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.