Almost one week post-op ....

We are getting close to the one week post-op mark ..... yippee! Monday and Tuesday were long days at work, but I made it. I have to go early and stay later than usual, because the times don't match up with mom's work schedule. She drops me off and picks me up each day at JA. The scooter is working well. I have a bright yellow springy flower on the back of it now. Everyday 15-20 parents easily ask me what happened .... one person asked today if it was tendinitis - wrong! My assistant told me to tell them it was an accident while having a pedicure ... I need a good story.

This morning when I arrived to work, there was a hot pink "Get Well" Easter basket on my desk. It was from a co-worker and was a fun surprise! My staff at work continues to be really good about helping, making sure I keep my foot up, etc. They know the post-op "routine" fairly well, too!

My cast appt. is this Friday at 8:20am ... verdict is still out on the color selection. Not sure if we are removing stitches this week or next. The past three nights I've had itchiness behind my knee area and in front of the knee. Tonight I finally cut the bandage off that had latex in it (I think) and amazingly no more itchy skin. So far I've been able to still sleep all night without any sleeping medication, so I am praying that continues. I don't want to start the sleeping pills again as it was a long time getting off of them.

My arms are starting to hurt with the crutches (even though I have gel pads for the underarm part), so I'm looking forward to not using them as much after Friday. We are back to washing hair and showering at night, since the morning seems to take longer than usual for me to get ready & out the door.

Last year this time was when we knew that the first big plastic surgery did not "take" and we were planning to return to San Antonio early May for the artery transfer surgery. Glad we are well beyond that now. Keep praying that the latest incision heals well. I'm eating lots of protein, fruits, veggies & trying to step up the calcium.

Everything continues to go smoothly & no major complaints from my end. I'm good as long as sleep continues and no hives start. I started drinking the Mona Vie product tonight, so we'll see if I notice it helping with recovery.

Thanks for checking in & for your continued prayers!
Love,
jenny

Doing well ....

Last night I slept like a rock! I was so, so tired! It was good to be home and I slept about ten hours. The weather this morning was messy outside, so we thought it was wise to not attempt to go out for church. Snow and rain is not the greatest with crutches. We had a leisurely breakfast at home and I got my hair washed, which was really needed after several days. We organized things in my room and got it "set up" for the next few weeks. I've just been relaxing at home today and went for a short ride in the car this afternoon. I have had very minimal pain today. I am planning on returning to work tomorrow, although I've staffed heavy and will sit the entire day. Thanks for checking in!

je

Home Again .....

We are home .... yeah! All went very well on Thursday with traveling, getting to the surgery center and the surgery procedure itself. We had about three hours after we arrived, so we shopped (since I couldn't eat). Mom dropped me off at the surgery place and then had lunch w/a high school friend and then they came back to the surgery center about mid-afternoon.

We didn't start the surgery until about 3:30pm and it was about an hour. My doctor had five surgeries on Thursday afternoon. I had the best anesthetic guy ever and got to stay awake for most of the surgery ... I LOVED it! I opted for the block anesthesia from the ankle down, so I was able to have a conversation through the majority of the surgery. No post-op nausea - whew!! The pre-op nurse that I had was really good as well. She called the medicine that makes you relax before the operation a liquid margarita ... she was right. She loved the white daisy painted on my big toe.

Dr. Curry essentially did the same thing we did in November, except he lengthened about another 1 1/2 inches. There was no scar tissue and he said that the ankle capsule(joint) looked really good. He fixed the incision that didn't heal well. Still no explanation on why it happened. However, we are going to take the recovery process really SLOW and aren't going to rush anything.

I was in recovery for about an hour and then we saw Dr. Curry before leaving. He was going to talk with my STL doctor yesterday and update him on what he wanted for follow-up care. He said that the right foot now matches the left foot as for positioning & we could see that, too. I was starving by dinner time on Thursday .... so I ate and went to bed, as I'd been up since 4:15am.

We relaxed on Friday and had lunch at a fun bakery in Dallas. I have a splint on the foot now and will have a hard cast put on next Friday by my STL dr. The splint is wrapped in a huge bandage from the foot to the knee ... it is three times bigger than it needs to be, but it is in the right position & that is what is important. The pain has been manageable & the pain meds are working. A few more days and I'll be through the worst of the post-op pain. We had awesome Southern food and hospitality while staying with our Dallas friend.

