bring me healing.

**A big thank you to the Redeemer Girls Club for the goodies we just found by the door in the garage!  What a treat!  :)

Sunday

Today has not been a good day.  I woke up this morning with my head hurting more than it has for some time.  When Kyle woke up this morning, I had him give me a shot.  It helped some make it more tolerable, but the level of headache is still higher than it has been the last few weeks despite the shot.  Another confirmation to me that going back to JH is the right decision.

Psalm 61:1-3
Hear my cry, O God,
listen to my prayer;
from the end of the earth I call to you
when my heart is faint.
Lead me to the rock
that is higher than I,
for you have been my refuge,
a strong tower against the enemy.

A couple pictures :)

Kylie standing to the right of me

Where did my little girl disappear?

Friday

I made it to one more event for Kylie!  Difficult and I am a fool for trying it, but it did go okay.  Kylie is in drill team and they went to state this week.  Their team did great!  It was a challenge for me between the travel and the competition itself.  Kyle and the kids went into the auditorium and watched several hours of the competition.  I had my wheelchair (which I really don't like but again it made it possible) which I sat in in a few places that were quieter.  The first half I sat in a quiet corner, but then the last hour or two I sat out a little more in a main hall in hopes of seeing Kylie just once with her team.  What a surprise when they all came walking by and stopped and then even took a picture!  So I now have a picture of the drill team with me (in my wheelchair) and I got to see Kylie all ready to go for a performance.  The trip home was tough but pain meds got me home and although it was hard, it was worth it again.

I don't remember writing what happened with the SC neurosurgeon after the spinal tap.  As I suspected, he felt the number was at the low end of normal.  He is willing to send me to a neurologist or consider doing an injection into the occipital nerve in an attempt to help the headache that way.  The neurologist idea is not at all attractive to me since I have gone that route and have tried every drug combinations I think there could be.  I am just not sold on the drug route again since that attempts to mask the symptoms rather than address the problem, and in my case it didn't really mask the symptoms, either.  The second route is something we would consider but JH really felt a shunt patency test was important to first verify the shunt is working correctly.  So rather than jumping into the injection (we don't feel a neurologist especially locally is going to help) we felt that we should see if there was something else to know. 

The reassurance we have with Johns Hopkins is that their neurosurgery department is rated #1 in the nation and this small group of doctors I see specialize in the problem that I have.  JH doesn't believe that the spinal tap is all that conclusive.  They said that the books will say that it is the test to do, but clinically they have found that it can vary from day to day to time of day and be impacted by a variety of other factors.  So I may have surgery, I may have the injection or who knows what other ideas they may have that they haven't mentioned.  Whatever it is, I pray that I can improve and find contentment again in the place the Lord has placed.

Tuesday

"They that wait upon the Lord shall renew their strength.  They shall mount up with wings as eagles!  They shall run and not be weary, they shall walk and not faint."

As a child I remember singing this verse and it continues running through my mind today as everything has gotten quite overwhelming.

As of this evening, I am going to be flying to Baltimore with my mom on Tuesday, December 6.  I have the shunt patency test on Wednesday and then see the neurosurgeon on Thursday.  The results will determine the next steps.  There is a possibility that they would put an anti-siphoning device in on Friday.  They still seem to think that that is the logical next step but we will see what the test result shows.  The surgery, if it would occur, would probably be Friday morning.  I would stay one night in the hospital and be released on Saturday.  We have booked the tickets to fly back on Monday, December 12. 

I struggle with what feels like chasing after the wind.  Do I continue trying to improve my headache?  I am not as bad as I have been at times, but really not very good either.  How long and how many times do I have test after test and the emotional, financial and time that it all continues to take?  It is hard to know when to call it enough.  At this point we have decided that since this anti-siphoning device is something JH has talked about since the first time that I was there that we would do the testing and see if they decide it is necessary.  Then we will see what happens.  One day at a time.  The Lord does have a plan for our family and I need to continue trusting in that.

Sunday

I am rejoicing that I was able to go to church both times today.  It isn't so easy but I try to walk in right before it starts and walk out quickly afterwards, which I really don't like doing! I would much rather visit!   Earplugs make it tolerable but my head hurts more by the time I get home.  Definitely worth it, though.

(By the way I am using abbreviations for places for our privacy so I may delete or edit comments that list names of local places)

I haven't gotten many answers.  Johns Hopkins did call me Wednesday and said that they would like me to come out there for the shunt patency test.  I figured out (not through the ns) that SC does do shunt patency tests so I am pleading with the ns to order the test here for me, but it is not very likely.  It seems like with neurosurgeons, if it isn't their idea, it isn't a good idea, but perhaps I am becoming a little cynical.  So if the SC neurosurgeon doesn't order the test, I told JH to schedule it on a first available basis.  I really don't know what to expect after that.  I haven't heard back from JH since the conversation Wednesday and I haven't heard from SC since then, either.

My head is doing a little better than it was the beginning of the week, but I still have that slowed processing that makes it difficult to function and definitely a painful head. The fogginess is maybe the most frustrating thing, but yet the pain isn't all that great either.  I so long for normalcy!  In all honesty, normal life is not overrated by me!  A lot of things are coming up with the kids that I would like to attend but it will be a challenge in the state I am in right now.  I am happy that I made it to the most important things already, though, and will just take the rest a day at a time.

Thanksgiving went okay for me.  Thursday was the turning point after the spinal tap, which was sooner than it had been the few previous times. I was able to go to Renae's house for the Thanksgiving meal at noon.  I then went home and layed down for the afternoon and went back a bit before supper and enjoyed the meal with them and some visiting.  I was pretty miserable by that night, but I was thankful to be able to participate as much as I did.  If it had been one day earlier, I wouldn't have been there at all.  My back is still pretty sore from the spinal tap but that is the least of my concerns at this point.  I am still pretty determined that I not have another spinal tap unless I am desperate.  My non-medical opinion is that it is gradually damaging the nerves in that area because the tap is done in the same spot each time.

