New years eve

Another week has passed. The holiday season has been wonderful and difficult. It is so good to be able to participate but it has been too much for me. Between the storms coming through and just too much going on, I haven't been feeling so great at all. I've really tried to behave and not do to much but it seems that just having the activity going on around me is still too much. Hopefully as things start settling down I will start feeling a little better again. As usual, it is a little unnerving to have my head hurting a little more and the ringing in my ears is louder and constant.

This morning we went out for breakfast with Kyle's parents before work, which was so nice! Then the kids went to Karleen's house where they will stay overnight tonight. We will drive down to get them tomorrow. I have really needed some quiet time and am trying to relax now and hopefully that will help things a bit.

Almost Christmas Eve

It has been so fun to receive cards from people near and far and catching up with families that I don't hear from during the rest of the year. Thank you for your beautiful cards and pictures and I especially enjoy the Christmas letters we receive.

This has certainly been the best holiday season that I have experienced the last few years, but this huge storm has been a little hard on me. An enormous storm that is supposedly going to be the worst we've had for 25 years is striking now. I have been feeling it coming for a few days and I am starting to think that our retirement years will definitely have to be in a climate that doesn't have much weather change. Arizona maybe? Fun to dream but not so realistic at this point. But when I hear that we are supposed to have 20" of snow from this storm, Arizona does sound very attractive.

We pray that the Lord bless each of you this Christmas season as we celebrate the birth of the child of God. Sometimes we say that so glibly, yet how amazing it is! Merry Christmas!

Another milestone

I finally had the opportunity to go to a movie last night. What a treat! I haven't been able to do that for a few years, so it was enjoyable and another sense of accomplishment. Our kids also had their Christmas program tonight, and it was so awesome to be there. I can't remember if I was able to go last year but I am guessing I missed it since it would have been a short time after my first & second shunt surgery. My memory still isn't so great for periods of time through the last year.

Also, after a bit of stress about Christmas coming without all my shopping done, my mom and sister took me shopping Friday afternoon and I got that finished up. I had done most of my shopping online, but there were a few things that I needed to actually shop for. I enjoyed getting out to shop and it was so nice to get things done.

This has been a pretty good week for me overall. Friday my headache was a little worse and I would guess that was because of the storm coming in. Of course, it fell on the day that I went shopping, but it all worked out ok. I am so thankful that I am doing as well as I am. This is the best that I have been over the holiday season for a few year, and I am enjoying each moment.!

Post #259 ( I can't believe we've written this often!)

A lot has happened since a year ago today I had what we once again thought would be the surgery to end all surgeries. Good thing we didn't know that it was only the start of quite a string of surgeries. Today is the anniversary of my first shunt surgery. Hard to imagine. It has been a tough year.

That being said, we have been blessed in ways that we never would have had we not had this year. This weekend Kyle's family surprised us with many frozen meals, cookies, desserts and a fruit basket--what a shock that caused my tears to flow. We have been so blessed by family and friends.

This week marks another celebration that we like to recognize each year--Riley and Tara came home from Guatemala the 16th and the 17th of December in 2002 and 2003. We always like to celebrate our family day during the week of this anniversary. Our kids are such a blessing!

I am still doing ok. My strength doesn't seem to be improving much at all, but my head has stayed pretty steady with a moderate headache--very tolerable. This is a busy time of the year and that is catching up with me a little, but overall it is going ok. I am so thankful to be feeling as well as I am in comparison to previous years at this time. It is all in perspective--I will take this gladly.

Tara 2

Tara had her tubes taken out this morning and it went well. She is feeling great.

Tara

Friday morning Tara has her tubes removed. She will be under for just a few minutes. We are praying that the ear infections will stay away with the tubes out. When they were placed she also had her toncils and adenoids taken out so hopefully that will help.

Another storm

Well, another storm came through bringing stronger pain in my head which has now improved again.

Another milestone--it was 5 months ago on Monday that I had my last surgery. In a way it is hard to believe that it has been that long and in ways it seems to have just happened. But 5 months is a long time to be surgery free. So we will continue to be thankful for that!

Closer to Christmas

I have been so blessed! Yesterday and today have been very good days where my head is feeling clearer and not nearly as much pain. I so appreciate these days. This last week otherwise was not as easy. I am guessing because the weather was unsettled? My head was hurting more which wears me out. Perhaps being so busy the end of last week didn't help so much.

Sometimes I feel like a broken record--sorry. My head pain seems to vary quite a bit, but overall has been pretty tolerable. Eating has continued to slowly improve. Still can't seem to tolerate hamburger but I can eat a little ham now and a little beef roast. Progress in small steps. My abdominal incision is still quite red and ugly. It is still tender, but not nearly as much as it was. My abdomen is still a little tender as well. I don't like kids bumping their heads into my stomach for example, which happens with an enthusiastic and loving 6 year old sometimes. The incisions on my head are pretty well covered. The right side scar has been opened several times and doesn't show any signs of growing in hair but the left side seems to be getting a little hair growing in it.

As I have said before, I don't let myself go down the road of what the future holds for me very often, but occasionally my thoughts wander. But then, no one knows what the Lord has planned for their lives, so I need to rest content in that. I am so enjoying the blessings of life a little more normal. A church Christmas gathering with the ladies this morning was so awesome! We sang a few Christmas carols and I couldn't help but get choked up. What a blessing to be there and participate! I have missed so much so I am treasuring each event. Shortly we will be attending our older kids orchestra concert and I am excited that I can be there.

Sunday

I thought it might be interesting for you as it has been for me to compare how I was looking this summer in the hospital (holding my dear little nephew) and how I am looking now. I needed this reminder that I have improved so I had Tami email me the pictures she took this summer. I would say that I am looking a bit better! :) And you can check out my new hairdo! I actually have a style! (You can tell that I am still pretty excited about that!)

We enjoyed the Thanksgiving holiday, and spent time as a family talking about the many things we are thankful for. One of the things that came up often is that I am home and doing better than I was this summer.

We took a family trip up to Watertown Friday--about 2.5 hours away--and visited the King Tut exhibit they had there. We had wanted to take the kids up there for a while, but the exhibit is leaving Dec 5 so we knew we had to get it done. Then we stayed overnight and visited the Terry Redlin gallery the next morning. Of course, I was severely exhausted so Saturday afternoon and today have been mostly times of rest. But I made it! And it went pretty well overall. What a joy to be able to do something like that! The wheelchair came in handy and it is still quite a undertaking for me to do something like this, but still another thing to be thankful for.

Happy Thanksgiving

I have so very much to be thankful for, and I hope each of you can find things to be thankful for in any circumstance that you find yourself. Sometimes we need to search a little further and reach inside a little more to be thankful. Last year at this time my family went to grandparents for Thanksgiving and I stayed home for the day. What a blessing that I will be able to go with my family and enjoy our fellowship with extended family! I am thankful that I am healthier than I was last year at this time, I have four healthy children that are growing in size and in their faith.

Sometimes it is hard to understand why we have struggles and why life can be so hard, in many ways including health but beyond that as well. I have learned through my struggles to yearn more and more for the Lord to come quickly. I don't think that I dwelt on that much before and now I think of the Lord's return so often! I spend much more time in devotions and prayer than I ever did before. So despite how difficult life has been, I truly have been blessed and have much for which to give thanks.

Now for the small things. First I was looking forward to just having hair--bald isn't so fun! Then I looked forward to having enough hair to cover my many scars on my head. Now I am excited that I have a hair style! Of course it is still quite short, but it actually looks like I may have chosen to have it like this! Progress and contentment. Although I will very quickly admit that I have learned that hair is not necessary--really is optional and not so important--it is really nice to have it again, styled. A learning curve!

Have a blessed Thanksgiving and give each of those you love a hug on this day of thanks. Try to focus on all the blessings that we have to be thankful for instead of the things we don't have. We each truly do have much to thank the Lord for.

I made it!

We were able to attend Tanner's concert yesterday. It was fabulous! The traveling was still a little challenging but I did much better this time then I did last year when we went. It wasn't very easy but if I think about how terribly miserable I was last year at this time, I will take where I am now thankfully. Today has been a recovery day. I am pretty tired and beyond the physical tiredness my head is hurting more again today. But we are enjoying a quiet day, although we went to Kylie's violing recital for a short time.

Tougher week

This has been a harder week. A few too many stresses and a bit of weather have made my head worse. Crazy that little things seem to really affect me like that, but they do.

Tomorrow we will watch Tanner and I am praying that my head clears up a little bit for that. We are pretty excited to go, though, and really hope that I tolerate the traveling and everything ok.

I got my hair cut today--that was pretty exciting! Don't worry--not much was cut off--but it does look like I have a "style" instead of just getting hair to grow. It also is styled to cover the scars better, which is nice. People tell me they aren't very noticeable but they are the first thing that I see when I look in the mirror and now I can't see them. Yeah! Another step.