The weather in Dallas was cold, windy, and rainy ... it was colder in Dallas than St. Louis. It is good to be home. I am pretty tired, but am going to try not to nap this afternoon so I'll sleep well tonight.

Many thanks for your prayers on Thursday and through the weekend. Everything went better than we expected and we are thankful for the many prayers. Hoping to make it to church tomorrow morning.

Much love,
jenny

Surgery tomorrow in Dallas ....

Today is the 300th blog post ……

Surgery time is 3pm tomorrow ….. we get into Dallas at 9am and don’t have to be at the surgery center until 1pm, so we’ll have plenty of time to do something (not sure what yet). It is going to be a long fourteen hours without food or water! Once the IV starts about 1:30 …. that will help. It is somewhat like a “liquid lunch.” This is a very late surgery time, so I am likely his last “case” for the day on Thursday …. pray that he isn’t tired!

I have a few things to pack still tonight, but overall I’m ready to go and get things moving forward. The pain has continued to progress, so it is just time to get on with it. I’m trading the pain for a cast, so the cast is looking okay at the moment. We fly out at 7am tomorrow morning, but need to be at the airport really early due to the Spring Break crew.

Pray for the following ….
- Wisdom & surgical skill for Dr. Curry
- No nausea or anesthetic issues; might be able to do a local only.
- Safety with traveling
- If a cause is to be known in all of this, that it will be obvious.
- Healing – for no wound issues to occur
- Stamina – mom & JE
- That our actions & words would glorify Him.

We arrive home early afternoon on Saturday and then I’ll update the blog. Assuming all goes well, I’m planning to be back at work on Monday (will sit all day – no worries). I scheduled extra staff next week, so if I need to be more at my desk that is possible.

I am a “wish granter” for Make-A-Wish and am working on two family cases at the moment with just heart wrenching medical stories. I’m continually reminded how much worse this could be ….. I’m not on a ventilator, don’t have a feeding tube, don’t need a special van to get around & we’re not traveling for daily chemo treatments. Obviously, I want my foot to get better and to get back to walking better, but it easy to forget that what I’m dealing with is tiny compared to some other things.
I still have my foot …. we need to see if we can get back to where we were before & hopefully it will be permanent. I still have faith that it is possible …. keep believing with us!

Ready for the next step tomorrow and we’ll take it one day at a time.

Love & hugs,
jenny

Getting Ready .....

Sorry for the delay in updates, but things have been pretty quiet the past few days. I got my handicapped parking pass renewed, confirmed all our travel details and had pain medication scripts filled on Friday. My cast spray that takes away cast itch arrived on Friday too, thank goodness! I won't know a surgery time until Wednesday and then will post the time. My mom came over yesterday and we organized things in my basement and then last night I had dinner with friends from church. This afternoon I have to work at a bowl-a-thon fundraising event for work.

This week will go quickly .... Monday is pedicure night - Tuesday evening I have to speak in Belleville, IL to a group of parents and then I'm guessing I'll need to finish up last minute things at work on Wednesday before I leave.

On Friday at work a parent told me about this product called Mona Vie. It is a fruit drink that is supposed to be healing and overall improves joints/bones. The mom that was telling me about it gave me some to try, but I need to wait to start it until after I return from TX. It has been endorsed by Dr. Oz.

I haven't decided totally yet, but am leaning toward not taking the laptop to Dallas. It is a little heavy and coming back my mom has to carry everything. Last time I took it and didn't use it because I was so sick .... although I'm hoping that will be better this time. I am going to beg to do a block anesthetic for the foot and the "loopy medicine" and try to skip the general anesthetic.

Need to go make some slime concentrate, so the kids can keep making slime in Monsanto when I am gone. Hope you are enjoying the spring St. Louis weather!

je

Hip issues today ....

I did finally hear back from my STL orthopod today and he will do post-op care for me in St. Louis. I'm not sure how thrilled he is about it, as I think he is skeptical of this working .... we'll know eventually. For whatever reason, pain seems to be a much bigger issue now than it was in November.