I do wonder sometimes if there is more going on than the pseudotumor cerebri.  Is it still the effects of the Chiari that are causing the headaches or is there another issue?  I pray that we can find more answers.

Wednesday

I had the spinal tap, also known as lumbar puncture, yesterday.  It did not go so well in a few ways.  First of all, the number is not number that decisively tells us what to do next.  I called both ns in SC and JH and had hoped they would call back yesterday but now suspect I may not hear until next Tuesday. 

The procedure was more painful than usual--it just didn't go so smoothly.  They hit a couple of nerves hard enough that I am still having pain down my leg, etc., because of it.  Finally, they had agreed to do the blood patch yesterday.  I warned them that I have lousy veins, but doctors and nurses just don't believe me until they try it themselves.  Well, the plan was to draw the blood once the needle was in my back and bring the blood directly from my vein to inject into the needle in my spinal cord.  The problem was that they had a limited time to do that because each minute the needle is in my back the higher the risk of infection.  They couldn't draw the blood.  It was actually an anesthesiologist drawing and he was a bit frustrated that he couldn't get the blood out of my arms.  They actually took my shoes off and were going to try to draw from my feet but I finally had had enough and they felt that they had taken to long, so they gave up.  No blood patch.  So we will see how recovery goes.

It was an emotional trip home.  I am not a doctor so I don't know what the answers will be but I know enough to know that there aren't going to be clear answers.  I have also decided that I am not going to do another spinal tap unless I have exhausted every other option.  My back aches all the time anyway from the previous repeated taps and this time my back is very sore.  I just don't think I can do it again.

Saturday

Tami is home!  She came home yesterday afternoon.  She continues to have quite a bit of pain but is controlling it somewhat well with a few pain medications and a nausea medication.  She has a ways to go, but the worst is behind her.

I am holding my own.  I don't think I was as bad as I was when this most recent downturn began, but not so great, either.  My goal has been that if I could go to the concert Tanner performed in on Tuesday and the Honor's Orchestra that Kylie performed in on Friday that I would be content.  They have several more concerts and performances they are involved in but these two were my priority.  Thankfully, I made it to both!  Some challenges of course, but I was there and that is what counts.

Hopefully the spinal tap will give us some answers on Tuesday, but I am a little skeptical.  It seems that this is a bit of a mystery and I guess I would be surprised if we had a definitive answer that provided a long lasting and effective solution.  Perhaps it has just been to long, to many tests and many disapointments.  I am not giving up, but maybe it is a form of self-preservation to not count on a cure. 

Day by day and moment by moment we walk this journey.  The Lord has been gracious in providing what we need when we need it.

Thursday

Just a quick update on my sister, Tami.  She has had challenges with pain control and nausea today so she is staying in the hospital again tonight.  It is the very best place for her right now, but I had really hoped that she would get through this surgery a little easier!

Wednesday

Tami had her surgery this morning.  We are thankful that the surgery went well.  She had a lot of pain this morning, but a few hours ago I heard that she is resting this afternoon and the pain is more controlled.  She is going to need so much help for the next several weeks!  She won't be able to lift her baby for 6 weeks, which is pretty tough since she is only 5 months old!  At this point if anyone would like to help, maybe drop Renae or me an and email or call us.  I think she is taken care of this week and then it will be a day by day thing for a while.

I have been up and down quite a bit this week, but overall just not very good.  That being said, I have been much worse in the past, so this is doable.  We really struggled with the best path to take, and finally determined that we would put the ball back in JH court.  The doctors discussed it and decided that because of the distance I could just do the spinal tap (lumbar puncture) here first and if the pressure is low we will know that I need the anti-siphoning device and that can be done by the local neurosurgeon.  If the pressure is "normal" or higher, I will probably need to fly out to JH.  I have the tap scheduled for next Tuesday afternoon.  After some persuasion and probably swayed because of the holiday, the doctor has agreed to do the blood patch right after the spinal tap.  This is a good thing!  I have been taking about a week or so to have my spinal cord "seal up" and leakage causes my head to hurt a lot.  The blood patch hopefully will take care of that.  Normally they won't do the blood patch for a couple days and then I always convince myself that just one more day will take care of it.  Hopefully it goes a little better this time!

So there is a lot going on in my family!  It hurts me to see my little sister suffer, but I am very thankful the surgery is completed.  We pray that the cancer was contained and should find out about that in a few days.  The Lord has been faithful and will carry her through.  He has continued to carry me and my family as well.  This hasn't been an easy time but I continue to move forward and pray for courage and strength.  The Lord chastens those He loves, and I think we are feeling well loved!

By the way, my dad seems to be doing better.  He still has periods of time that he fights the dizziness, but he isn't having the episodes where it is totally disabling, for which we are thankful.  Tanner's foot is healing.  Because he was having problems with the strength in his foot, we finally just had him start physical therapy.  They are working on it and gave him exercises which seem to be helping.  So we are thankful for that, too!

Saturday

Well, I felt better yesterday morning, but not as good as the day progressed.  I would say that it wasn't as intense as it has been this week but not so great last night or today.  It is more evident to others as well as I seem to have developed "the look" of a headache.

We have some decisions to make.  The local ns would like to do a spinal tap and make a decision from there.  The negative is that I have had many spinal taps and I don't think that it is going to provide an answer.  There is also some risk to continue doing repeated spinal taps.  The positive is that it is local so I may be able to get something done here if the ns here felt that it is warranted.

The second choice would be to fly to Johns Hopkins in Baltimore.  The doctors there have discussed my case and they would like to do a shunt patency test to determine what is going on.  This test is not as invasive.  The doctor injects a dye into the tube right before the shunt pump in my head and then they follow the speed that the dye passes through the shunt and into my abdomen.  It sounds like that test is not available here since the nurse told me that she had never heard of this.  Of course the negative is the distance and trying to figure out how to do the traveling and take care of all the kids and their directions.  So we are praying over this now!

Friday

Prayers were answered!  I am not better, but I am doing better than I have since Sunday which is a relief!  We'll see how the day progresses.