Monday

I've had some big weeks again. Good things, but rather challenging sometimes, too. This Friday we are going to Ames to watch Tanner in honor's orchestra with his cello. Such a honor that he qualified! We are really proud of him. Huge day for me, though! Last year I barely made it through the concert with earplugs (he qualified with voice last year) and wasn't able to tolerate the trip home so we stayed overnight unexpectedly. We hope to do it in one day this time, and I am hoping it goes a little better for me. I think I am doing better with the head this year but my strength is definitely much worse. I guess we will see how it goes!

It seems that I have leveled out in the strengthening process. I am not seeing progress and still get a stronger headache if I try to push it. That is a little frustrating. But staying level is better than nosediving, so we will take this for now.

Tuesday

Last week was a little rough. Way to many things happening for me to keep up with. By Sunday I was fairly miserable but I had a quiet day besides going to church and had a great nap in the afternoon. Yesterday and today have been better then usual--awesome! The weather remains clear which seems to help and I feel a little better. My headache is still there, the ears still ringing away, but overall I have had a couple better days and for that I rejoice!

I ran into someone today that I haven't seen since before all of this began, so it has been a few years. She immediately asked me what was wrong with me. I feel like I am looking more "normal" then I have for a long time, but it must still be obvious that I am not well since it was the first thing she asked. Oh, well. I am still better then I was and I will take this gratefully.

Not much new

I haven't written for a while. I think about writing often but it seems like things have been holding fairly steady. My headaches are pretty constant but mild enough that I can function fairly normally as long as I stay away from a lot of noise and activity. The ear ringing is pretty constant again and seems a little louder, but again I can live with it.

Since the last time I wrote, I really just needed some time to adjust my attitude. As others reminded, many of us go through it and I have needed to work on that. I have been discouraged that things are coming back even though I should be thankful. Compared to what I was experiencing pretty steadily the last 3.5 years, the headaches are much better. I had so hoped that they would go away or at least come and go but it doesn't appear that that will happen for now. I just have to accept that this is the way it is and recognize that it could be so much worse.

My strength does not seem to be improving much. Although I have taken a break from going to physical therapy I have been doing the exercises at home but I don't seem to be progressing much. I remember one of the many doctors that I have seen told me that it may take around two years to regain my strength but I have really begun to wonder if I will not fully regain what I was before. Yes, I am 40 years old and depending on your perspective (namely your age) that can be considered getting older and normal to be slowing down or young and the benefits that come with youth. Either way you slice it, I hope that I do become stronger, both physically and mentally. I still can't deal with things all that well, particularly stressful situations that wouldn't have bothered me before and multiple activities occurring around me. As I tire or become overwhelmed it seems like my brain just starts slowing down and my head hurts more.

Maybe the realities of life as we all know it, with the ups and downs, good and bad, will be fine for me soon. I am getting there. God has been faithful.

One positive thing for me was that I was able to attend work meetings away for two days this week. It was challenging physically and mentally but yet it was so good to participate in them again. I am also excited to be attending the music concert our oldest two kids are participating in tonight. Today has been a quiet day mostly home recovering from my meetings and regaining the strength that I need to go tonight. Silence is still the most restful thing for me and my crazy head!

Wednesday

Tonight we attended the dedication of a new church building and were able to see many dear friends that I haven't seen for quite a while since we moved and no longer attend that church. It was beautiful and so neat to see God's blessing there.

Recently several people have told me that they feel that they can tell me now that time has passed since being in the hospital that when they visited me there they really didn't think I was going to live. That is a sobering thing to hear once, and even more to hear it several times from different people. But it is a good thing for me to hear. I so often forget how ill I was. That is ok, except that it also makes me so impatient and frustrated. The last couple weeks I have just been, in all honesty, discouraged and frustrated. Really no good reason. I should be happy and thankful, which I am, but still just need to get out of this slump. I am really weary of being sick. I have been sick for 3 1/2 years and just so much want to be well. I am better then I have been for a long time. The headaches are bothersome but not overwhelming or horrible. I can deal with them. I just can't seem to gain my strength. I am taking a week off of physical therapy just because I needed a break. It doesn't seem like I am seeing any progress and I decided I just am sick of dealing with all this. Probably not the best choice.

Now I am done whining. I need to move on and just be thankful that I am alive, parenting my kids, being a wife and making steps in the right direction. My continued study of the Psalms of Ascent have definitely been an encouragement to me--well timed.

Sunday

We are better here again. Tara's temp finally stopped Saturday. She was at 103 for about three days, so it is nice to see my little girl back. Kyle and I started the Tama-flu. I may be able to handle the flu just fine but my health isn't all that great so it could really throw me for a loop, too. We opted to take the precaution.

I very optimistically purchased concert tickets a couple months ago for one last night. If I would have waited I wouldn't have purchased the tickets for myself, but since I had them I decided to go with Kyle and the two older kids. I made it through, although I had earplugs and sat in the back behind the glass so the sound was muffled somewhat. My head has been ringing and sensitive all day today, but I was pretty happy that I could be there with Kyle and the kids, even if I didn't sit with them. :) Last time he was in town two years ago we had tickets but my sister went on my ticket because there wasn't even a remote possibility of me being able to be there, so this was progress.

Thursday

We continue to experience what I am guessing is H1N1, although we haven't been tested. Riley and Kylie started our household last week, Tanner had a very mild case over the weekend (I think--didn't slow him down much) and now Tara has it. She has probably been the worst, with the temp up and down, congestion, coughing and sore throat. So we have been home together yesterday and today. The only ones left are yours truly and Kyle. We'll see if we get it or are spared.

I feel like I have kind of come to a stand still. I can't really see that I have made progress the last several weeks in gaining strength. Admittedly, I used to (a couple years ago) burn the candle at both ends, pushing myself beyond what I probably should have. How many moms don't, though, especially when you add work to the mix. I remember running from first thing in the morning until 10 or 11 at night without really sitting or relaxing any day except the Lord's day. It ocassionally drives me crazy when I see so much to do, things that I really want to do, that I just can't do. Returning to the life that I had "before" probably isn't going to happen and that may be best, but I hope I can reach a happy medium. The needs are still there, but the ability to do them just isn't following.

Blessed sabbath

Once again I am quite amazed. I put the last comment in my last post about the few people reading this without really thinking. So was I ever surprised to see the comments and emails that I received telling me that you are reading. Thank you so much for caring!

Today was a step in a direction that I wasn't so happy with. I had to wear earplugs in church tonight. There were a few things that changed that made an impact, but it was still hard for me to do that again.

Thursday

We officially have the flu in our house, but so far I have been spared. Kylie & Riley have not been feeling well, but we are really hoping they won't share.

I saw another doctor on Wednesday. I haven't written about this because again it seems like an unimportant side issue. My left foot is causing me some problems again. I had a Morton's neuroma removed from both feet about 3-4 years ago and it feels like one is back. I saw the podiatrist finally (something I have put off for about 2 years) and he thinks I may not need surgery! Yeah! He thinks it has something to do with the bones in the fourth joint, right smack against where the neuroma was removed. My orthodics were revised and we will see if that will start helping the problem. The thought of another surgery makes me sick to my stomach but if I needed it done we decided that we should get it done this year since we are far beyond deductibles and co-pays. Denial just didn't get rid of the problem, but I am optimistic now that I won't have to deal with that!

My head has been a little better on the average this week. I optimistically bought tickets a while ago for a music concert coming up in town and am a little concerned about how that will go but I really, really want to do that! I guess we'll see.

Thank you to the few that are still reading this blog. I wish sometimes that I knew who has all read this blog and I would like to thank you in person for caring enough to stick with me through this long journey!

Sunday

I hope everyone had a blessed and restful Sabbath. I am so enjoying being able to attend our church twice each Sunday. What a privilege!

I probably spoke a little early on my pancreas settling down. It seems that it was getting better but this week it became a little worse again. Another "episode" occurred again with the pancreas area where I have a very strong pain for about 30-45 seconds under my right rib. It hit suddenly, but I can't move, talk or function until it subsides. It aches for about a day after the pain subsides, but that 30 seconds is painful and scary. I've only had it happen twice. The first time, a few weeks ago, and then this week again. I called the surgeon, after my family's urging, and he is ordering additional tests and I am starting a new drug. It hopefully will help with the eating and this pain that I've had. We'll see what happens. I would rather ignore it. This pancreas thing still feels like an unimportant side problem compared to the headaches, but Iguess it is still a problem.

My head has been varying in levels of headache, but all still tolerable. The weather seems to cause problems. Friday and Saturday were good, which I appreciated!

Better

My head is finally adjusting to the new pressure change. I had hoped that perhaps the headache would leave but it maybe slightly improved it. Thankfully it is still very tolerable now that I am used to the new pressure, so we keep moving forward.

Sometimes I am amazed at how tired I can become, and it is a tired that is hard to explain. Physically I am tired and mentally I am even more exhausted. Of course, that varies but I don't remember ever feeling such a total exhaustion like this before. Oh yes, I would get very tired and exhausted but this is a little different and a bit overwhelming sometimes. I suppose that will just continue to take time.