Pray that my artificial hip holds out a bit longer (really a lot longer). I really struggled with it today and I know it was a hip issue and not so much from an altered gait pattern. I am at the twelve year mark with the hip and was told two years ago that it would need to be replaced likely within a year. Well, I've pushed it two more years and know at some point there will be no choice but to replace it. (This is a standard surgery & really straight forward, so no worries about it being the same as the foot deal.) Needless to say, I don't see any possibility of doing anything on this before July, so pray that this improves. This is something that normally you plan way ahead for because a blood transfusion is involved & either myself/friends have to donate blood ahead of time. Bottom line: the hip HAS to last 4-6 more months!

Tonight I had my hair cut and colored, so I'm good on that for the next month. I have not had kiddos at work for the past three days (Spring Break week), which has been a big blessing as I've been able to sit more and work ahead on some projects that will need attention while I am out at the end of next week. We have 5 visit days next week, so this will be over 600 kids - glad I will be out two days!

Hugs -
je

Getting Organized .....

Not a lot new has happened over the past few days. I've been trying to get organized at home and at work. Everyone at my office thought I should have just stayed in Dallas and had the surgery on Wednesday, but that would have been WAY out of character for me! I did not have crutches with me & I was alone. It is only nine days away and I think it will go quickly. I sent an e-mail today to my STL dr. and am hoping that he is supportive & willing to do post-op care.

All things considered, this surgery is fairly small compared to other things we've done. Since it only involves soft tissue and no bone, it makes everything a bit easier. The hardest thing is going to be not assume that it was successful after 2-3 months .... we're just going to need to take it day-by-day and see how things progress (easier said than done).

We will be able to stay with our Dallas friend next week. We fly to Dallas on the morning of 3/26 & then surgery will be that afternoon (at a surgery center) .... return to STL on Saturday (3/28). I am hoping that the anesthetic scene is better this time, as it didn't go well in November. I'll likely use crutches for the first week to try and give the incision area a strong start at healing and then can put weight on it for the following three weeks.

Wishing you a joyous week!
Jenny

Follow-up from Dallas Surgeon ....

Warning: Long blog entry

Good Evening ….. first I want to say a big thank-you to the many of you that prayed today. Thank you for continuing to read the blog, your kind e-mail messages, and most of all for lifting up my foot situation in prayer. I barely understand what is happening with my foot & yet I am continually in awe that anyone else would attempt to understand our recent set-back. Thank you for continuing to walk through this journey with us … it means a lot. I was reminded yesterday that often God does His greatest work when all else has failed and I’m trusting that is what we are seeing now.

I am also very grateful for having a staff of 8 part-time individuals that I can leave in charge of a visit day at work & not have any worries that all will go on as usual with 120 kids, 4 teachers & 25 parents. It is a lot of responsibility. They are all moms with busy lives, but they are a great team and are always flexible if I need someone to change working days, stay late, or do whatever is needed.

Today has been a busy and productive day. I could not fall asleep for anything last night, so I resorted to a sleeping pill at 11:30pm. I was thinking about too much and could not relax. It was a short night when the alarm went off at 4:45am. When I arrived at the airport this morning, there were easily 350 people in line waiting to get through security. People were leaving early for Spring Break. I wasn’t sure if I was going to get through the line in time for my flight, but thankfully it moved along. Then I got stopped at the metal detector for my artificial hip – more time ….. & the yogurt for breakfast that I threw in my purse caused a stir for concern. My gate was right across from the security area, so I walked right onto the plane and I was the last one to board. Just a tad bit stressful!

I made it to the doctor’s office on time & one of my mom’s friends (from high school) met me in the waiting area. We asked her to come along for another set of “ears.” We met with Dr. C for a long time and all things considered, it went about as well as I expected or could have hoped. This is the deal …

The tendon has contracted again and it is essentially “stuck” inside & it cannot do its job. It needs to be “released” and we need to try again. The incision area that is starting to come open is at the bend area where the foot meets the ankle. It gets a great amount of stress and pressure and when I started walking more, this came open (not a lot, but a little). The open incision section, tightness at the ankle and the toes remaining fixed off the ground are all related. We are basically back to the same situation as in November. The tendon is capable of working because it worked well for 2 ½ months. It can do the job of relaxing and contracting, but since it is “stuck” now it cannot work. We don’t need to lengthen a lot more – just get it back to where it was before. I have lost a LOT of ROM, but that can improve eventually.