Thursday

It has been more of the same here.  My head has continued to be not very good.  I have been trying to push through each day so I have been going to work for a little shorter time then I was.  Since I woke up one morning with it significantly worse, I continue to hope that I may wake up one morning and have it much better!  Late this afternoon I gave in and had Kyle give me a shot to try to get this under control a bit and that has helped.

At this point I am waiting for a call back from Baltimore and another from the local ns.  I had hoped I would hear from both of them today but that didn't happen.  It seems fairly common to wait more than a day for a call back from a neurosurgeon's office, though.  I think between their surgery schedules, etc., it isn't always so quick.  So it is hard to say what the future holds once again. 

Tuesday

We have a volunteer to take Tara to her tutoring.  Thank you, Cipa!

I had so hoped that perhaps this morning I would wake up doing better but that was not to be.  I'm not sure why things changed Sunday when I woke up.  The headache is stronger and enough that it is making it harder to function as well again.

Today I went to physical therapy hoping to get a little bit of the edge off of the headache.  The pt was describing to an intern my challenges as I seem to be one of those unique cases that medical people like to talk about.  Since he has been seeing me for a while he has gotten to know without asking how I am doing.  Sometimes I have a hard time judging the strength of the headache but I thought it was interesting that he said that if he scored me on "well being" (like the pain scale) and 10 was the worst and 1 the best that my very best he has seen me was a 3 and I had been around a 5 for a while now but he would say that I am a 7-8 right now.   Interesting.  I know that I have had much more severe headaches than where I am at now, but it really isn't very good, either.  I appreciated his perspective.

Sunday

We are running stuck with one of Tara's tutoring times and wondering if anyone would be interested in taking her that day. We are looking at Tuesday, November 15. She has tutoring from 6-7:00. If you might be interested, please just drop me an email or give me a call and I can give more details.



For whatever reason, today has not been as good of a day.  Perhaps yesterday was a little to busy or maybe the barometer is just bouncing a little to much.  I decided to stay home from church this evening because my head is just hurting more than I can handle for church.

We have decided to talk to the doctor and perhaps move ahead with having another spinal tap.  It is definitely a procedure that I prefer to avoid, but probably worth find out where I am.  I am regretting that I didn't have the test at JH this spring that monitored my pressure for 5 days.  Not a comfortable test and some risk involved, but I think we would have a better idea what is happening with the results of that test.  I am going to ask the ns here if that is something that he would do and I might call JH to see what their thoughts are at this point.

I can live this way--maybe not as well if all days were like today--but having a taste this summer of feeling so much better gives me a stronger desire to see if there is something that can be done to get me back to "better."  So I guess I will see what the doctor(s) have to say in the next few days. 

Please pray that the Lord continues to guide our steps.

Friday

I have been struggling to get on to this blogsite this week, so I haven't posted.

I have been feeling better since the adjustment.  I'm not "great" but I would say that I am good, for me.  I thought that perhaps my strength would improve and now it seems like things are about they way they have been for a while.  I haven't called the ns yet because I am not exactly sure what to say.  Do I continue striving to get my head back to normal or do I find contentment with where I am?  So I plan to mull this over the weekend yet and call him on Monday.

Someone asked me this week if I have found peace in where I am at.  I think that answer varies!  For the most part, though, I would say that I am at peace with it.  It seems likely that this will be a lifelong problem.  Yes, there are days that are a bigger struggle than others but I can't say that I am angry or bitter.  Maybe sad about some things would be an apt description but I have accepted where I am and have really learned to live day by day.  That doesn't mean that I don't ever think about the future, but I generally don't stew on it.  God has been very merciful to me.

Sunday

We felt that Thursday was a successful day at the neurosurgeon and truly feel blessed that He led this neurosurgeon to work with me.

He was willing to adjust the shunt for me.  It is adjusted back to the setting that I was at this summer and felt so well with.  Both the neurosurgeon as well as Kyle and I are not sure why my head was so good this summer and then deteriorated after the most recent surgery.  Many unknowns in this journey and it seems as if this is a trial and error disease with no clear answers.  It took a few days for me to settle into this new setting again.  I just feel "out of sorts" for a few days after an adjustment and this wasn't an exception.  But my head is feeling better and I am thankful for that!  It isn't pefect and I am still really struggling with the sensitivities, particularly to noise, but I suspect that this is going to be a lifelong battle. 

The plan right now is to wait a week to see how this shunt adjustment feels.  If I am still struggling, the ns would like me to have a spinal tap just to see what my pressure is doing.  Based on the result of that, we might look at a small surgery to add an anti-siphoning device.  Johns Hopkins had been talking about this as well, so we will see how this works out.  The positive is it may help if I am overdraining while I am up.  Evidently it drains more while I am up and drains less while I lay down, which may explain why I feel better after laying down for a while.   The negative is that it causes the shunts to malfunction more quickly.  Or there are a few other things that he thought about checking again depending on the results.  So we will see what the week brings and pray that the Lord guides our steps!

Wednesday

I seem to be going up and down like a yo-yo with my head, which matches what the barometer seems to be doing lately.  Tomorrow I will see the local neurosurgeon and I am hoping to have an adjustment.  So hoping that I can feel a little better!  I am still functioning and moving forward, but it seems like it is getting a little harder again.  And I am oh, so tired!  My energy level is just zip. 

The good news?  Saturday our older kids were gone for the day at All-State tryouts so I  made the decision to go with Kyle to bring Tara to her tutoring.  Riley came along, too.  We had a special time after tutoring going out for a pizza lunch and then we went to a movie together!!!  Huge for me and the first movie I have seen in the theater for a very long time!  We weren't sure how it would go, but I took some medication, put in my earplugs and we went for it.  I did pretty well!  I had to close my eyes during maybe 1/3 of the movie when there was a little more action.  We saw Dolphin Tale, which was a fantastic movie for kids and not a lot of action which made it more tolerable for me.  So that was a pretty big accomplishment and a special time that I could spend with our younger two kids.  I was lamenting the lack of special times particularly with them and now had the opportunity to do something so I am so thankful for that!