I am excited to report that my stomach--or probably more acurately my pancreas--seems to be improving a little bit. I ate a little bit of a pork chop and it went ok! Hamburger beyond a few bites still bothers me but I can see that I am making progress with meat and a few other things, which is encouraging.

I have been thinking about this illness and wonder sometimes. I continue to pray for recovery and restoration of health, but should I concentrate more on thanking God for the things that He has done for us through this? Perhaps the answer to attaining good health will always be "no." I can't honestly say that I am thankful for this illness because it is very hard, but I am so thankful for all that I have learned and the things the Lord has taught me through this. I am trying to spend much more time on thankfulness for many blessings but will continue to ask for good health. How many things did I take for granted before this happened? A lot! I guess I still do to a certain extent, but much less then I did before. I also yearn more and more for the Lord to come soon!

But I also look at my husband and kids and am very thankful that the Lord spared me once again so that I can continue being a wife and mom. A friend told me today that when she visited me in the hospital this summer that she really didn't think I would come home. I am thankful that my kids still have a mom and my dear husband has a wife, so we will keep moving forward and see what the Lord has in store for our lives.

Tired

Today was better then last night but I am feeling quite exhausted again this evening. With the shunt adjustment comes a time of adjustment for my head as well. It takes a little while to become accustomed to a different level of pressure in my head, so I don't feel as good and feel like I am out of balance. They usually say to give it a week and it hasn't been much over 24 hours now, so hopefully this will ease up as the days go by.

The Lord has been faithful to us. Sometimes it seems overwhelming to think about dealing with this indefinitely but then I realize that I am lacking faith. God has a purpose through it all and will carry us through during the good and the not so good. So we will take it a day at a time and keep working on trusting Him to take care of the details. Thank you for caring!

Dr appointment

Well, I have "graduated!" I don't have a scheduled visit with any doctor right now. Wow!

Today I met the neurosurgeon. It was as I expected. He was very kind, but really had little to add. The headaches are mild and holding fairly steady so he basically said we won't worry about it until or unless it becomes intolerable. He said that he really doesn't have many tools in his aresenal to treat this besides adjusting the shunt and surgery, which I knew. So we will keep praying that things stay ok. Today he did adjust the shunt open one more notch, which reduces the pressure in my head a little more. This is the most open that he dares to go, and it is a little risky. He thought about it for a while and finally decided that we could try it. The only way we will adjust it open any more would be if we are desperate. This setting is just below the "normal" settings. Again, we will live day by day and appreciate each good day that we are given.

Today I visited the hospital and went to the wing that I stayed in most of the time. It was overwhelming and a bit emotional for me. I saw some of the nurses that cared for me, which was fun, but it brought back some of the emotion of feeling trapped there. I so longed to come home without really understanding how sick I was some of the time so seeing it all again was a little hard.

The pain in my right side continues on and off, particularly after I eat the "wrong" things. Tony, I will probably ask you some questions soon but at this point I am pretty sure it isn't my gallbladder because they took it out along with my appendix as a preventative for future infections this summer when they had my abdomen spread open. The pain isn't right in the middle but middle right under the bottom of my rib. Since it is food that causes the pain the doctors believe that it is the pancreas still acting up but the tube from my shunt is draining in the area around my liver so that could also be causing some irritation as well.

Well, I am so tired I can hardly sit in my chair right now so I will head to bed and answer a few emails hopefully tomorrow!

Wednesday

I have nothing new to report, which is a good thing I think! My headache is staying pretty steady at very tolerable. I hope and pray it stays like this! The pancreas is still bothering me. Yesterday morning I had an episode that was a little scary. I suddenly had extremely intense pain in my right side where the pancreas is. It came on very quickly and lasted maybe 30 seconds and then receded. It totally stopped me in my tracks and I was alone at home which scared me a bit since I couldn't move. So I don't know what that was, but this pancreas issue is getting a little old. I am longing for a good ole steak and some mexican food! :)

Another week

Time keeps passing. . . I feel like I say that over and over! :)

My mom reminded me that I am getting better because I am starting to see so many projects around the house that need to get done. I was expressing frustration that I just can't seem to get these things done and she reminded me that this is a very good sign because a few months ago and before with headaches, I couldn't think well enough to figure out what needed to be done. My sisters were checking the kids' clothes because I didn't have the where with all to figure out what they might need or what they had grown out of. So I may not be getting many projects done, but I am sure seeing them! :) My poor, poor husband. :)

My head is still doing pretty good although not quite as good as it had been. Maybe we can have the shunt adjusted open a little more when I go the end of September. I am a little nervous about that because the more that it drains the more likely it is that my brain will collapse on the tubing. We don't need that because that would then mean another surgery--yuck! So we will see what he has to say. It is still very good yet, though. I can think, listen to music, etc. It would be "interesting" to experience this headache in another time of my life just to see what I "normally" would think of it. I really think my pain tolerance has gone through the roof. I had a tetnus shot a month ago and I remember last time I thought it was achy and uncomfortable. This time I didn't notice it. The same holds through today--I had a flu shot and they warned me that it would probably ache for a few days and I am not feeling anything. Kind of funny. That is a very good thing, I guess!

Moving on

Ok, I had to get past a few things last week and am determined to move forward. I really am, too. I just have to remind myself of that. Sometimes people see me for a short time and assume that I should be back to normal because I seem normal for those moments. Then I get frustrated because if they think I should be back to normal, I really should. I try to do too much then get stopped and am miserable. What a windy road we walk sometimes.

I decided on Thursday that I am done with hats. My hair is about 1/2 to 3/4 inch long now and mostly covers the incisions in the front. I even went to church without a hat this Sunday for the first time I think since December. Wow! I must say I feel like I forgot to fully get dressed when my hat is missing, but it is so nice not to have it on. When I am around people that don't know me I still get double takes and looks, but I guess I did when I had a hat on, too.

Since I have enjoyed the Psalms so much I am doing a study on the Psalms of Ascents, and that has been so good for me. The Lord has been so gracious and patient with this impatient woman that lacks faith even though He has been so faithful to me. I pray that my faith continues to grow through the trials He has set before me.

whining

I was so down yesterday. It seems like this just never ends and I so long to be healthy. I think a variety of things hit yesterday including a long holiday weekend with extra activities, wrong food and continuing weather fronts coming through. My side hurt, my head hurt and I was just sick of it. When those things happen, of course everything else looks worse than it is. I become so overwhelmed with everything and it just seems like there won't be an end or "resolution." Of course, life is complicated with four children and a business to run. Then the loneliness sets it and I can just get myself into quite a downward path.

Thankfully today my side isn't hurting as much and my head is feeling better which helps me to put things into perspective. It could be so much worse--and has been!

Another week nearing a close

Time just keeps marching on! I just can't believe that it is Labor Day weekend already!

I am doing about the same. By today I was more tired after working mornings this week. It seems to just wear me out. My long incision is still bothering me, and I am noticing it more as I wear pants and jeans that rub against it instead of the sweatpant material that is much softer that I have worn more since coming home. It is still a thick scar and very red. The others seem to be looking better and fading a bit. The rash has improved although it is still there. I think it will probably just keep improving with time.

This time of year does concern me a bit. The last three years I have declined rapidly during the later fall season so I am praying that this fourth fall dealing with these problems will go much better. I don't dwell on it but it is always in the back of my mind that things could deteriorate again in the next month or two. That scares me to think about it but yet I know that the Lord will give me and our family the strength to deal with it if that is His plan. He has been so merciful to us already.

Progress

I feel like I can say that I am making progress! I have been working mornings at the office the last few days. It is still very overwhelming but I am thankful to be moving forward. I can honestly say that I am not "as" exhausted by things as I have been--or at lest not as frequently. I still get pretty wiped out quite regularly.

My kids are through their first week of school and it seems to be going well for all. Tara particularly is thrilled with school and she wishes she could go every day like her siblings. That will come. Be careful what you wish for! :) I remember wishing that life would slow down, and did it ever! Not really what I had in mind!

The eating is improving. I ate a little bit of beef roast tonight, and while it made me a little nauseated, it wasn't terrible. Progress!

patience

I need to continue exercising patience. This has been a week where I feel like I can see that I have improved a bit. I am getting a little bit stronger and doing a little bit more. Today was a fun day. To celebrate my 40th and my dad's 60th birthday (our b-days are less then a month apart) we drove to Okoboji together and rode the Queen II boat ride around the lake then went out for supper. We did this without kids and just had a very relaxing and enjoyable time celebrating this milestone in both of our lives. My dad promised me while I was in the hospital that if I recovered from my illness we were going to celebrate--so we enjoyed that celebration today. I need to continue remembering that it is an accomplishment to simply be here, and my strength mentally and physically will come.