He was super impressed at how well the foot did function when it was doing well. If we were not on the “right track” w/this, he said we likely would not have seen it work from the beginning. The strength in the foot is good, but he agreed that it is not possible to live w/it the way it is now. I will have more hip issues w/time if we do not work toward improving things. Pain all comes from the fact that the tendon tries to work, but it cannot & then the walking on the heel only is added stress.

Why did it happen? – No one really knows …. Impingement, scar tissue, tendon is somehow “trapped” - it is all a guess. Increased usage may have been a factor, but he agreed that he would have walked on it a lot also, especially if there was no pain. He has not seen this happen to anyone else & advised that I probably won’t find anyone else that has had it w/everything else that has previously occurred; nothing about this is normal, so you really can’t compare it to anything. He stated again that it is a soft tissue surgery (easier than bone) and it is a relatively short recovery period, so he confidently thought it was worth doing it again with some minor changes. He knows I want this to end – no question there. It was very obvious that we need to try again and have faith that it will work. He will talk w/my STL dr. to coordinate specific and strategic follow-up care. The “foot drop” possibility is still a risk, but everything has risk (there are a few things that you can do for it, if it happens). There is risk in doing nothing, too.

He thanked me for the nice thank-you note that I sent him several weeks ago & admitted that he was shocked when I called his PA to say that things were not good. As he left the room, he said to skip writing the note the next time & he will assume that no thank-you means all is well! I laughed and said that this might be the one time that it will be okay NOT to write a thank-you note.

The Plan:

- Re-do the tendon lengthening surgery on March 26th; in Dallas.

- Clean out & repair the incision section that is open.

- Cast a little differently this time.

- Change cast more often & keep close watch on the incision.

- Possibly take an anti-spacisity medication as a preventive measure.

- Play everything very cautiously this time w/movement & exercise, pt when the cast comes off.

- 4 weeks in a weight-bearing hard cast; follow up can happen in STL.

Knowing that I was in pain, he offered to do the surgery tomorrow but I was not prepared to do that. I need a little time to get organized at work and home. It is a bummer that another surgery & cast needs to happen, but I am okay with this. We are moving in the right direction. The friend that was with me agreed that he is a very good doctor and she was impressed with his explanation and patience today.

I met another friend & her daughter for lunch and we had a nice visit together. I then drove to my favorite jewelry place in Dallas (Sam Moons) and spent an hour shopping there (good mental break), before heading to the airport. It was a cold, gloomy, and rainy day in Dallas today, but despite all of this I boarded the plane to come home feeling really good about getting a plan in place.

Eickhort’s are not known for quitting and this is no exception …. My prayer this morning was to simply know without a doubt what we were supposed to do next and this happened today …. despite it all I am grateful and hopeful that there will be a warm summer day when I’ll be walking well again .... only God knows the exact date, but it will happen.

Thanks again for praying, your phone calls, and for caring.

Love & hugs,

Jenny

No Neurological Problem!!

Today was somewhat better ….

The neurologist appt. was the best neuro dr. that I’ve seen! She was running behind, so I waited an hour past my appt. time just to see her …. then, she spent another hour talking /examining me. We “hit it off” right away & it was a big bonus to see a female doctor. She was very thorough, caring, & smart. She watched me walk and did all the standard neuro exam “tests” to make sure every part of the brain is working – it is!

The bottom line is this: THERE IS NO NEUROLOGICAL FOOT ISSUE!

She said to stop pursuing a possible neurological problem, as it does not exist. It is NOT dystonia or any other movement disorder. She said that the muscles and nerves are working correctly. The tendon may be contracted, but this cannot be seen by her specialty. She is POSITIVE that it is still a mechanical orthopedic problem.

There is a small area at the ankle where the skin bunches up and you can see it. This is where the pain exists and were we are guessing the tendon is stuck, because you can see the area kinda twitch when I walk. There is scar tissue in this spot, but it also visibly looks like something is bunching up or getting caught under the skin area.

She wants me to call the plastic surgeon tomorrow in San Antonio, as a small section from the May surgery is starting to come open. She questioned whether it was a problem w/the stitches, as we are 10 months post-op …… at any rate, we DON’T want it to open up any further. She wasn’t sure if the TX would operate again until that gets cleared up. It is so tiny that it is going to be hard to take a digital picture, but I will try tonight.