I have been thinking lately, though, that I am learning to be thankful that the Lord doesn't always answer our prayers with a yes.  Life is not so easy with my head these days again, but I am once again thankful to be on this earth yet being a mom to my kids and a wife.  So many days and weeks and months I have prayed for the Lord to take me to my eternal home and for now I am thankful that I am still here.  So I am grateful that the Lord's plan is better than my plan.

Friday

I haven't written much because things aren't changing much.  My abdomen continues to be tender but I have decided to wait another week or two before deciding if I should pursue it further or assume that it will be okay.  My head has been somewhat okay.  Although the barometer seems to be fairly steady this week, my head has just not been feeling so great.  I am also really struggling with weakness and lack of strength.  Next week I will be having my shunt adjusted and I am praying that the change may give my head some relief and perhaps allow my strength to build.  We continue to take things just a day at a time and pray for strength to get through each day.

Last Saturday we sold our camper.  It was an incredibly sad day for me.  This summer we didn't get out once primarily because of my health issues.  I am particularly sad that our youngest two won't have the camping memories and experiences that our older two have had.  Life isn't fair and I remind all of our kids of that regularly and I am reminding myself of that as well.  I hope that I can get well enough that my younger two will have some memories of spending time with mom, even if it is the smallest things.  Although that really isn't happening now much at all, I am grateful that they have a mom yet and maybe just being there makes up for the many things that a normal mom would do.

Monday

. . . and maybe not.  I saw the general surgeon today and he didn't feel what the local doctor and my sister felt on my abdomen.  So we will give it a couple weeks and see how things are going.  No surgery would be a wondeful thing!  However, if I do need to have surgery we would really like to get it done quickly since so much is happening the last couple months of the year.  So we will see where the Lord leads.

Saturday. . . and surgery again?

I have been having some abdominal pain and started noticing it more the middle of this week.  After some procrastination and more tenderness on Friday, I had my sister Renae (who is/was a nurse) check out my incision.  The scar on my abdomin is about 12 inches long, but the most recent surgery reopened about 8 inches of it.  Just above where the recent surgery was done the scar extends about 3 inches and those few inches have been opened multiple times.  Just where the new scar begins adjoining that 3 inches I have a firm spot that extends to the left a little bit.  It is probably as wide as three of my fingers going up and down the incision and as wide my my pointer finger from tip to first knuckle.  Anyway, she thought right away that it felt like a hernia and told me to get to a doctor.  I then went to a local doctor and had him check it out.  He said right away after looking and probing that it is probably an incisional hernia. 

I then called the general surgeon that did the most recent surgery and they scheduled an apointment for Monday morning.  It sounds likely that I will need surgery to repair it sometime.  A minor surgery, but another surgery.  I knew that something was wrong with it and it has become more apparent as time goes by.  My fear has been that I would have another bowel obstruction if the intestine had attached to the incision or something.  However, the doctor didn't think that the bowel is involved, which was a relief to me.  So I will see what the general surgeon has to say, but it is looking like another surgery is in my future.

Prior to seeing this doctor, I did make an appointment which is in about two weeks to have my shunt adjusted again at the local neurosurgeon.  I have been functioning okay but still don't feel so great.  At this point it seems that the pressure is slightly low so my hope is that he will adjust the shunt just one notch closed.  I really wonder if I can get back to where I was this summer when I was headache free, but it doesn't seem like it will happen this fall with the barometric pressure bouncing like a ball.  I am really struggling with exhaustion, too.  Perhaps if I am overdraining and that is changed I will begin increasing in endurance.  But another sugery isn't going to help that again.  :(

Thursday

I continue to do about the same.  I've have some days that are relatively good (for me) and some that aren't so great.  This time of year seems to be a problem for me with the weather changing so much.  But one day at a time, it seems doable.  Right now it seems as if my strength is not really improving.  I hope I haven't leveled out where I am right now but perhaps the improvement is still happening but just more slowly.  The Lord is in control, so I try to remember that His plans are better than mine but I have to work on remembering that more sometimes than others.  :)

Tanner is finally off the crutches!  Monday was 6 weeks and he was quite happy to put the crutches aside.  He is still in the boot 24 hours a day and an xray this coming Monday and an appointment will tell us if he can go back to a shoe or if he will be hobbling around in the boot a while yet.  He definitely won't be running the last cross country meet on Friday, much to his dismay!

My sister Tami has gotten confirmation that she does need to proceed with the hysterectomy.  She has scheduled that surgery for November 16.  This is going to be a big deal.  Having this surgery done at age 28 is tough.  She won't be able to lift for 6 weeks and having two kids age 2 and about 6 months is going to be really hard.  She will need lots of help!  We are praying that the surgery and recovery go smoothly and that she can resume her normal life without having this looming overhead. 

Sabbath

Can it be Sunday again?  I'm not sure how time disappears so quickly!

I continue doing okay but not great.  I needed earplugs right away in church both services.  I think the unsettled weather is continuing to cause this.  Oh, for more stable weather!  :)  But, although I am a little frustrated with how my head is feeling, I know I could be so very much worse so I can deal with this.

Thursday

Well, I continue to do about the same.  Today has been a harder day and it finally occurred to me a couple hours ago that perhaps it is because the weather seems to be changing today.  Super windy and just unsettled feeling.  So maybe the weather will change and I will pick up again.  I have been busy, though, and that probably hasn't helped.  I don't see that changing the next few days.  Even if I am not doing the running with the kids, etc., just getting the kids out the door and keeping it all straight is overwhelming!

Exhaustion seems to dog me.  I am so tired tonight that it takes a lot of effort to just walk across the room.  Perhaps this will just be the way it is for me, but it is hard to try keeping up with four kids when I feel so whipped!  But then I remind myself of how much I have to be thankful for.  My headache is there, but I am not locked up in our bedroom absolutely miserable.  That is definitely something to be thankful for each day lately!