Another doctor visit

I visited the general surgeon yesterday. Overall it went well. He is a little puzzled by the rash and also said to give it another month or so. The pancreas issue was discussed and he felt that it could be another couple months before I am able to eat normally. He wasn't alarmed by it but just said that sometimes it just takes awhile for it to settle down and work normally. The pain in my right side under the rib may be the pancreas acting up and it may be from the tubing draining my shunt that is sitting in that area. Either way there isn't much that can be done about it and not overly concerning. Simply put, I need just give it all more time. He thought I was looking a lot better then when I was in the hospital. He is a very kind man.

I have been so blessed with good doctors. Dr Post in RV has just been wonderful, I appreciated the work of Dr Heffez immensely and now I have a new ns that is also kind and caring. I have much to be thankful for.

My head has been doing a little better since the adjustment to the shunt was done last week. Basically they are allowing the shunt to drain more fluid then before so it reduces the pressure within my head. Yesterday and today haven't been as good of days again but I am attributing that to the weather we are having today. But the weather isn't bothering me as much as it was so hopefully that is a good sign that the adjustment helped. Sometimes it seems as though each day is a battle of its own, between trying to eat things that settle, gaining strength but feeling weak, and dealing with my head. I am thankful to be where I am now, though. The Lord does use these tough times in our lives. I wouldn't have chosen this path but the Lord knew best.

Doctor visit

The visit went well today. The ct scan looked good--they always have so I wasn't too concerned about that. Since the headache is on again but staying very mild he decided to adjust the shunt to lower the pressure by 10%, which is a small adjustment. We are hoping that will help with the fluctuations weather seems to be causing and reduce the ringing in the ears. Overall he was pretty positive, though, and felt things were going pretty well. I think so, too. Like I told him, I think it is huge progress when I can have the radio on in the car. I haven't enjoyed or tolerated that for a long time.

The rash, which is a minor nuisance, he thought might be a result of having so many strong antibiotics for the period of time that I had them. I think it is anyone's guess at this point but hopefully it will go away in the next month or two. He was not surprised at all that I am still very weak and not doing a much yet--he felt that would definitely take more time after everything that happened. Again, patience is a virtue I need to keep working on.

I see the general surgeon on Monday and will talk to him about the pain in my pancreas (or liver) and the eating problems I am having.

Today was a good day. My mom took me this time and we got a little shopping done. I am wiped out--no surprise there!

Tuesday

Today we had doctor visits, but I was mistaken earlier--neither were for me. My appointments are on Thursday with the ns and then Monday with the general surgeon. I was mixed up. But the appointments went well and I was able to go along. We left first thing this morning and got home mid-afternoon. Kyle drove. I am wiped now, even though the shopping we did between appointments was in the wheelchair for me. I have to remind myself that I was a very sick person not so long ago because it frustrates me that I can be this exhausted from doing so little--just being out of the house seems to use up all my energy and strength.

I have to admit that I am getting a little discouraged. I really do know that I should not be surprised that it is going to take a lot of time to recover and regain my strength. But I still look at all that I cannot do and how I am overwhelmed by small things and get frustrated. On Sunday my dad turned 60 (happy birthday dad!) and so I had them over for dinner. Then I decided that I could just as well have my sister Renae and her family come too since I was going to pop a ham in the oven. My kids prepared the vegies on Saturday so it really shouldn't have been a big deal. It was a very big deal and totally wiped me out. A simple meal for 14 would not have even fazed me a few years ago and this time I couldn't get it organized--with mom and Renae helping a lot--messed up some things and was wiped by the time we sat down to eat. I shouldn't let it bother me and I know it will come but today I am just sick of it. I am so ready to live a normal life. I want to be able to take care of my family, do ordinary things and go to work effectively. I am thankful to be where I am today but I am allowing the frustration to get to me today. Tomorrow will be better.

Celebration

I have a list of things that I really would like to do, as I mentioned earlier. So many things I have been limited on because I couldn't tolerate the noise and movement around me. Well, one of those items on the list was attending a music concert and I had the privilege last night. Kyle and I attended a Steve Green concert and it was so awesome! What a gifted Christian man he is. It was a little too loud but I made it through the concert and really enjoyed it. What a blessing to be able to attend and enjoy--without earplugs! I had them along and thought about putting them in my ears but I really didn't want to have to do that unless I really had to. My head is a little more achy today but very tolerable--nothing like before.

Each good day is a blessing and we are appreciating each day that we are given that is good. I went in to the office yesterday and today for a little while. While hugely overwhelming at this point I will keep working at that and will hopefully get on top of everything eventually. Again, one day at a time. Next week Tuesday and Thursday I will be seeing the general surgeon and neurosurgeon. I will have the customary ct scan done of my head but I expect a good report from the ns. I am a little more concerned with my liver or pancreas. I continue to have pain in the area of my lower right rib and am still struggling with eating some foods. As long as my head remains pretty good I can deal with these other things.

Thank you for your prayers! As I get out a little more I run into people often that tell me they have been praying for me and our family. What a blessing that is!

Tuesday's thoughts

Time just continues to pass. Although I can't see myself growing stronger and getting better day by day if I step back and look back a few weeks then I can see that I am making progress. I went to the office for a little over an hour today to do some things and hope to start doing that regularly and very gradually get back into the swing of things again. What a process that is! I become overwhelmed so quickly right now but that hopefully will get better as time moves along. The kids start school two weeks from today and I think having more quiet time when I am home will help, too.

I have spent more time while struggling with health issues reading my Bible, especially the Psalms. The more I read through them the more comfort there is to be found. Today I was really struck by Psalm 139 and have read through it over and over. What beauty and comfort the Lord provides to us through the struggles David endured. I love verses 5 & 6: "You hem me in behind and before, and lay your hand upon me. Such knowledge is too wonderful for me; it is high; I cannot attain it." Then verse 16: "Your eyes saw my unformed substance (in the womb); in your book were written, every one of them, the days that were formed for me when as yet there were none of them."

Such comfort the Lord provides us during our struggles! I read a book studying the life of David. Did you know that from the time that he was annointed until the time that he became king they estimate to be 20 years? A great deal of that time he was fleeing for his life from King Saul, living in caves and suffering in many ways. He was a "man after God's own heart" but he suffered a great deal, fell into sin including adultry and murder, yet had a heart for God and is mentioned throughout the Bible--the only man considered a man after God's own heart. What comfort to me as a Christian that God disciplines those He loves and that if I have a heart of repentance He will forgive me. God is so good, and I think I have recognized that even more during these difficult times then I have during other times in my life. What a blessing to see God working out His ways in my life.

Thursday

Tanner and I are both doing pretty well. I think another storm must be coming because I feel it in my head again. I also ate more of a hamburger last night and must have eaten too much because I am having a lot of pain in under my right rib again. So I will have to watch that yet.

Another surgery?

Not for me. . .Tanner had oral surgery today removing his 4 impacted wisdom teeth. :) Sorry--I hope I didn't scare you! It seems to be a rite of passage--something each of us needs to do but not so fun. Tanner has done well and I am relieved that the first day is about done.

I continue to do fairly well. Ironically, these last two storms haven't bothered my head which is great with me. So is it the weather or was it just coincidental? Who knows--we'll see what the next few storms bring.

My strength seems to very slowly progress although I have a difficult time seeing it sometimes. I need to lay down for 1-2 hours a day yet and I'm hoping that can go away soon. It seems like I just get to the point that I can't keep going. Part of it is laying down and part of it is a need to get away from all noise and activity which I attribute to the weakness yet. I get overwhelmed at home everyday yet and look forward to just being able to get through a day without getting overwhelmed and not needing to lay down.

That being said, I am making progress and enjoying time with my family. I am hoping to go in to our office a little bit this week and start getting my feet wet again. I will be going very slow. I really need to get to the point that I can get through a full day at home and feel ok before I will be able to hit the office full strength and that might be a while yet. But I am making progress.

Out three weeks today!

Today has been better. I think the storms are causing me some problems.

Last night I had a third of a hamburger and it went well! That is so encouraging--although a little scary to eat something "new" and not know what will happen. So I am pretty happy about that.

I am still having some pain in or under my right rib. It isn't all the time but I am bothered by it more when I am tired or been up to much. It probably is no big deal but I have a follow up with the general surgeon the 24th and the neurosurgeon on the 20th. I expect a clean bill of health but we'll see what they have to say. The rash that I have mentioned before seemed to be getting a little better, but now I am starting to get new patches of it on my stomach and back. Gr. . . Oh, well. Things continue to improve. I am doing incredibly well for as sick as I was. I have so very much to be thankful for!

Wednesday

I'm still not feeling the best, but a rainstorm came in this afternoon, so I am guessing that might be why.

I am making progress with food. I have eaten fish a couple times and it stayed down. I had a little bit of chicken and that has been ok, too. Progress! I still need to eat smaller portions regularly throughout the day. Yesterday I drove for the first time in a few months--that was rather odd! And I did get my drivers license renewed today. All steps of progress.