The neuro. doctor felt bad that she wasn’t helping me much, but I explained that she had helped a ton just by “ruling out” a neuro problem. She admitted that most neurologists want to always tell you some diagnosis, but she was extremely confident that my issues were strictly orthopedic. No need to spend more $ on neuro co-pays or tests. We talked a little about amputation and she was adamant against it ….. she said the post-op problems associated with that are absolutely massive & there is never any “going back” w/that decision. The chronic pain and phantom pain that usually come w/a prosthetic device are almost guaranteed to happen. She said to keep pursuing every orthopedic path possible and don’t give up on it.

I have a different orthopedic dr. for my hip situation, which I really respect & admire, and he has expressed the same negative views on the amputation idea. He has shared the same thing; don’t do it unless I have a big infection.

I had to return to work after my appt., so I didn’t leave the office until 7pm tonight. It has been a long day and I need to get my ducks in order for the TX day tomorrow. I will take my laptop tomorrow, but it may be early evening before I can update the blog at the airport.

Very thankful that it is NOT a neurological problem and to know that we need to stay on the orthopedic path & keep at it …… still a long road ahead (I think), but feeling a tad more hopeful tonight. Today was the first time that I felt like we had a definite answer that was very concrete and not something vague or general.

No gait test scheduled, but the TX dr. said that he could diagnosis the tendon contraction without the test – let’s hope. I also sent a very strong “help needed” e-mail to my STL dr. last night and hope to hear back from him tomorrow, as he was in surgery all day today.

Pray for some reasonable treatment option to surface in Dallas tomorrow … 10:50am appt. w/Dr. C!

Abiding in His grace,
Jenny

Tough Day .....

Disappointing day today ….

The ultrasound results came back today and it did NOT show any scar tissue. The dr. left a message on my answering machine, so I didn’t get to talk with him. He believes the pulling up of the toes is a different issue, which I strongly question. Will explain more later, but this is not correct. No suggestions for treatment. So, the doctor that we consulted with on Friday wasn’t as much help as we had hoped. He will dictate a note and send it my Chicago orthopod, but she has not responded to the last three e-mails I’ve sent. I think our working relationship is over, unfortunately.

I was miserable with pain today at work. My artificial hip is starting to become an issue (pain), as my walking is just so “off” and not right.

I stopped by my pt’s office today and he quickly took more measurements to check progress. We are moving in the wrong direction on this (you want higher numbers) …. (no big surprise, based on how awful it feels).

Right Ankle AROM
Dorsiflexion +5 deg +8 deg -2 deg -5
Plantar Flexion 28 30 24 15
Supination 0 0 0 0
Pronation 48 55 41 40
(Keep in mind that it takes 4-6 weeks of therapy work for me to gain 1-2 degrees normally, so if I lose even a few numbers this is very significant.)

The gait test at Baylor probably is not going to happen, as I can’t seem to get anyone to do the script paperwork. Still working on it, but it is looking doubtful. Hoping for a better day tomorrow & Wednesday ….

je

Big Week for Opinions Ahead .....

This week is a pretty big week, so keep praying! I am about at my limit with pain with the situation, so we are going to go with the first reasonable explanation and treatment solution. This week will be the 4th week of struggling with this. My handicapped parking pass expired on Saturday, which is a bummer!

The friend that was going to drive for me in Dallas fell yesterday and is now in the hospital recovering from wrist surgery this morning. We are still going to try to meet for lunch, but I will need to get a rental car and drive now on Wednesday. I somewhat know where I am going.

Either tomorrow or Tuesday, I am stopping by my pt's office to take ROM measurements and see where we are now. I don't expect it to be better but if it is getting worse, I need to know how much worse. Will keep you posted on this.

Pray that I am able to get a dr. to order the gait test at Baylor ... if it is to happen I need someone to move quickly on this on Monday (all my docs do surgery on Tuesday). It takes a script from a doctor, but then I can schedule it myself.

I looked at the ultrasound pics on the disk today. There are 33 pictures but it was a quick viewing, as I don't have a clue what I'd be looking for! Will take the disk to both appointments this week.

I have kiddos at JA every day this week, except Thursday ... this is really good, as I will be tired after travel stuff on Wednesday.

Appointments this week:
2:30pm - Tuesday - neurologist - Dr. L - STL
10:50am - Wednesday - orthopod - Dr. C - Dallas, TX

Keep the faith that we'll make big progress this week!
je

Home from Chicago ....