Sunday

This is the day the Lord has made!  Let us rejoice and be glad in it!

Another week has come and gone.  It has been a busy week!  I am asked often how my head is doing.  I think that I am looking much better when I am well rested, but when I am worn out or been in a noisy place, I get the headache look fairly quickly.  I do have a headache all the time yet, but for the most part it is mild enough that I can function.  It does become stronger when I am in busy or loud places but I have tolerated more than what I expected the last few days.  That is always a bonus!  My ears still ring all the time and as my headache gets worse the ringing becomes louder.  That is irritating, but I have had that for a long time now and am pretty used to that.  The headache is always harder to get used to, but I think that my pain tolerance for the headache is pretty high.  If I had this "mild" headache years ago, it would have slowed me down significantly more than it does now.

I am continuing to work at being thankful for all things.  I can't say that I am thankful for the headache, but I am thankful for many of the things the Lord has orchestrated for me to deal with it.  With my family close to help us, providing financially for us to continue moving forward, good health insurance :), and a faithful and loving husband that takes such good care of me!  There are many more things, but if any of these things were missing it would be much harder.  It hasn't been easy and obviously my health expenses have made a big impact on us but we are still moving forward and thankful for God's blessing on us.  It is always encouraging to me to know that a few people check this blog out, too, and care about how I am doing.  I hear it in person sometimes, but since I usually don't get out much at all this blog has been a good outlet for me and an encouragement.  It is so easy to think about and emphasize the negative but there is a lot of positive to think about and be thankful for!

Tuesday

I seem to have leveled out since Saturday at a  headache that is quite tolerable.  If I can stay at this level I would be okay.  Still can't handle much noise and activity, but otherwise things are going pretty well.  I am thankful for each good day that I have!

Sunday

A blessing again to be able to attend our worship service twice today.  It is so easy to just take that for granted, but I have learned to appreciate it  a great deal!

I made it to the drill team performance.  Kylie was so happy!  Unfortunately I woke up not feeling well at all on Friday but I did a few things to try to improve my head and it did get a bit better as the day progressed.  I ate with the family at the tailgate party and then we headed to the stands for the football game.  Only a couple minutes there before the game started made it clear that the game just was not going to work for me.  So I went back and sat in the van until Kyle texted me that the drill team was about to start.  I walked over to the fence next to the stands, watched the drill team then walked back to the van.  I was very happy to be able to attend it, but it would have been nice to watch the game with the family.  I have spent quite a few hours sitting in the van waiting until my kids actually perform in an event and then waiting in the van until the event is done.  It is much better than missing these ocassions, but it does become a bit lonely.

Thankfully, Saturday and today have been better days.  What a blessing it is to have a (more) clear head.  I didn't even use earplugs during church today, and that is a first for a while now!  :)  I am praying that I can level out with my head feeling like it has today.  It isn't perfect, but much more doable than it has been.

Thursday

I contiue to struggle with gaining strength.  I become quite exhausted each day and not sure how to get this moving in the right direction.  My head is doing okay but not nearly as good as it was this summer.  I pray that I can "get there" again and maybe stay there longer.

Sometimes it is hard to believe all that has happened.  Can it be true that I have had five surgeries in my brain in the last few years plus several more surgeries?  I think we each just walk through life assuming that these types of things happen to other people and now I am one of those "other" people.  Normally I go through each day without thinking about these things, but sometimes I do stop and wonder how this became my life.  So many people don't know the "real" me but this person that I have become.  It was so exciting to be able to peak out this summer and introduce the real me.  I am sad that the real me has disappeared again.  I am particularly sad that my kids are growing up with just a part of their mom there.  Tanner and Kylie has some memories of the real me and Riley and Tara obviously don't.  I pray that the Lord's plan includes having my health restored or that He gives me the strength and fortitude that I need each day if that isn't in His plan.

Tuesday

What a rollercoaster life can be!  Today was not such a good day.  The only comforting thing to me was that I had pain in my head rather than a headache.  There really is a difference.  The pain hurt more than I like to think is so tolerable, but still better than a headache.  Strange.  I hope tomorrow is better!

Family picture August 2011

(2 short weeks after my recent surgery!)

Monday

Sunday I started feeling better!  My head had been feeling better but I was really dragging and just not feeling well prior to that.  I think it just takes a while for my head get used to a different pressure.  My poor brain has been a bit traumatized over the years.  My headache isn't entirely gone this time, but much more tolerable.

As I said, I am feeling better but still struggling some with the sensitivities yet.  I needed earplugs throughout both church services, but I think that will improve.  Overall I do feel better and hope that I can stay this well or better in the coming days and weeks.  The weakness and inability to multi-task or even separate more than one voice talking at the same time is still quite frustrating but will also hopefully improve.  One day at a time, I continue to remind myself (and Kyle reminds me as well!)

My dad is doing better but still struggles quite a bit with dizziness all the time.  This may very well be a problematic thing that can wane in ebb in severity, but he is carrying on pretty well right now.  He is a tough guy so you can't always believe him if he says that he is fine. 

Tami is getting a second opinion on her cancer diagnosis and treatment on Wednesday.  We are thankful that she is getting a second opinion and pray that the direction and treatment choice is clear for her.

Tanner had an appointment this morning to x-ray his foot to see how the broken bone is healing.  Thankfully it is healing well.  He was disappointed to find out that he will be on crutches at least three more weeks, and then a period of time longer with the boot and no crutches and then a period of limited activity.  He was quite determined to run the last cross country race in three weeks hoping he would be done, and although I warned him that wasn't likely he was very disappointed when the doctor told him what the next few months would look like.  His youthful exuberance was stifled a bit today.  :)

So we all continue to move forward.  Life is certainly not easy and some days seem to go a little easier than others.  Again I long for the normal things of life but am thankful that I am able to go to church and am spending more time in the office.  I pray that as the days pass I can expand my horizons a bit and start "living life" more than I have been able.  My goal right now is to have my head feel well enough to watch Kylie's first drill team performance at a football game.  It takes a lot of energy to go to something like that and my head has to be tolerable enough to handle the noise and activity of all the people so it is a big goal but something that is very important to me and to her. 