Today hasn't been quite as good--who knows why. I am a little headachey--not bad at all but it is always concerning. I walked around outside this afternoon and noticed clouds coming in so could the weather be changing? I really need to watch the weather more closely.

I haven't been taking pain medication since returning from Florida. I really don't like taking it so when I can live without it I generally just skip it. However, I am still taking a sleeping pill. My sleeping isn't so good yet, but hopefully that will improve with time. It usually does.

I don't remember if I have written this already, but I feel like I have an urgency to try to get in as many activities as I possibly can. Even if I am not quite ready, I am pushing to do things. Probably the "just in case" mentality that I just can't shake. I've been up and down so many times and haven't been able to do many normal things for such a long time. So I really want to go out for supper (not sure what I will eat!), go to a movie (it has been a few years), go to a concert (Steve Green is coming to town), and I really wish the kids had activities that I could watch right now while I am doing well. I can't say that I am pessimistic but maybe just realistic after the experiences that we've had. That being said, I really do think/hope/pray that our challenging journey has come to an end and that life will just become more and more normal.

Sabbath

Today I will be able to worship the Lord in church for the first time in a couple months. I am pretty excited!

For those that would like to pray for and keep track of Evan (Chic) Van Ginkel, please look at his caringbridge site. The website name used in Chic. The family would appreciate your prayers!

We finally broke down and rented a wheelchair today. I really can't go out much because I am too weak to walk far at all. I have been opposed to it because I guess I just didn't want to admit that I needed it or maybe hoped I would regain strength faster. Well, today it was clear that it was time. So we got out of the house for a while this afternoon and it was so nice. Now I am pretty tired and will head to bed in a moment. I think I am getting stronger but it is very slow. I think I went backwards for a few days when returning from Florida but that isn't so surprising. I can walk around for a while and do my physical therapy exercises but spend a lot of time sitting and I have to lay down in a quiet area for a few hours a day. But, I am making progress. Patience is a virtue that I need to continue working on.

I always like to look at pictures, so I thought I would add a few of my own. :)

Thursday

Kyle and the kids will be home soon. It has been good for me to have a couple days of quiet time to rest and recover from the trip, etc. I hope I am ready for the busyness of life with a family again.

I am feeling pretty well. My head is very good. I can't say that the headache is gone completely but I would describe it as a dull ache now instead of a headache--very tolerable. I can live this way. I have been able to handle noise pretty well and a lot of movement around me used to be a problem but I can take that as well. My head has been my biggest concern and so far, so good. The rest of it will come. My body is very weak yet, but as time goes by that will improve. I have a rash that started as a few spots on my legs but is getting worse and now is on my face and neck. My doctor believes that it is probably a viral thing, which I am pretty susceptible to because I have been so sick. My right side still hurts, particularly when I am more tired or have been up too long. I continue to use caution in what I eat, but try to eat throughout the day. Sitting down for a few bigger meals just isn't working for me right now.

When I was in the hospital a few of the doctors that visited told me that I had been a very sick woman, and that again has made me realize how serious and sick that I was. If the infection has traveled up the tubing and into my brain, I may not be here right now or mentally may not be the same, so I really do have much to be thankful for.

I am completely bald but I now have "stubble." A few have asked if it bothers me that I don't have hair. It did at first and I am careful to wear hats when I am out of the house. However, after everything that has happened, hair has become a pretty small detail. It will come back. I think I will keep it pretty short so that if I need another surgery and my head is shaved, it isn't such a shock to my kids. They are bothered by my hair being gone the most. My perspective on many things have changed and I have found that having hair just is not that big of a deal.

The Lord has provided so richly for our family through this ordeal. He has given strength in weakness and His grace in adversity. I am so thankful for my faith in Him--I don't think that I could have survived this without Him carrying me and our family through. People have said that I am so strong, but I really am not. I didn't do it on my own and if you would have told me years ago that I would have survived all of this I wouldn't have believed it. God provides for us as we need it and during that time He also used the challenges to strengthen my faith. For that I am very thankful.

Home again

Wow, life is really crazy. Up until the morning that I got on the plane, I really didn't think that I would be able to go to Florida. After all, I had just had 3 surgeries within 1 1/2 months and been in hospital 2 days short of 5 weeks. The Lord really answered our prayers, and it went much better then I had hoped. I am still very weak and have a huge amount of recovering to do, but just being there with the family after all the challenges we have had was amazing. Thank you for praying for us! Kyle and the kids are on the road today and tomorrow and I am praying that they will get home safely as well.

Yesterday was my 40th birthday. I am glad that I made it to this birthday! There have been days that my family wondered if I would be here to celebrate this day. I am not sad about being 40 at all--it really is an accomplishment and I hope a start to a new and better time in my life. :)

Today I get the stitches out of my head. I started counting incisions and "openings" that were made during this last 5 week stint and have decided that I definitely have some war wounds! I have 3 incisions on my head, one on my side where the chest tube went in (and that one bothers me the most!), 2 on my chest where the shunt tubes were externalized, the 12 inch incision running down the middle of my stomach and the three smaller incisions used to place the shunt tubing in the new place next to my liver. Add that to previous surgeries and I definitely have had a few to many surgeries! :)

I will write more later. I really just wanted to write that things went well overall and I am now ready to be home for a while. I am praying that the Lord will grant me health and strength!

One more thing, please pray for Chic Van Ginkel. He was injured in a work related accident and has a brain injury that is extremely serious. He is in ICU and really needs a lot of prayers. He is the brother of Joyce in our office.

Florida!!

This is mom again, I guess I'm not officially laid off yet! Cindy asked me to put an update on this morning, she hadn't found a computer at the motel.

Cindy's trip to Florida yesterday went very well. She flew Southwest and they took very good care of her, even brought her by wheelchair to a shuttle. She did feel the different pressure in the airplane and said it was a little uncomfortable but didn't get a headache. That has been a concern of all of us for a long time, didn't know what would happen or if she would be able to fly, and now we know, it worked!

Kyle had rented a scooter for her and that was at the hotel when she arrived. Kyle and the kids got to the hotel around noon and she got there around 5:00. Kyle and the kids also had a very good trip, thank goodness for car movie screens! They all got up early to beat the crowds this morning and were at one of the parks already around 8:00. Kyle and the kids were enjoying the rides and Cindy was just thoroughly enjoying the fact that she could even be there, she is still very emotional after all that has happened. She said the scooter is very comfortable and will be there with the rest of the family as she much as she can tolerate. She can always be at the motel also, so we are all thrilled that they can be together during this "Happy" time.

The biggest concern is her getting enough food and water while there. She did pack some stuff and they were going to try to get to a grocery store. She really needs to be eating all the time to keep up her strength. She had lost 6 more lbs after she came home, but the last couple days had been going better. Her body had become accustomed to being "fed" at night, and so she didn't even feel good when she got up, but that is also improving. Her cousin was really on top of her care - Thanks again so much Lynn for all you did for her- it was so greatly appreciated by all of us and especially Cindy!! Lynn also did a little shopping for Cindy before she left. She got her some size 1 shorts and they were still a little big on her. She needs to get some meat on those bones!!

Thanks again for all your support! We are also giving MUCH thanks for the Lord's healing and His faithfulness for answering the many prayers offered on Cindy's behalf.
Kathy

Here I go

Well, after talking to my local doctor and the neurosurgeon, I have clearance to go tomorrow! I am reservedly excited. Tomorrow is going to be a big day and a very exhausting day. However, the prospect of spending the time with my family, even if I spend most of it in the hotel, sounds wonderful. After the illness that I have had we are always concerned about a relapse of some sort. It has happened so many times. But I am feeling good considering how ill I have been. I am tired quickly and easily and can't do very much yet. It is going to be a long road to recovery but this will be a nice interlude. Please pray that things go well for me. This is a bit of an adventure and pushing the limits. I really have not desire to visit Florida hospitals. But I feel a peace about going and the time with my family will be priceless.

I won't have a computer in Florida but I hope to update the blog a few times on hotel computers while I am there. :)

Improving!

I continue to improve although not nearly fast enough for me. :) The time here with my cousin Lynn has been wonderful. She is taking such good care of me! Probably the biggest thing that I have to work on is nutrition. I went for nearly a month without eating and a period of that time had severe nausea so I am struggling with food and getting things down. Today I have seen a great improvement, though. I was able to eat cold things a little easier, like fruit and yogurt. Hot things have been very difficult. It is really like I have to teach myself how to eat again. Today I was able to eat more hot things and I amazed myself by eating a piece of pizza (plain) tonight--major accomplishment! We discovered that I have been having rough mornings most likely because in the hospital they gave me iv nutrition all night that was high in sugar so I think my body is waking up weak and shaky because it is missing its nightly "meal." So I am trying to eat something with sugar right before bed and then fruit first thing in the morning to get things going again.