We are home from Chicago …. it was a very quick trip up one day and back the next day. Downtown Chicago traffic proved to be somewhat challenging, but we made it. I would not want to live there & deal w/that everyday.

We met w/the orthopedic dr. this morning & he wasn’t totally sure to what to make of the situation. He didn’t seem to think it was neurological in nature. He thought perhaps there was scar tissue or some other blockage at the ankle area that was perhaps restricting range of motion. The x-ray from today was normal. He ordered an ultrasound to see if scar tissue buildup was present, so we did that at Northwestern Hospital before leaving today. He will call me next week w/the results of the ultrasound. The next step depends on the ultrasound (in his opinion), so the verdict is still out. He was familiar w/most of the surgeons that I’d seen previously. No explanation for the pain issue, difficulty walking or decreased ROM.

It has become obvious that this is not the type of medical problem that has a clear cut medical name or solution. No one has agreed yet on what the problem is & how to fix it, but hopefully that is to happen somehow yet. I do have a gut feeling & opinion on the whole thing, but I feel like I should wait until after Wednesday to share it.

When I arrived home tonight there was a message on my answering machine from another neurologist’s office that I was referred to by the neuro guy that I saw last Tuesday. It is someone else w/Barnes-Wash U …. Anyway, they wanted to see if I wanted to schedule an appt. for July 27, 2009 ….. that was the laugh for the night. I hope to have this solved WAY before that date!

I am glad I have the Dallas appt. this week & am still working on seeing if I can get a script to do the gait test again at Baylor, while I am in TX for the day. I will still meet w/the female neurologist on Tuesday in STL & then the Wed. appt. will be it ….. I will really be “done” with appointments by Wed. evening.

Thanks for your many prayers today for safety, wisdom, and acceptance. My mom ended up going w/me, so we discussed the situation a lot on the way home. I think for as long as I’ve been at this, I have a fairly strong sense for how it feels, lays, felt when it was “good,” how it responds now, etc. We will see what happens this week …..

je

Thursday morning thoughts ....

A few thoughts that I read this morning ….

Often God seems to place His children in positions of profound difficulty, leading them into a wedge from which there is no escape; contriving a situation which no human judgement would have permitted, had it been previously consulted. It is a platform for the display of His almighty grace and power. You will never be able to thank God enough for having done just as He has. Perhaps God isn’t finished with my foot situation yet and there is still a greater purpose.

I am ready for the Chicago trip and have faithfully prayed that we’ll learn whatever we can from this physician. Who knows if this will be a one trip deal or the start of a new relationship . . . . . we need to go with an open mind and heart and be content with however it plays out. Praying that God will go before the situation and will lead all the way. Will update more later on Friday ….

Love,
Jenny

More thoughts tonight ....

Two posts in one day .... that might be a new one!

Things to pray for between now and Friday morning:

- Travel safety (to central IL and to Chicago Friday am)
- The Chicago will be able to understand my medical case quickly, offer insight and a possible solution to the current problem.
- If he (dr.) thinks that I need to see a neuro guy, perhaps he will offer to get me into see someone in Chicago sooner.
- Pray that is an orthopedic issue and not a neurological problem.
- Pray for a specific suggestion on how to improve things – general stuff is not real useful.
- Expectations; that we’ll be happy and thankful for whatever happens.

- Agreement; perhaps he will agree w/the TX dr. on the next step.
- If it involves something surgical, that we’ll be able to make a decision and move forward …. the pain issue continues

10:30am appt. – Friday, March 6th – w/Dr. K at Northwestern
Orthopedic Institute

It is a HUGE blessing that I was able to get in to see this physician yet this week …. We just called on this on Monday afternoon. God is good! This Chicago dr. has a very impressive bio on the Internet & it said that people come from all over the world to see him. I am still checking w/TX to see if they feel the gait analysis test needs to be done again – not totally sure yet, so that has not been scheduled.

My dad’s brother is going to go w/me to Chicago and will be my driver on Friday. It is not wise for me to drive in downtown Chicago with my left foot as the driving foot, much less have to figure out parking when we arrive.

My physical therapist & I feel strongly that if I do 2 orthopedic opinions and 2 neuro opinions between this week & next that this is probably enough. When you get too many opinions, everything gets complicated and messy.