Saturday

My head continues to do pretty well!  As I said yesterday, I seem to have this lingering effect which is strange.  My headache is mild but I still have a lot of the issues of having a headache like sensitivity to noise, etc.  That has happened the last few times, though, so it is not surprising to me this time.  I am still feeling quite exhausted a lot of the time which can be so frustrating!  But hopefully that will gradually improve.  I am scheduled for a spinal tap on Tuesday so we will see how I continue to do before making the decision as to whether I should have it or not.  For now I will enjoy having my head feel so much better!

Rejoicing!

So far this morning I am feeling really good!  Oh, I am so thankful!  I have been singing hymns of praise to myself all morning!  :)  I am not entirely sure if the headache is completely gone and will wait to say that for another day or so.  After a bigger adjustment like this one, I seem to have a bit of a hangover affect as my head adjusts to the big change.  We adjusted the shunt 4 notches down this time.  So we will see what time brings, but at this point I am pretty happy and thanking the Lord for His goodness to me!

Thursday

My dad is back home!  His strength has improved but the balance/dizziness is still a problem  He is having difficulty walking because of it.  The doctor suspects Menierres (spelling?) disease, which is a problem with the inner ear.

I woke up with my head hurting quite a bit more today.  I did have my appointment, though!  The best part is that we really liked the neurosurgeon and he adjusted the shunt!  We went into it pretty skeptically but were quite pleased.  He did x-rays to see if there was anything visibly wrong with the shunt and tubing and he couldn't see anything.  He adjusted the shunt down four notches (which was exactly the setting that Kyle and I were hoping for but didn't verbalize) which will decrease the pressure a little.  The big question now is whether that will make a difference.  Anticipating that it won't take care of it, he is scheduling a spinal tap next week.  JH was going to do one of those a couple weeks ago when I was there but then did the ct scan and decided not to.  The doctor would have done the spinal tap today but I had taken a Toradol shot this morning which also acts as a blood thinner so it wasn't safe to do so.  He wasn't alarmed by my medical history, asked questions for good reasons and seems very willing to work with me!  What a huge answer to many prayers!  He was knowledgeable, kind and will work with me which is a package that is hard for me to come by!!

Wednesday

Today started with a bang.  My dad is in the hospital.  He woke up abruptly about 3:00 this morning with severe dizziness and nausea.  He made it into the bathroom but completely lost his strength and was not able to move off the floor after getting there.  Ultimately the ambulance had to come and get him and he was admitted into the RV hospital.  They have the nausea somewhat under control but the dizziness is still very bad and he is very weak.  The doctors feel that they have ruled out stroke and heart attack, which we were relieved to hear, but they don't have a diagnosis.  They suspect a problem with the inner ear.  I had just seen my dad last night and he was doing very well, so this was quite unexpected.  Dad is always very strong and independent so it was hard seeing him in a hospital bed and knowing that he let mom call the ambulance last night alone tells me that he was and is very sick.

I called Omaha today and they said now that they hope to have an answer by Friday.  The ns that I have an appointment with tomorrow had his nurse call me today.  She had a lot of questions, including how I got the appointment in the first place.  She is going to discuss things with the doctor and let me know if I can still come in or not tomorrow morning by 8:30.  I am not surprised by this but it will be interesting to see if he still agrees to see me.

Tuesday

I didn't hear from the neurosurgeon group in Omaha today.  They had said they would let me know by today, but I have heard that before.  This group is the one that I have been the most hopeful about, but not hearing for this long does not bode well for their answer. 

I received a confirmation from the NS in SC, so I should be going their Thursday morning.  I am praying that they will have the expertise to do the shunt patency test which at this point is critical in determining the next step.

Monday

I got another "no" today from a neurosurgeon.  I am waiting for an answer from two more that are in the same group and I am supposed to hear tomorrow. 

Sunday

My head continues to not be so good.  As I have said before, it could be much worse but after being headache free this summer it is very difficult now to go back into the headache mode.

I spoke with the nurse practioner of my neurosurgeon at Johns Hopkins.  The NS is out of the country for a few weeks.  The NP felt that it would be a "knee-jerk reaction" to just go and adjust the shunt down so that my pressure would go down.  Since I had done well this summer at the particular setting I was at and now since surgery my headache has returned she is wondering if the surgery somehow caused the shunt to no longer drain as well, particularly in the drainage tube in my abdomen.  So she felt that a shunt patency test, which I have only had done once and only at JH may give us more answers.  This test requires that they inject radioactive isotopes into the tubing right about the shunt pump and then follow it through something like an x-ray to see how it drains and how long it takes.  (This is my description but may not be exactly accurate!)  We would then see if the shunt is draining properly.  If that comes back looking okay, then she suggested that we reschedule the inpatient cerebral spinal fluid monitoring test that they had planned for last spring when I was there and then cancelled.  They would monitor the pressure in my head for 5 days to see what my pressure is on an ongoing basis and see what affects the pressure.

I still haven't heard from the neurosurgeons that I contacted about taking my case, but one told me they would have an answer by Tuesday.  There is one exception and that is in S. City.  I was declined about 7 months ago by a particular group after they reviewed my records.  I called them this week at a friends urging (thank you gg!) and they agreed to make an appointment without even seeing my records.  I am a little reserved about this but I sent my medical records as they requested and will see if they change their minds after their review.  The only thing that has changed is that now instead of being under the care of the ns in SF that caused me so many problems, I am under the care of Johns Hopkins. 

My hope is that one of the ns will accept me and work with JH.  JH seems think that the shunt patency test is something that is fairly straight forward and should be able to be done nearly anywhere.  I am a little more skeptical since I have never had this test until going to JH but we shall see.  Of course, if the outcome is a problem with the drainage of the shunt, I will be looking at another surgery.  If the in hospital test is ordered, I will be back on my way to Baltimore and I can't even see my way through that right now.  So the outlook isn't all that encouraging right now.  Again, one day at a time.  The Lord has a plan that is right for me.