Kyle and the kids left this morning for Florida, which has been stressful. We knew we had this trip coming and really didn't know what to do. Without revealing many details, we had this trip and the schedule for it was not changeable. A good portion of it was paid for us so we really hated to miss it. The plan was for all of us to drive, but the neurosurgeon gave me permission to go only if I flew. So Kyle and the kids left early this morning and I am supposed to fly out Thursday and meet them there. We are supposed to be there for 5 days. It has been very questionable as to whether I will be able to go, but I want to be with the family so badly. I have missed a lifetime of activities and events these last three years and will just be sick if this doesn't work out. But I am taking it a day at a time and tomorrow we will decide if it is going to work. The good news is that today has been a better day and my stamina and eating has improved so I am really hoping it will work!

If I go I will fly home on my 40th birthday the 21st. My goal for quite a while has been to be healthy by my 40th birthday. Well, I am far from healthy but it seems like I am on my way so we are praying that that health will be something I will enjoy as I enter my 40's.

Enjoying home

It is so good to be home! We are all thankful that I am here and I am being very careful not to overdo. Landing back in the hospital just doesn't sound good at all. I am walking regularly and laying down quite a bit, too. I am so weak that it really isn't so hard not to know when to stop.

I had a huge surprise yesterday and still am in shock. A wonderful cousin that I was very close to growing up surprised me by flying in from Washington to spend several days here to help me. I haven't seen her for about 5 years but we have been enjoying each other's company like we we always have. What a surprise and a blessing to me!

Yippee!

I head out of here in about an hour! Yeah! They have taken such good care of me, but going home just sounds so good! :) Enjoy the day! We are! :)

Me again

I have the computer tonight for my last day and night in the hospital. In all honesty, my brain was just not functioning well enough before this for me to really even try to get on the computer or to have interest in it. So I guess this is a big mark of improvement for me to be here, know what I am doing and have interest in the blog or anything computer again.

Although I have many days ahead to think back on what has happened--much of which I don't remember--I just want to to take a moment to thank all of you. Wow, the prayers that have been offered on the behalf of my family and I humble me. Thank you over and over. The gift of visitors in the hospital as well as cards and emails and phone calls to help me pass each day. I am so grateful. Our family has blessed us so much. So much care and concern. My parents were here nearly every day for a while--what sacrifice in love they have shown. I am humbled and grateful to each of you for your prayers, comments on the blog and so many other expressions of kindness. I have had flowers in my room the entire stay--what a blessing that I have enjoyed so much. How to say thank you when being overwhelmed by so much christian love and expression--I don't know how and will never be able to express my thankfullness fully to all.

Now, I have one more night of sleep in the hospital bed, my pic line will be pulled in the morning, we'll go through many, many doctors orders, go home and then perhaps normalcy will creep into our home day by day until finally we can look around and think things really are perhaps normal again. Can that be? We pray that it is and I hope that you will continue to pray for that for us as well.

Good night!
Cindy

Home Tomorrow!

The neurosurgeon gave the OK for her to go home tomorrow. It will be a day for much rejoicing!!
Thank you!
Kathy

Prayers Answered!!

I talked to Cindy a little while ago and she is feeling GOOD!! She has made a 180 degree turnaround since yesterday morning! She still has alot of pain in her rib, and her head is sore, but she is feeling good and no headaches! She hasn't really eaten much yet, so hopefully that will start today. She even dreamed about pizza last night which is wonderful sign! They covered up her pic line and head, so she could have her first shower since she's been there, that always makes you feel better!! She is even talking about coming home, which I guess isn't unusual, she's been talking about that for a long time, but now it's looking like within the next day or so maybe, but no drs have said that yet.

Needless to say we are all just thrilled!!! God is answering the many prayers that have been offered up for her. Cindy has been dealing with all of this for 3 years now this month. Most of these last 3 years she has not been able to function normally or even think much. Just too much pain in the brain. We know God puts us through struggles to make our faith strong, and Cindy's faith is very strong. But we are now hoping and praying that she will be able to live a more normal life.

Again we would all like to thank everyone for all their prayers and support. It has been so needed and also so appreciated.

Thanks again!!
Kathy
(Hopefully I will get laid off from this job in a couple days!!)

Improving

Cindy did show improvement by afternoon, although she is still on both medications yet, but it was just 24 hours after surgery when I left. She did get up and walked a short distance, but no eating yet, hopefully by tomorrow. Although her head does hurt, the worst pain is where they went through her ribs, they maybe pried them open some to get the tube in the right place. She still has no headaches, and that is the most important!! She got her last batch of medication for infection this afternoon.

We are hoping and praying for a big improvement by tomorrow!

Thanks, Kathy

Wednestday Morning

I talked to Cindy earlier and she is in quite a bit of pain again and nauseated. So she is on medication for both. They took out the two valves on top of her head, ran both tubes from inside her brain down behind her right ear and joined them to one and also put the new valve behind her ear also. The tube then went down in front of her rib cage and under it and then over her liver. They did this part of the surgery laporoscopically and put an incision between the two bottom ribs so they could manuever the tube to place it. This is where most of her pain is right now. Hopefully this pain and nausea will soon be over and she can start eating again so she can come home.

This was Cindy's 7th surgery in 6 1/2 months so her body has been through so much. She was feeling so good yesterday morning and was really getting stronger which should help now with her recovery, but that poor body of hers does have a long ways to go. She also has a a very easy hairdo again, won't even need shampoo for awhile!! But that really doesn't concern her much anymore. Hair grows back!

Thanks again for all the prayers and concern.
Kathy

Surgery over

We just met with the doctor and he said the surgery went well. Cindy is in recovery yet so we have not seen her. He is hoping that she will be able to come home in a couple days, but her eating will need to improve first. As determined as she is, I'm sure she will work on that very hard the next couple days!! I'm sure alot of us wish we had that problem!! Since the surgery wasn't very invasive, there shouldn't be alot of pain, although she does have several new incisions, 4 on her head and at least 3 on her stomach and chest. He is also keeping her more antibiotics than usual just to help fight any infections. Hopefully the buzzer will ring soon and we will be able to see her again.

Thanks again for all your prayers - they are sure being answered!
Kathy

Surgery scheduled!

The surgery is scheduled for 7/7 Tuesday at 1:15. It will take a couple hours to, yes, change the valves and put in all new tubing. The neurosurgeon is just so afraid of infection and wants to take all precautions so no more will show up. They are going to put the tubing by her liver since there hasn't been infection in that area. There is too much spinal fluid draining to put the tubing into her chest for fear of pneumonia. She has been an interesting patient up in Sioux Falls, no one has been around anyone with the illnesses that she has so she has had many doctors and nurses come in and check her out. If all goes well and she can start eating better, hopefully she will be able to come home in a couple days. She has been getting "fed" each night interveanously with the nutrients that she has needed.

Please keep praying that all goes well tomorrow and she will be able to have a full recovery and be able to live a normal life again.

Thank you!!
Kathy

4/6 Monday morning

Still no surgery!!!! Cindy is beginning to think she is going to be there forever!! The surgeon had OK'd surgery for today, but the neurosurgeon doesn't do surgeries on Monday. We had the nurse go through the files, called drs but it didn't do any good. We thought it was scheduled, but she wasn't listed on the schedule, so more disappointment, but she is getting better and stronger, although some days are better than others. Her eating has to improve yet before they will release her, but yesterday that also was better. Wish I had that problem!! She was so terribly nauseated for so long, that she is still a little afraid to eat.

Mrs. Cammenga, I read your blog and called Cindy and read it to her, we each had a chuckle out of that one!

If Cindy didn't have those tubes hanging out of her with the bags of spinal fluid, I think she would try to make an escape, but she knows that wouldn't work too well and we have been reminding her of that also.

Cindy is turning 40 on July 21. She has been saying for months now that she is really hoping and praying for very healthy 40's since her 30's have been not very healthy. We are all praying for the same thing! Let's hope and pray that this surgery will be the last of the many that she has had these last years.

Let's hope and pray that surgery WILL now be scheduled for tomorrow and it will be very successful. The headaches are gone, almost too much spinal fluid drainage now since there is no restrictions.

Again, thanks to everyone for your support, prayers, emails, visits, etc. It has made this long journey much easier with your support.

Kathy

4ht of July

We had a small family picnic at the outside cafeteria today with the cafeteria food - not bad!! Cindy just enjoys having someone there, it just makes the days go faster. Today wasn't as good a day as yesterday. She's getting anxious about the surgery which is scheduled for Monday, but no time yet. She wants to talk to the dr ahead of time, only wants the tubes changed. She's just gone through so much and the valves are working, so why change them - our theory. The neurosureon from Milwaukee also said the same thing when Cindy talked to him this past week.
Cindy has just gone through so much the last three years and doesn't want to go through any more than she has to.

We read from Psalms 139 this morning, and it talks about how we are created in our mother's womb and also about how God knows our days even before we are born. We do not understand the Lord's ways but as we read in this Psalm and many others that God knows all things and they are for His purpose.