I am hanging in there and am doing okay. We are just taking it day-by-day and will get through this one way or another. We haven’t come this far to have it all fall apart now. The past 2 ½ months were nearly perfect, so we can’t be that far off …. I don’t regret any decisions that we’ve made for treatment thus far. There is a reason that all of this is happening now, although we may never understand it. Keep believing that it will work out!

I did not have students today & won’t tomorrow, so that has been a nice break and I’ve been able to get a lot accomplished at my desk. I will drive to central IL on Thursday night and will stay at the Eickhorst farm …. We’ll leave bright and early on Friday morning. I will take the laptop on Friday, but am not sure about updating; really depends if I can find a place w/free wifi.

Thanks for hanging with the situation and for praying …. it means more than you will ever know & it is what is keeping us going.

No pedicure needed this week …. the one from the last Chicago trip is still good!

Love & hugs,
je

Neurologist Appt. update .....

Update from neurologist appointment this morning ….. nothing substantial really happened. He basically didn’t know what it was and had not seen anything like it before. He agreed that it does seem to be a problem with the tendon remaining in a contacted state. He referred me to another neurologist that takes 4-6 mo. to schedule with (even if I go through him). He did say that there were no further tests to do and it is not the “typical” neurological problem. His thoughts were that it could be a “learned behavior” pattern (hasn’t happened) or possibly would fall into a category called dystonia, but two other doctors have previously said that it is not that condition. Dystonia is a fancy medical name for a muscle spasm. There is no cure or medication that is used for dystonia and it is kinda a “catch all” for a lot of unexplainable neuro contraction issues. The bottom line was that he couldn’t explain why it is happening or what is causing it or how to fix it. We spent a lot of time talking about the Botox issue again – however, it is only a temporary fix. He wasn’t familiar with any of the foot surgeries that I had …… I knew WAY more than he did in the orthopedic department! He did say that all the neurologists that I’ve seen in the past are good doctors and that we have made good decisions in whom I have consulted with.

I am going to go to see the foot/ankle surgeon in downtown Chicago on Friday. He has been doing foot surgery for 30 years, so presumably he has seen a lot of tough cases. He is also the team physician for the Chicago bears, so he has some strong medical experience.

All this to say it was another opinion, but we’re no further ahead ….. trying to keep things in perspective for Friday and not get my hopes too high. Thanks for praying this morning!

je

Appointment Progress Today .....

Today was the day that some progress happened regarding appointments ....
I heard back from a neurologist's office at Barnes downtown and they had a cancellation appt. for tomorrow (Tues.) at 10:30am, so I am going to that appointment. I was in the middle of making slime with kids at Monsanto, when my cell phone rang .... I had this wet, green goo junk all over my hands, but I managed to take the phone call! Pray that this appointment goes well and that we learn somthing. I will be happy if he can tell me if it IS or IS NOT a neurological problem.

My contact in Chicago also e-mailed back with two physician names - one neurologist and one is the chief orthopedic foot guy at Northwestern Univeristy in downtown Chicago.

I managed to get an appt. for this Friday (3/6) with the Chicago orthopedic surgeon for 10am. It is hard to know whether or not I should go or not ..... you can always learn something, but it is a hard call. I tentatively scheduled the appointment and will decide after the appt. w/the neuro guy tomorrow morning, whether or not it looks like it would be worthwhile. The referral for the Chicago neurologist is 2-3 months, so I would need help in getting an appt. sooner (which may still be possible).

If I'd see 2 neurologists and 2 ortho guys between this week and next, you'd hope that would be enough. You can also end up w/too many appointments and then everything gets confusing, so I don't want that to occur. Hopefully I'll have a better sense after tomorrow morning as to how to proceed ....

This is what I have scheduled so far:

Tuesday, March 3 - neurologist - Dr. C - St. Louis - Barnes downtown
Friday, March 6 - foot orthopedic surgeon - Dr. K - downtown Chicago
Tuedsay, March 10 - neurologist - Dr. L - St. Louis - off Olive
Wed., March 11 - foot orthopedic surgeon - Dr. C - Dallas, TX (previous dr.)

Pray for neurologist wisdom at 10:30am tomorrow & that hopefully we've already done the right tests and that we won't need to do more! I am trying to keep an open mind and am hoping that this experience w/Wash U is different. I was in a lot of pain at work today and was limping around most of the day. Will update the blog tomorrow evening with the latest .... keep praying - the prayers are working!

Love,
Jenny