Thursday

During devotions today I read a bit about Jonathan Edwards.  He wrote 70 Resolutions, and I thought this one spoke to my life particularly at the moment.  I am looking forward to the "after afflictions" part!  :)

"Resolved, after afflictions to inquire what I am the better for them, what good I have got by them, and what I might have got by them." 

I can't quote them all, and they are very good.  But another that I like is:  "Resolved, never to do any thing, which I should be afraid to do, if I expected it would not be above an hour, before I should hear the last trump."

Wednesday

I have had a lot of practice in functioning with a headache, and I guess I am honing up my skills.  It is not the worst that I have had by far.  Not real great, either.  I am going to work in the morning and trying to spend time resting my brain and call "local" neurosurgeons in the afternoon.  This calling of doctors is discouraging and I am disliking the task, but I would really like to have someone from around here adjust the shunt soon rather than go back to Baltimore. 

Noise is still a big issue, and not so tolerable.  I am noticing more light sensitivity again, my ears are ringing louder and I try not to move my head much.  I believe that I have recovered much of my ability to eat, although not yet to the point that I was before this last surgery.  However, I am nauseated all the time again.  It is rather strange because that nausea doesn't seem to be affected by eating or lack thereof, so I think it is again pressure related.  Of course if I eat the wrong thing, it gets worse and I have pain in my abdomen.  I really prefer pain in my belly than pain in my head, though, if I had the choice between the two.

Tuesday

I have recovered from the exhaustion for the most part.  My head, however, is not any better.  It is discouraging.

Sunday

I am still very tired and not feeling so well.  It does concern me but I am hoping that the being so busy the last three days is still having an affect. 

The flight Thursday went well.  Getting to the hotel from the airport was rather crazy because of a big car race being held in Baltimore.  Friday we left the hotel at 6:40 am in anticipation of traffic issues since the first car race started at 8:00.  However, we were able to get to Johns Hopkins shortly after 7:00.  We waited for the doctor for 2.5 hours because of an emergency surgery.  To make a long story short, I had three times I was sent down for x-rays to check the status of my shunt and one ct scan so they could compare my ventricles now to how they had looked when I was there in June plus blood tests.  Since my ventricles are still incredibly small they felt that the best choice would be to continue increasing the pressure in my head.  I was impressed, though, that the doctor listened to me and saw me three times in between the tests.  He didn't just ignore what I said but checked things out before making a final decision.  He is very knowledgeable and kind.  Very refreshing.  We didn't get back to the hotel until about 2:30. 

I asked about my seeming inability to regain strength and in his Italian accent to told me that when the pressure in your head is off, you will feel like you are "crashing."  I asked for some clarification and he said that I will just be very tired and unable to gain strength until we find just the right setting.  It is reassuring that he feels that we will get there, but rather frustrating in the meantime when I am not growing in strength like it seems I should.

The flights yesterday were interesting.  The first was fine, but flying out of Minneapolis a little different.  We took off and about 15 minutes into the flight we were told that we were turning around and going back to Minneapolis because there was something wrong with the plane.  They felt that it would be unsafe to continue.  After landing, we and the airline weren't sure how we would get home but after about an hour they found a new plane for us and we were flown back.  Huge relief.  We suspected that we would be staying overnight in Minneapolis and flying out the next day because the flight was not at all full.  It was so good to get home!

I am quite exhausted yet and not feeling so good.  The jury is still out as to whether the adjustment was made in the right direction.  I had hoped that after a good nap today that I would be feeling better and that is not the case.  Hopefully because it was just so busy the last days with flying out, spending a big day at JH and flying back but as the day progresses I am becoming more concerned.  I really wish there was such a thing as a head transplant!  :)

Isaiah 40:31
But they that wait for the Lord shall renew their strength;
they shall mount up with wings like eagles;
They shall run and not be weary;
they shall walk and not faint.

Saturday

I will go into more detail later, but I did make it home.  Had a few interesting experiences, but the doctor was fantastic and after some testing did decide to adjust the shunt to again increase the pressure--opposite of what I was thinking should be done.  I am too exhausted to determine how I am doing but the adjustment was only changed 2 notches where last time it was adjusted 7 so it shouldn't be a dramatic change compared to last time.  So thankful to be home!

Wednesday

Tomorrow I head to Baltimore for a shunt adjustment at Johns Hopkins.  I am very concerned about it because they plan to adjust it assuming that my pressure is too low, but I suspect my pressure is high.  I fly back Saturday and my appointment is Friday morning so there isn't a lot of time to readjust if it is not done correctly.  Please pray for wisdom for the doctor.  I a thankful that my sister, Karleen is coming along to help.  Kyle can keep things going at home, for which we are both thankul.  He is getting rather sick of going to doctor visits and Karleen is tickled to go. 

I continue calling and asking neurosurgeons and a few neurologists if they would consider taking me on as a patient and working cooperatively with JH.  This is also a very big concern.  I've gotten "no" answers but no "yes" answers yet.  I have expanded my calling to about an 8 hour radius of home. 

Anyone who reads this that live in our area, I have a favor to ask.  Tara has some learning disabilities which require that she be given specialized tutoring in SF three times a week for 6-8 months.  She has to be there (this might change) Tuesday and Thursday at 6:00 and Saturday at 11:00, each time for an hour.  If anyone has a trip planned to SF around those times, we would really appreciate if you would consider taking Tara with you.  She just needs to be dropped off and picked up at those times.  The location is easily accessible near I-229 and Louise.  This has been an overwhelming commitment for us at this point.  Of course, my surgery and Tanner's broken foot have just made it seem that much more difficult to see our way through, but I know that it is something that we need to do for Tara.  Just give us a call if you are interested in helping out anytime. Thanks!