Please keep praying for Cindy.

Thank You!
Kathy

Thursday

Good morning!

Hopefully there will be a date set today for surgery. Cindy is waiting to see the general surgeon yet, he is the one that will make the final decision. Her chart says "surgery when tolerated". She did eat 2 pieces of toast last night and it went well, no nausea which is the first time she has had something to eat since the big surgery without nausea. She probably had this pancreatitis since then and the drs just didn't pick it up. It took a good nurse to figure it out last weekend, a little frustration with all of this. She is trying to walk and get stronger and is quite determined to get better and get on with life.

The good news is that she is just doing so much better and so anxious to get home and going very stir crazy in the hospital. So if anyone is going to Sioux Falls and has a little extra time, she would love it if you would stop by and visit. I don't know of anyone going there today. Karleen and Kyle and kids are going up tomorrow and we are going to have a 4th of July family picnic at the hospital outside cafeteria at noon on Saturday.

Again, thank you for all your support!!!
Kathy

It's me!

I, Cindy, am writing for the first time in a while. My mom and I were out walking around and found a computer that is available to patients so we decided to try it out.

Thank you so much for your encouraging words through the blog, cards, emails to the house & hospital, and the visits. What a blessing you have all been to me and my family as we go through this.

I am feeling much better and starting to feel like a prisoner in my hospital room so I am begging the doctors to do the surgery sooner rather then later. At this point, it isn't scheduled but they are saying next week.

I have to go--I just got the call that I am moving to room 1242 which is a room providing less care.

Thanks again!

GOOD NEWS!!!!

Today has been the best day Cindy has had since she's been in the hospital. YEA!!!!!!!!!
She wasn't nauseated this morning and there hadn't been much coming out of her stomach since midnight so they pulled out the tube. Her blood tests are all coming back much better and the enzymes from her pancreas are coming down. She started taking some clear liquids this afternoon and that has gone well. I've been talking to her on the phone and her voice is again strong. This morning she could only whisper. She is hoping that they can still do surgery yet this week, but that is quite doubtful. She was in such terrible shape this weekend and now it is just a total turnaround - truly a miracle!! She will probably remain in the hospital yet and a few days after surgery, but at least she is doing better! She is trying to talk them into letting her come home for a couple days, but with the external tubes and the bags holding the spinal fluid, I don't think that will happen.

All the prayers everyone has been offering up for her are being answered - Thank you all so much!!!

Kathy (We are going home and celebrating!!)

Surgery Delayed

With the setback with Cindy's pancreas, the surgery has been canceled. Tami is up with Cindy now and the nurse said it could take about a week for the pancreas to heal. They are talking about next week now for the shunt surgery. So again, Cindy is discouraged, but we are not surprised. Although Cindy thought she was ready, her body is not. Also, we were concerned with drs. The main dr that had been speaking with the Milwaukee dr and was going to do the surgery is on vacation right now, and another one was going to do the surgery, but he was already planning on doing his own thing and Cindy was not comfortable with that at all. When Cindy was speaking with him yesterday and talking about different shunts etc, he said she knew too much which made us all a little nervous. So this has probably been a blessing in disguise.

Please continue to keep her in your prayers.
Thank you all!!!
Kathy

Sunday - The Lord's Day

Although Cindy is looking better than yesterday, she has definately taken a step backwards these last couple days. But we do have more answers today. Cindy has developed Pancreatitis from the removal of her gall bladder. It should heal itself in a couple days but absolutely no eating or drinking and she has to keep the tube in for another 2 to 3 more days to keep the stomach empty so it can heal. Her blood levels are improving, so when she is able to have surgery, that is OK. They are still thinking surgery might be Tuesday, but need to see how she is doing. Her stomach and intestines have shut down, so that all has to get working again but that's good because the pancreas has to heal first. Isn't it amazing how we were all created. The body is such an intricate creation, if everything isn't perfectly in sync, it doesn't work.

Tomorrow it will be 3 weeks since Cindy entered the hospital in Rock Valley and many ups and downs since then. Kyle had all the kids at home this week. The 2 little ones were going to go to Karleen, but Riley (#3) just wanted to stay home with dad. They are all doing well, but missing mom of course. Kyle is pretty amazing!! Kyle and the two older kids are coming to the hospital this afternoon, and we might take them home later and let Kyle and Cindy have some time for themselves.

Thank you all for your prayers and support. Cindy loves all your emails!

Kathy

Better News

They found the reason for Cindy's nausea and vomiting, her pancreas is inflamed. Just what this means we have no idea but the nurse didn't seem real concerned. They need to keep the NG tube in for a couple days to keep the pancreas from working. They also said her blood counts are improving.

The NG tube is really working, no more vomiting when the suction is hooked up. Karleen acutally took her outside in the wheelchair for a little while.

They have also rescheduled her surgery for Tuesday now. So to us this means that they are pretty confident she is going to get better!!

The Lord answers prayers!!

Kathy

Saturday 6/27/09

Cindy continued to deteriorate last night and this morning and was vomiting on stop. Renae spent the night with her last night, Marv went up early this morning and Karleen is with her now and through tonite.

We really don't have any real reasons why this is happening yet. Her colon is inflamed, and her stomach is producing the bile that has been coming back up. They put a NG tube into her stomach this morning to keep it suctioned out so she wouldn't have to vomit anymore. The anti-nausea medication wasn't working anymore although they are going to try something different again. They did give her something to make her relax and sleep now. They need to get her strength built back up again.

We know only God can heal her completely and keep praying for that continously because that is what WE all want. But we also know that she is really suffering. We are praying that God's will be done. He knew from the beginning of time what He has in store for all of us.

Please continue to pray!
Kathy

No surgery

Another huge disappointment! Cindy was even more sick and nauseated this morning. The neurosurgeon came in this morning and didn't like what he saw. He called the surgeon, checked on her blood tests and they cancelled the surgery as she was on her way to the surgery room. Her white blood cells went from 2,500 yesterday to 16,000 today which is an indicator of more infection. They have already done more blood cultures and she is now getting another CT scan of her whole belly area. As Cindy said again this morning, "I just can't do this anymore". She did just come back from the CT scan and is feeling a little better, so it is wait and see again.

Only our Lord knows what is happening and why, and we have to continue to trust in Him. We know God has the answers, but it is so very hard to watch Cindy go through this and know how much she has and is suffering. Please continue to keep Cindy in your prayers. They are needed so much right now.

Thanks for all your support!
Kathy

Bad Day

The surgery is scheduled for tomorrow 6/26 at 11:00. Needless to say, Cindy is very anxious about it and I'm sure scared also. She is just not having a good day, more nauseated than before and has a headache again.
She is getting more transfusions again today. Her platelets and white blood cells
did increase yesterday, but they are thinking something is destroying them, possibly her spleen, but hopefully that will correct itself once she is better.
Kyle and the two little ones were there this morning and he took her outside for awhile, but Kyle said too, not a good morning, many tears. She wanted me to come up later afternoon, which I will do when this is done.
Since this surgery is going to involve the whole front section of her head, she will be getting another GI - sure is easy for her to get ready that way with no hair! But that is the least of her concerns! Hair grows back.
Please keep her in your prayers that everything will go well with surgery and that she will be able to recover from all of this.
Thank you all so much!!
Kathy

Surgery Scheduled

I just got back from visiting Cindy. I took her outside for awhile, she loves to get some fresh air and feel the warm weather and enjoy the sunshine!

She is still on the antibiotics, but her last bag of it will get hooked up at 10:00 tonite, so that will be done by tomorrow morning. Only the dr that ordered can actually finish it, and that goes with everything else that she is dealing with. She has some staples in her side yet from two weeks ago where the chest tube went in, but they were forgotten, and only one of the surgeon team drs can actually order those removed. All rather complicated when there are so many doctors involved.

The platelets were quite low again this morning along with her white blood cells now. She is getting transfusions for both. Another big problem yet is her food intake. She is still just so nauseated and is getting medication for that, but it makes it so hard to eat that way. They are now counting calories, so we ordered up candy bars, hopefully they go down OK. I made chicken noodle soup and brought a supply up this morning, that is something that usually goes down. The dr said that it is probably the antibiotics that is causing it, and it takes about 24 hrs for that to to away after it is finished, which is Friday morning and that is when the next surgery is scheduled.

The neurosurgeon was also in when I was there, so we asked more questions. They are concerned about bacteria, since the tubes were in her belly area and that had infection in it. Since there is a chance that could have gone back to the shunt, they want to replace both shunts to be safe, and with Cindy that is probably a very wise thing to do. They will leave the tubes that are going into her brain alone, just connect the new shunts to the new drainage tubes and this time will connect those two drainage tubes before they go down into her stomach, so lthere will just be one. Hope that answers some questions some of you have. He also said he is planning on keeping her on as a patient which is wonderful, and one of our big concerns. He also said once they get these shunts in place and working right, they should last up to 20 years. She wants to badly to just be well and live a normal life.

Please pray that the platelets and white count go up for Friday and that surgery will go well. This will be her 7th surgery in 6 months time. Thanks again for all the support, emails to Cindy and most importantly, all your prayers!

Kathy

Better News!

They are taking Cindy off the antibiotics this afternoon or evening. Hopefully that will help with the nausea. So far the cultures they are doing with the spinal fluid are still clear - Good news!! They are still planning on doing the shunt surgery on Friday, but the platlete count will still have to go up.

God answers prayers!!!
Kathy

6-23 Another Bump in the Road

Some of the news we have been getting isn't as positive as we would like, so I seem to procrastinate a little in updating. Good news is always easier to post.

Cindy did have a blood transfusion yesterday, but it only brought the platlete level from 40 to 52, not a very big increase.

The neurosurgeon took some spinal fluid out of each one of her shunts on top of her head yesterday. There is fluid draining from each shunt into separate sterile bags that are yet external. The strange thing is the fluid in one bag is clear and it is yellow in the other bag. This is now more of a concern than the platletes and the dr is wondering if there is a connection between these two problems. They are also wondering if there is a connection to this and her nausea that just won't go away. The cultures they are doing on the fluid won't be back for a couple days, but hopefully we will get some answers yet today. Tomorrow is day 14 for the antibiotics, so hopefully that will be one less tube. She is getting fed intervenously, and is trying hard to eat a little.

Cindy is really enjoying all your emails that are being sent to the hospital and also all the cards etc. Someone delivers them once a day and that really gives her something to look forward to. Cindy does not have access to a computer so she can't reply or read the comments left on this blog, but she will when she gets home!!

It's hard to understand why the Lord is putting Cindy and the family through all this, and it seems like our faith is really being tested through all of this, but we also know that God does have a plan for everything. Please continue to pray for her physical needs but also her spiritual needs as well.

Thankyou, Kathy

This is the picture of all the Kaptein girls at the shower with baby Kayden on Saturday. We had a great time all together! THe picture below is of Cindy and Kayden on Friday.

6-22 Set Back

First, just wanted to say what a great morning we had on Saturday with Tami's shower at the hospital. A couple of us come early to help get Cindy spruced up a little, and we all had a great time!! It was hard for her when we all left, but the hospital chaplain that has been so faithful and caring was there to visit and pray with her after we left. We are so thankful for him, he is there almost everyday.

Cindy says thank you also for all your emails. Cindy has them laying right by her and has read them all several times. Please keep emailing, she appreciates it so much!! It really helps to keep her connected to the outside world and also helps to pass the time.

She also now has all her staples out. They took out every other one on Saturday, and yesterday they took out the rest. That feels so much better!!

On Saturday her headache started to come back a little but not sure why of course. Yesterday her blood test resutls came back and her platalate(sp?) count had dropped from around 400 a couple days ago to 52 yesterday. This morning it was down to 40, so she is getting a blood transfusion yet this morning. They will test again after the transfusion and hopefully it will be up. They are not sure what is causing this drop, could be the antibiotics or the blood thinner she was on for a few days after surgery. If it isn't higher afterwards they said it could possibly be her spleen causing some problems. So she now has another set of doctors working with her watching the blood details, and this puts her up to 6 groups of doctors. With all the doctors that she has, they should be able to get her back on her feet.

She just wasn't feeling well yesterday and didn't look as good either. Her eyes weren't as clear so then you know the headache is a problem again, but not bad.

Please continue to keep Cindy in your prayers. Her body is just so weak and she does get quite discouraged. She wants to be home with her family so badly and enjoy the summer with them instead of the hospital.

Thank you again for all your prayers, support and emails!
Kathy

More encouraging news!

We do get conflicting news sometimes and this was one of them but a good one. The head neurosurgeon was in this morning and now says there was no infection in the spinal fluid, which is great news!!! She is on day 9 of the 14 day antibiotic treatment. If she stays well after the 14 days, they are talking about doing the shunt surgery by the end of next week. So this may be wishful thinking on our part, but hopefully she will be able to come home by the beginning to mid week of June 29.

Another positive is they gave family members permission to take Cindy outside by wheelchair to get a little fresh air (it probably smells better up there than it does in Rock Valley!!). Kyle took her out this morning and she fully enjoyed it!!

If any of you would like to email Cindy, she would really appreciate it. She doesn't have access to a computer, but you can send emails through the hospital. Go to www.mckennan.org and click on email patient and that should work.

Our prayers are being answered again, God is faithful!! Please give God thanks for your health, it seems that we don't appreciate it until we lose it. Thanks again so much for all your prayers and concern. They are appreciated more than you will ever know!!

Kathy

A Direction

Cindy just called me and told me the direction the Drs are planning. Cindy is being treated by 4 groups of Drs, Internists, Surgeons, Infectious Disease and Neurosurgeons. Several from each group have been in, so we are not always sure which ones we are talking to and working with. Tonite the Infectious Disease Dr was in and gave us a direction of what they are planning. She is on antibiotics for 14 days beginning with the day of surgery. They will then take her off for a few days and observe her to see if she gets sick again, runs a fever or shows any other signs of infection. If not they will then proceed with the shunt surgery(ies). If she does have infection, it sounds like they will have to pull the shunts and replace them, and that is something we don't want to happen. It took 3 surgeries to get the first one in the right position, and Cindy just doesn't need to go through any more of that. They are also going to test her liver for infection tomorrow. She has really been struggling with the nausea and they are not sure why. They took her off food again today but didn't bring up the NG feeding tube. The infectious disease dr is also going to try different things with the antibiotics tomorrow to see if maybe they are causing the nausea.

Kyle also spoke with Dr Heffez's nurse from Milwaukee. It sounds like Dr. Heffez and the neurosurgeon in Sioux Falls have discussed Cindy's case at length and have a plan, although we don't know what that is yet. Dr. Heffez was pleased with the SF Dr and had confidence in him which makes us all a little more relieved. I will keep this posted as I hear more.

Please continue to pray for complete healing!
Kathy

6/18 Good News!

It's fun posting the GOOD news!

The chest tube is out and already much less pain! They did another x-ray this morning and it looked better so the tube got pulled. Now, it will be easier for her to walk by herself. It just wasn't possible before with the tube and container holding the fluid and all the other stuff she's hooked up to. Marv (her dad) is with her this morning. She is still quite nauseated and quite often is in the mornings, so they gave her something for that. Not sure what is causing it, but probably yet from the surgery and not getting much pain meds through the night anymore. She and the Drs are trying to wean her down from some of the pain meds.

Her youngest sister is going to surprise her today and show up at the hospital with her new baby! She will be spending the day with her again tomorrow. She's coming down from Fargo, ND and going to stay here for a week. We are going to have a baby shower on Saturday morning and one of Cindy's nurses was able to get a room in the hospital for us to have it in so Cindy won't have to miss it! That was another reason yesterday for happy tears! Then more tears because she didn't have a present, but Karleen took care of that!! So, the next fews days should be happy days for Cindy!

God is good!!
Kathy

Teary day

Everyone has to have there ups and downs, and today was Cindy's day. She is just discouraged today, is just so sick of being sick and wants to live a normal life with her family and is so hoping and praying that will happen and wondering if it ever will. So there were quite a few tears shed today, and when she cries, I cry too. It's hard to see your child have to endure so much, even if they are grown up. She was just feeling very isolated up there. She was better when I left her with Kyle's sister and daughter.

The CT scan showed some fluid in her lungs, under her lungs and in her belly area. So the chest tube didn't get pulled out yet today, and that tube causes alot of pain. There is a little concern about pneumonia, so she is trying to sit in the chair most of the time and trying to walk once an hour if someone is there to help her. There are too many tubes and machines for her to walk by herself and the nurses are busy. She does look better every day which is a very positive thing.

The neurosurgeon was also in this morning and said she will have to be in the hospital another 2 weeks before they can do anything with the shunts which also didn't help make her day. We were concerned when he started talking about removing one of the shunts - he doesn't know what she has been through to this point. There are still no headaches at all which is so wonderful and both the shunts are working. Cindy did just call and noticed that one of the external tubes from her shunt is leaking, which isn't good, that could contaminate more so the neurosurgeon was coming back to look at it.

The Drs are all threatening to put a NG tube into her stomach to feed her, and she is just as determined to not get one. She is just really struggling with eating, nothing tastes good and her stomach is just upset yet, like eating when you have the stomach flu, she says. The nurse told me they would get her anything she wanted, even if they had to go to the store to get it.

Please keep Cindy uplifted in your prayers, He is still the GREAT PHYSICIAN, and we know that if it is in His will, she will be healed, and we desperately hope and pray that is what will happen. Please continue to pray also for Kyle and the kids. Kyle has just been so amazing these last couple years through all of Cindy's problems. He is caring for Cindy, the kids, the house and working, not many husbands would be able to what he has had to. God sure gave Cindy a great mate!!

Kathy