Monday

Well, we didn't have the best news to start out our week.  Tanner was at the podiatrist at 8:00 this morning and he has a broken bone in his foot.  They believe that it was a stress fracture and we are guessing that it may have happened already during soccer last spring.  He has been having pain in his foot all this time (yes, I am a bad, bad mom) but on Friday when he ran it swelled up badly and he could only walk on the edge of his foot very carefully.  The bone was broken all the way through and Kyle & I guess that it may have completely broken while running.  Tough kid.  He ran 2.5 miles (I think) with a broken foot and he was in the top 25%.  Makes me wonder how he might have done otherwise. But Cross Country is out now for the rest of the year.  His foot is in a boot and he is not to put any weight on it for the next 6-8 weeks.  He has decided already that crutches are not cool!  He is handling it well, though.  We had a discussion about how this stinks, but how it could be worse.  It can always be worse.  We are especially thankful that the bone remained aligned so he didn't need to have surgery.  Although he had quite a bit of pain this weekend, now that it is stabilized he isn't experiencing much pain, for which we are thankful.

We trust that the Lord continues to be faithful.  It seems like a lot has happened but the Lord does continue to provide in a variety of ways. I continue working diligently on finding a neurologist or neurosurgeon within a days drive that is willing to adjust my shunt in cooperation with Johns Hopkins.  That would ease the challenge with my shunts to a certain extent and would be such a blessing. 

Saturday

What a blessing!  I had a really good head day yesterday and was able to watch the Cross Country meet that Tanner participated in!  It was a lot of fun and I was so thankful to be able to go.  Unfortunately, there is something wrong with Tanner's foot and after running it swelled up a lot and he is barely walking on it.  So I am not sure about the future of his CC meets, but we are hoping that he can continue!

Today hasn't been bad, but not nearly as good for my head.  I can see that I am gradually gaining strength.  I have a long way to go, but it is good to be able to do a little bit more as the days go by.  Yesterday was 4 weeks since the last surgery!

Thursday

Good news!  Tami heard from the doctor regarding her biopsy and they feel that they found the cancer early.  She will still need to have a hysterectomy but the doctor feels that it is contained there and she doesn't have to do it immediately.  Probably within the next 12-18 months I suppose and they will be watching her closely but it is a relief that it isn't urgently needing to be done next week.  We are so thankful!

I have begun the quest of finding a neurosurgeon that will work cooperatively with Johns Hopkins.  My new tactic has been to cross reference lists that I have run.  One is "area" codman shunt representatives as well as a second list of ns that are part of the hydrocephalus association.  Now, I don't have hydrocephalus but doctors that work with that have more of an expertise in shunts, per my ns in JH.  I had it narrowed down to four doctors within a 5 hour drive.  One has moved and one said no already so I am down to two.  They have asked for records to be sent and then they will decide if they will see me.  Please pray that one of them will say yes!  It would really help if I could drive a few hours for the 5 minute shunt adjustment rather than fly out to Baltimore each time.  I would continue working with JH and they would make the final decisions.  I have a hard time not being skeptical since I have had so many turn downs but I have to try again.

My head has been a worse again today. 

Tuesday

I feel like I have run a marathon!  So much is going on!  Monday I had the appointment with the surgeon as a follow up.  Overall, things are good.  The incision is healing nicely.  I may have a lopsided belly long term and I may not.  (I told the surgeon that if that was the biggest thing I had to be concerned about I would be tickled!)  Time will tell on that one.  The nausea and internal pain has improved, but is a bit concerning so I have another follow up appointment in a month to see how things are going.  If not much better they will do some tests to see if there are any problems.  I suspect that my body has just been through too much and it isn't healing as easily as the normal person would heal.  I suspect the surgeon felt the same way since we are waiting a month but it is nice that he is being cautious and making sure in a month that things are ok.

Finally at the end of the day I got a call from Johns Hopkins.  I have been assured that I will see the doctor on September 2 but the person scheduling has still not gotten around to contact me for scheduling the time.  My biggest concern is that the plan has been to decrease the flow of fluid a little more this time, but I still think that my pressure may be high and not low.  The scary thing is that I will probably have it adjusted Friday morning and I fly out Saturday morning, so we don't have a lot of time to find out if the adjustment is making things better or worse.  I live way to far away to have to turn around and go back for an adjustment when I get home!  We are praying for the doctor to have wisdom from the Lord to adjust things correctly.

The older kids had a half day of school today.  The younger two start tomorrow.  Between freshman orientation last night and then Tanner getting his school laptop tonight and the younger two having open house, it has been a busy few nights. It will be good to have quiet days now because I think I will be able to pick up a little better with some quiet but it is hard to believe that school and everything that comes with it has started again!

Sunday

It was a blessing again to worship corporately twice today.  This evening didn't go as well because I began having sharp pains in my abdomen.  That happens occasionally but thankfully it subsided so I was able to stay.  My head was better today than yesterday for which I was thankful.  I always wish that I could find some rhyme or reason to my head pain levels but there doesn't seem to be any consistency.

Saturday

Tami is feeling better today.  That is a relief!

My head is bothering me more again today.  I would describe it as more than a nuisance today.  It seems like it is growing a little more each day.  This morning I decided that it may actually be a high pressure headache rather than a low pressure, which is what the problem was this spring.  Some of the symptoms don't match what I had this spring while some do.  Why this would happen I just don't know.  It seems like the surgery put my system out of balance in some way but I don't know why. 

My eating seems to be improving although I get quite a bellyache often after eating.  I am sticking with chicken and fish for the most part for meats yet.  I haven't figured out what particularly is causing the belly pain although I know that there are somethings that I just can't tolerate. 

I see the general surgeon on Monday so I will be able to ask about this.  I am also curious about why my abdomen is healing with the left side bigger than the right side.  My stomach looks lopsided!  :)  If that was the biggest problem I had I would be tickled, but it does look rather funny to me.  It's a good thing I haven't ever been the bikini type of girl.  Between the incisions running up and down the length of my abdomen and now the lopsided thing going, I would be in big trouble! :)